# Thyroid storm.



## Sadface

My thyroid has been hurting and ballooning the past month. I also became sick and very tired. Felt like the flu. I did an US last week. I called my PCP several times asking to be seen because I felt so sick and the thyroid hurt so much and got bigger. When I saw him last I just had a little nodule, hence the reason for the US.
My doctor kept on putting me off saying I need to wait for US results. I felt scared and several times this long memorial day weekend I thought of going to the ER.
Tuesday I called my PCP again, complaining but he still didn't want to see me and told me to contact the ENT he had previously referred me to.
I did get an appointment with him to get the US results that same day but when I came they told me the ENT doc couldn't see me as he was rushed to the hospital.
Then I decided I should go to the urgent care since my pulse was beating so hard and fast, my head was shaking and hurting really bad, I was sweating bullets and felt like I was dying.

The urgent care took my pulse, it was 120 and wanted to get me an ambulance to go to the ER. I refused, drove myself and got admitted very fast.
After about an hour we got the blood test results and they told me I was in a thyroid storm! Whaaat?

They wanted to keep me but I was later able to go home after they gave me iv beta blockers and also oral. I got a beta blocker prescription and this morning I'm going back to the hospital to do a radioactive iodine (?) scan. They think I might have Graves or toxic nodules. My US showed nodules or possible the whole left lobe is replaced by a nodule, and also lymph nodes. Doc didn't think it was cancer though.

So I'm kind of taken by this. My pulse is ok on the meds, around 80. But I'm still sweating like mad, I can't sleep and if I do I wake up every hour drenched in sweat, it's gross. So gross. I feel I need to buy a new matrass after this is over.

I'm so tired, so weak, it's hard to even walk, I'm puffing like a 80 year old. 
But I'm really upset with my PCP that he completely ignored me for a whole week when I called and said I was so sick. They told me at the ER that thyroid storm is life threatening and needs to be treated stat. 
I feel like my PCP didn't believe me when I said my thyroid had gotten so big and painful. I feel like getting a new PCP.

Yesterday I met with my endo doc for the first time, at least she seems very nice. But how can I let my PCP know that he did me wrong? Do they get report from the ER? 
In hindsight I'm so happy I did drag myself to the ER last Tuesday or things could have gotten ugly.


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## Andros

The most important thing right now is to take care of yourself. You can address other issues later. Humble opinion.

Since you start a new thread every time, I cannot recall your history.

I may have suggested that your were hyper and I may not have. I am sorry this happened to you. You are lucky you did not go into vascular collapse.


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## Sadface

My newbie intro is; http://thyroidboards.com/forums/topic/10581-im-also-a-noob/
Sorry for starting new threads, my brain left for vaca and I'm not sure if it's ever returning, lol. I'll be minding the threads from now on! 

Yes, I feel pretty lucky. I'm doing pretty well with the beta blockers. But I can't sleep for the life of me so I'm sitting on the couch with racing thoughts. I'm not really gonna address the PCP issue but I will most likely get a new one as soon as things settle down. I just need one I can count on and trust. Luckily I know there are million good ones out there.


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## jenny v

First things first, thank God you listened to your body and got to the ER! Second, take care of yourself right now, stay away from stress and try to relax. Third, when you're feeling better and things are under control, ditch that awful PCP. He obviously didn't listen to you and that could have been life threatening in this case. There are far better PCPs out there and this one is a serious dud.


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## webster2

Hang in there, it will get better. Just rest for now as much as you can.


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## Sadface

Jenny V and Webster! Thank you both for your support. I'm taking it really easy, just sitting on the couch. And at least I got Ambien today from my PCP, he called in a script. So I sooo hope I'll be sleeping better and longer tonight. But not so good that I'll be missing my second scan at the hospital tomorrow am, lol. I hope I can get some answers tomorrow, the scan tech told me the doctors will read it tomorrow. I hope the nodules are hot and not cold, I really would not like putting needles in my lump right now, I think I would faint, haha. Aw well, time will tell.


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## jenny v

Keep us updated!


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## Sadface

Jenny V, thank you and yes, I will! Can't wait to the day I'm back to normal and I can shout it out to everyone.


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## Sadface

Just compared my labs from May 5th and now May 24;

5/5
TSH: 0.12 (0.40 - 4.00)
FT3: 4.6 (2.3 - 5.0)
FT4: 1.2 (0.80 - 1.76)

24/5 at the ER
TSH: 0.02 (no range) L
FT3: 8.57 (no range) H
FT4: 3.12 (no range) H

So this is what happened in 20 days! I've never even considered thyroid storm, I thought that only happened Graves patients after a long time untreated. 
My neck is still hurting a lot the real fear is that heard beating so hard,


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## jenny v

You're still taking the beta blockers, right? How much are you taking? You might need a dose increase there--when I'm hypo (or hyper), my heart pounds super hard and sometimes races and the beta blockers help.


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## Sadface

Yes, I'm on 50 mg daily. This morning I had to take it 3 hours early due to the pounding. 
The ER doc said I could take 2 a day if 1 wasn't enough, but when I asked the Endo she didn't think that was a good idea? So I'm not sure.
My fever is getting higher, woke up at 12.30 am burning up.had 100.4 F orally even though I took Advil at 9 pm. Well, if my pulse get over 100 I'm going back in. My thyroid keeps on hurting too, now it's mainly the right side, making me think it's really subacute thyroiditis.


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## webster2

Are you on any anti-thyroid medication? It does sound like the beta blockers need to be increased. I took it 3 times a day and found it helped. Good luck, rest, and get yourself in to the ER I it gets worse. You may want to let your family, or folks that are around you know what the symptoms of thyroid storm are.


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## Andros

God bless you! I am so glad you are here w/us and that you are getting the medical intervention you need and deserve.

Sending hugs!


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## Sadface

Thank you Webster2 and Andros for replies and hugs 

I think I will call my endo tomorrow, I did ended up having to take another 50 mg Atenolol at 9 pm tonight because it felt like my heart was coming out of my chest. It doesn't beat faster than 85 bpm, but it's so damn hard, its so uncomfortable. Since my ER doc said I could take 2 a day, I just decided to take that one extra even if my endo said I shouldn't. 
I just don't know what to do with myself, I'm just laying on the couch moving, trying to get into that "perfect position". And sweating even though I have cranked up the AC. 
I hope the endo will say it's ok to take 2 or even 3 50 mg of beta blockers a day.


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## Andros

For the time being, you should also be on an antigoitrogen such as Tapazole to slow down the metabolism. Are you?

Let us know how you are doing.


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## Sadface

Andros, no, I'm not on any other meds, the only ones I've got so far is the beta blockers and Ambien. I have no clue what this is so far, all I know is my high labs and this big clump growing in my neck. It's 7.30 am here right now, I'm calling my endo at 8 am.

My sister, who was just recently diagnosed with Graves a few months back, got those Tapazole. It turned out those had no effects on her at all, her thyroid levels kept on going up. So they put her on a new med now. Since I seem to follow in her footsteps I've already sort of lost faith in those, lol...
Do the levels really have to go way down before they can do surgery? Even if it's hot nodules and not Graves?

I just read up on another "sure" Graves symptoms, and that is having smooth elbows. Great, I felt my elbows and they're smooth as a baby's behind! Like silk! I remembered them being much more rough in texture, even though I never really paid that much attention to them.

I hope I can get the results of the uptake scan today. But I'm betting my right arm they'll insist on a biopsy. Ok...only 10 more minutes!


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## jenny v

It sounds like you need to be on Tapazole or some kind of anti-thyroid med (I was on PTU a few years back when I was hyper) or the beta blockers won't be much help. I would follow the ER doc's advice on them, I have taken up to 150mg of mine before when I was hyper and my heart just wouldn't slow down, but you'll need to watch that your blood pressure doesn't dip too low.


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## Sadface

Jenny v, yes, ER doc told me to chug water because of the low BP thing. It's now almost 11 am, I called at 8 am to leave message for the MA. I wonder when it's ok to call in this "second opinion" thingy, lol, I feel I need another "lifeline" by now. 
I'm gonna drag myself into the shower, I haven't washed my hair since Saturday and I look like, well, um...really bad. Just in case I'm heading out. Don't want to cause any zombie scares.


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## Octavia

Sadface, I have to echo what others have said here about getting on some anti-thyroid meds. I'm a bit surprised the ER doc didn't mention this at the very least, with instructions to follow up ASAP with your primary care physician. The beta blockers will only block the symptom...the anti-thyroid meds will begin to solve the issue at its source...at least for now.


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## Sadface

I'm surprised too, nobody has contacted me, no info, nothing. Even though I'm pleading. 
Anyways, I got the brilliant idea to call the hospital to ask if my scan was ready and read by a physhician. They said yes, and that I could pick it up if I showed I.d.

This is it, please help me interpret: The study demonstrate visualization only of the left gland. This measures 4.5 cm in length. Therebis a generalized I'll-defined heterogenous uptake with NO dominant hot or cold nodule (so, at least NO cancer, right?)

Recorded at 1.5% at 6 hours and 2.3% at 24 hours.

Impression: Abnormal thyroid uptake with respect to both the imaging (only left gland visualized) suggesting suppression of the right gland. HYPOthyroid level uptake with respect to the 6 and 24 hour uptake values.

So, ill-defined heterogenous spells cancer to me, but, NO nodules says no cancer.

How can I be hypo but be in a thyroid storm? Could this be Hashimotos? And Hashimotos thyroiditis, spilling my last thyroid hormones out in the system? I'm even more confused now, perhaps I shouldn't have gone and picked it up and just waited for my endo to call me back...?

If it is thyroiditis, will thyroid suppression meds help? Since obviously my thyroid is hypo, gaaaahhhh, if I thought I've already lost my mind, I just lost it again....


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## Andros

Low RAIU uptake and cancer
http://journals.lww.com/nuclearmed/Abstract/1987/05000/Thyrotoxicosis_Caused_by_Functioning_Metastatic.1.aspx
(Copy and paste into your browser)

If the uptake was low; that could suggest cancer.

info provided! Geez!

What course of treatment did your sis have? Do either of you see a reason why you both have this issue?

Sending huge hugs,


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## Sadface

Andros, thank you for the hugs! 

I have no idea, my sister (9 years younger than me) lives in Europe, were far apart, I haven't been home in over 2 years for a visit. My whole family lives over there. The only connection I can see is the Tjernobyl catastrophe in 1986, (I was 16) I remember we had high radioactivity in my country then (not Russia) We couldn't eat the wild berries or deer meat for years. Maybe I ate some anyways, that would be so me back then...lol. My sister was only 7 years old then. But it is in the family since my grand mom (died when I was 11) had toxic "struma" that affected her heart. And my mom had a benign thing growing on her thyroid, but symptoms went away by themselves.

So help!!! Could this be metastatic cancer, say from the breast??? I did discover a lump in my nipple almost 2 years ago but I refused to have it looked at. I had just been through an ovarian cancer scare where they scared my half to death and chopped me up and removed my uterus and ovary, for nothing. Just benign cyst/mass. So I just refused to go through the same thing again, having them cut off my breasts. For nothing, or so I thought. Until now.
But, the breast lump is on the right breast, right under the nipple. And I -don't- think it has grown during this time. I do have 2 aunts with BC though...

I just don't dare to call the endo again. It's a little past 3 pm, hopefully at least the MA calls back before 5 pm.


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## Sadface

PS; my sister caught her Graves by chance. She went to her PCP (in europe) to ask for antidepressants because she had felt so anxious and nervous for quite some time. The doc gave her some but said, let's just check your thyroid while your here. And it came back with very low TSH and FT3 and FT4 within the ranges. Just like my first test the 5th of May!!!

So, they did an radioactive test on her too, but she got a shot in her arm and was read within the hour. And the doctor said it was a clear case of Graves. They put her on this antithyroid med, said they needed to lower her levels before surgery. She also got Ambien and Valium and another calming drug, "Atarax"? And beta blockers, the same I have now. And she kept on eating the Zoloft.

The she started to get debilitating diarreah, every time she ate it went right through, so she's now on sick leave. (I'm severly constipated, 2+ years now) She quit the Zoloft, it turned out the antithyroid meds didn't do a thing since her levels just went up. So now she's getting another one. She's getting better in her stomach but is very, very tired. Luckily for her in my home country, you can have a very long sick leave (years and years) without risk losing your job and you still get like 80% or so of your salary. 
So she's taking all of this in stride, is doing pretty good. Her anxiety levels have gone down a lot. And she's looking forward to her surgery, just want to have it over and done with. Oh, and her TRAK or TRAB (English) was slightly elevated, so her diagnosis is definitely Graves.

I told her when I first started to get pain in my thyroid that "look sis, I think I have gotten sympathy-Graves with you", like haha, a joke. I really thought in the beginning that I just slept wrong with my head, like rotated it 360 degrees while sleeping. Never, ever in our life's did we think I would get something with my thyroid now too, just when she got diagnosed..it's justcrasy!

Oh, btw, my little sister is my best friend and it's really hard to live so far apart. I'm really homesick, have been homesick for over ten years, but can't go back for a long time (kids)


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## authorsue

I know this disease is terrible, but stress only makes it worse. You need to try to calm down and relax. Stop counting your numbers, and be thankful you can take beta blockers. I couldn't. Write down the things you're experiencing and take the list with you to the endo. List questions you want to ask. Listen when she talks. Take notes. This isn't something that's going to disappear over night. You're going to have to stop worrying so much and follow the doc's directions. She can understand all those numbers a lot better than us. When she feels it's time for treatment, I'm sure she'll discuss it with you.

If she says RAI, that's just radio active iodine pills (2 generally), and as far as I know you only have to take them once. My endo said this is the best and safest treatment and they (the medical community) have been using it for about 60-70 years now. If she mentions surgery, talk to her about the risks. But before any treatment, ask for a CT scan. It's painless, quick, and it may tell her a lot. Most of the people I've talked to who have Graves Disease have a tumor (benign) on or near the pituitary gland. The ones who had it removed before treatment, returned to normal. They didn't find mine until after I'd been treated, and it was in a place to dangerous to operate, anyway.

I hope only the best for you. Keep us updated.

Sue


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## Andros

The best thing to do is to take it one step at a time w/this and we will walk that road with you. And wow! It could be from that radiation exposure. Did you all have to take the iodine as a preventive?

Hugs,


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## Sadface

Hi and thank you for writing!

I've been to the endo today. She sent me to the hospital radiology because she wanted to rule out bacterial thyroiditis. She said the thyroid uptake scan showed thyroiditis, no Graves.
I also went to the lab for more bloodtesting. The radiologist said there were no abcesses so I don't need a biopsy but he said this is most likely autoimmune, like Hashimotos. And that would make a lot of sense, all of my hypo symptoms for 2 years now (but got real bad last year, June) 
So, I'm kind of taken back. I'm still on 50 mg x 2 of beta blockers a day since my heart still beats like a sledgehammer. But I hope I'm running low on the excess thyroid hormones very soon. And I hope the thyroid stops hurting. The endo said she would call in a stronger ibuprophen to my pharmacy. 
Right now I'm just so tired and weak. I'm going to take a nap right now. But I'll keep you updated, this site is great, I'm very glad I've found you.


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## Sadface

One question, can they surgically remove my thyroid if it's Hashimotos? Will that be the "quickest fix" to get to feel better? And, if the thyroid is gone, can those antibodies start to attack something else since they can't bully the thyroid anymore?

If not, how long can this go on, the pain, fever and horrible flu feeling? 
And how long can it take for the hyper symptoms to go away? And if the thyroid stays, will it shrink up to nothing with time? (I look weird on my neck and I really don't want to have this clump for ever or I will have to wear a scarf, yikes)

On a positive note I'm kind of happy about that my thyroid swelled up and forced me to seek care. Now I can get help and I even have a very nice and caring endo doctor. I mean, now it can only get better. I haven't lived for so long now, I miss my old self and my life. Not to mention I want and need to start working to be able to pay the bills.

Have a great night everyone!


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## jenny v

They can remove a thyroid if you have Hashi's, but they typically don't. I had Hashi's for over 10 years and fought through hyper/hypo cycles for a good number of those but mine was only removed because it had started growing backwards into my throat and was displacing my esophagus (causing swallowing and breathing issues).

Unfortunately, I don't really know if there's a quick fix for thyroid issues. It can take months for some people to find the right dose of meds and stabilize, but some people feel better much sooner than that. I think the most important part in the beginning is to find a good doctor (one who tests Frees) and make sure they listen to your body and your symptoms. My biggest problem for the first few years was not being educated on my disease and trusting the wrong doctors (who only believed in Synthroid and TSH).


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## Sadface

Oh, I would like to remove this thyroid yesterday! I really don't know what to do. I don't have another scheduled appointment with my endo doc until June 18. I'm just getting worse and worse, I can't even tilt my head a little bit back anymore due to pain. The right side is now bigger than the left and hurts the most. I ran out of Ibuprophen because I just didn't feel like going shopping. Yesterday I found a bottle of Dayquil that I've been chugging out of, but it's gone too now. I'm almost thinking about going over to a neighbor to ask if I could borrow some Advil. But that means I need to shower...another impossible task. 
I don't want to call in favors from old friends, I haven't spoken or met any of them for 12 months now. They most likely think I'm a flake. 
The fever was 101.1 F this morning, but it's kind of nice having it. I'm freezing instead of sweating. But the neck pain and headache is nasty. 
Sorry for the woes but this sucks!


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## jenny v

Does your endo have a cancellation list you could get on? I would call the office, explain what's going on and ask to put be on the cancellation list.


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## Sadface

jenny v said:


> Does your endo have a cancellation list you could get on? I would call the office, explain what's going on and ask to put be on the cancellation list.


Yes, I might just give them a call. But I'll have to be lucky, they're super busy. The only reason I got in so fast was thanks to the ER doctor. Well, she told me she was going to call in a strong ibuprophen prescription for me, I think I need it. But I still haven't heard anything about it.


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## Sadface

I was called up by my endo herself Friday after hours. She said it's an inflammation, possible autoimmune and that she will call in Prednisone at my pharmacy. I said I really don't want to take it due to all the nasty side effects, like choosing between the pest and the cholera (and I already "have" the pest) But it's there just in case I change my mind. She told me though it's ok for me to use 800 mgs of ibuprophen a day. I started that but it left me with hours of pain and fever in between waiting for my new dose. So now I take 600 mgs every six hours instead. 
Well at least I'm under the radar and will get help when I go hypo after this. I just hope it doesn't take too long. I have no idea what this means for my future health but I will give my best shot in healing my immune system naturally. I just watched a Netflix documentary "Fat, sick and dying" about a man that had an autoimmune skin disease. He was also overweight, had brain fog and just didn't feel well. His transformation was unbelievable, he looked like a whole different man after. And he felt so good and had clear thinking. 
He also continued to eat healthy after his fasting, cut out the fast foods and processed foods and loaded up on veggies and fruits. I got so inspired. He could also quit his Prednisone medication since the skin disease was in remission.


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## Andros

Personally, I am not entirely confident about your diagnosis and treatment regimen. Would it be possible for you to see an ENT for a second opinion?

Sending hugs,


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## Sadface

I did see an ENT in the beginning of this, when it all started with a lump on my left lobe. He was going to see me on the day I went into a thyroid storm, but when I came in for my appointment he got called away for an emergency at the hospital. He was going to let me know my first ultrasound results. I never heard from him again.
But the ER doc told me I'm not going to see him anymore, only the endo doc that was the same as my physician was going to refere me to. 
I've been thinking of second opinions but I just got on Medicaid, I'm unfamiliar with how that works and I don't think I have energy to look for another specialist anyways. That means I need to find a new PCP first as well, which I will, as soon as this settles down.

When the endo called me last Friday I asked and she said no, it's definitely not cancer. I think I'm just really unlucky in how strong symptoms I've got, the pain, fever and the weakness, the pain being the worst. The ibuprophen doesn't hold the pain, so I'm going to go out today and buy some Tylenol to eat in between doses. It's hard to drink even water and I can't bend my head backwards anymore, I have to keep my head low. 
And the night sweats are horrible still, I wake up three times at night as if I took a shower. I have no words for it how gross that is.

So what other things can this be do you think? The endo told me that sometimes (very seldom) they find lymphoma hiding in this (my neck lymphnodes are enlarged) but my latest CBC looked normal. And my sed rate showed inflammation.

I'm sure they'll do another ultrasound on my thyroid when it's back to normal. The very first one showed nodules, also on the right one before it was affected. I had a lot of tiny ones, six to eight mm big and according to report most likely insignificant. 
Right now my thyroid looks like a large dog bone, that's what they said at my last US. And I guess it's too "mushy" to really see anything else standing out.

I just hope this will be over soon.


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## jenny v

I hate to ask (because I know the side effects can be icky), but maybe the prednisone should be back on the table? The steriods might help a lot to reduce the inflammation and the size, which could greatly help with the pain.


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## joplin1975

Honestly, my knee jerk reaction is that if you have had one storm, there's no guarantee you won't have another. They are life threatening and it is...hard for me to understand why they wouldn't be putting you on anti-thyroid meds immediately and moving you as quickly as possible to surgery. I'm all for supportive measures that can alleviate or help with medical conditions, but this is really, really serious and, I think, demands immediate and serious action.

I'm sorry you feel so poorly still.


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## Sadface

Yes, trust me, it's tempting when the pain is unbearable, lol. But I'm just too afraid of it. I'm scared I will start to feel worse even though the pain might go away. I've heard it also raises the BP and the pulse and I just can't take that. 
It really can't be much longer like this anyways, can it? My understanding is max 3 months of acute inflammation, then it burns out. I hope it's getting better in about a week from now. And it seems the Prednisone is for quite some time, starting with 50 mg/day and slowly weaning down. 
I've never used steroids, never had to. I've only heard really bad, bad things about it. And people who got their health ruined thanks to them. I think the Tylenol I'm getting today will help a lot with the breakthrough pain. You can use 4000 mg/day which will be very helpful.


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## joplin1975

Well, I can't speak for anything related to thyroid, but I have horrible allergies and Predisone was a life saver during a severe allergic reaction to a yellow jacket sting. To tell you the truth, I felt like a million bucks on it.

My mother in law takes it daily for a rare and sever autoimmune reaction and her life is infinitely better, thanks to the medication,

Much like thyroid meds, some have crappy reactions, but that doesn't mean it's a bad drug.


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## Sadface

Joplin1975, the antithyroid meds doesn't help since my thyroid isn't making any new hormones right now, just dumping out what was stored, causing an overload. The inflammation causing the colloid cells to burst. And it will take months, if ever, for them to repair themselves and start to work properly again. If it's autoimmune this most likely will return over and over again, in which I will beg for thyroidectomy. And sometimes the inflammation is so brutal that the cells never repair themselves again, leaving one permanently hypo. 
I think this might be Hashimotos and that it's been going on for a long time. My life pretty much stopped in its track exactly one year ago, even though I felt sick for two years now. Beginning after my hysterectomy. In a way it's a blessing because now I can get help.


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## creepingdeath

I do not know what State you are in but I am also on Medicaid in Pennsylvania and you just can't ask for an operation here.

I was told by My Endo that they will not approve the removal unless for two reasons .

One - Cancer and Two goiter causing you breathing and swallowing issues that have to be proven beyond a shadow of a doubt life threatening .

Although I have never gone hyper with Hashi's yet my goiter is very large and inflamed like yours and has been that way for more than two years.

If I am ever offered Predisone I'd take it in a heart beat. Or at least give it a try.

I take prescription ibuprophen also which does nothing much for pain or other symptoms all that much.

When living this way for so long you will try anything to feel well even for just a moment................


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## Sadface

Creeping death, that doesn't sound very promising. I'm so new to the Medicaid, but I believe you.

Do you also have pain in your swollen thyroid? And you had it for two years? That's just outrageous they let you live like that. Why haven't you been offered Prednisone yet? Here they seem really happy dishing it out.

What I'm afraid of is that the Prednisone will make me feel even worse. It might reduce the pain but make my heart beat harder, which I'm already getting meds for. And that it will make me really depressed and give me insomnian(more insomnia, that is) 
So when weighing the options it's pretty easy making the choice. But if this just never stops I don't know what to do. I might apply for this states indigent program, I'm pretty sure they'll approve a thyroidectomy so I can get well enough to work and buy my own private health insurance. That seems like it will save everyone the most money anyways, but I know stuff like this doesn't always follow logic.


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## creepingdeath

I have pain everywhere. From headaches to foot pain.

My symptoms are very severe and very debilitating.

I am sure they haven't offered steroids yet because I don't think they are too sure what all is really wrong with me yet.

I have been going to a low cost clinic because I am unable to work myself for the last couple of years.

I have been going for maybe a year and a half.

Because I am a man 52 years old never married or had any children I had a really hard time getting on Medicaid.

I just got on it last January with help from the clinic.

They are just starting to get the ball rolling with all kinds of tests.

I was just diagnosed with Hashi's a few weeks ago but was sure I had it because I have vitiligo on my skin I have had almost all my life which is also an auto immune disease.

I just had more blood work today.

Being tested for Lupus.

The Doctors think I have multiple immune problems going on because of the strange and debilitating symptoms..

So I am still in the process of being diagnosed.

I did take synthetic thyroid medication for at least a year but never really felt any better on it even though my lab levels were perfect on the replacement.

My symptoms may have nothing to do with my thyroid and could be because of something else.

Being diagnosed and treated takes so long.

It just gets so frustrating at times because you just want to get better and get on with your life.

I am not saying Medicaid will not pay for you to have your Thyroid removed but it will probably be the last resort.

They will most likely try medication first.

If you keep going hyper and it is uncontrollable "life threatening" I am sure they will have to either zap your thyroid with radiation to kill it or have it removed.

I do know it is not that easy to find Doctors who take Medicaid either .

The Clinic I go to is in a Catholic Hospital and the whole compound takes Medicaid so I do not have to look far for all the specialists I need.

I sure hope you feel better soon but just want to warn you it may be a long and rocky road also.


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## webster2

Sadface,

I was looking though old medical records after my last thyroid surgery. I found that 2 years before the thyroid storm and Graves diagnosis, thyroiditis was marked in my record. I had been really sick in those 2 years with weird things. I know they never mentioned thyroiditis to me because I would have jumped right on it, having had issues years before. I am not saying our cases are the same, but are you able to go to an ENT for a second opinion? If you have had a thyroid storm already, you sure don't want another. I seriously thought I was going to die when I had one. I had never felt so awful in my life. I am sorry you feel terrible and hope someone will help you soon.


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## Sadface

Creepingdeath, my goodness, that sounds just aweful. You must really have had it by now! Your Medicaid situation sounds so weird. I got approved in just a few days. All I had to do was to answer some questions online and submit. Then I got approval and my Medicaide number very quick. They even pay retroactive 90 days back, even though I'm not gonna bother. I thought this new Obamacare made it illegal to not get proper medical care. 
All my doctors I've been to accept it. Maybe it's different from state to state. But I know it's income based and my income changed, big time. I just want to get healthy so I can work and use my education that I paid big money for. I'm sure you want too. Can you apply for disability? So you at least can eat and pay your bills meanwhile your sick? I'm so sorry and I hope your situation change fast for you.

Webster2, thank you for your support. I'm not sure I can go back to the ENT I first saw. He was the one who said he thought I had a hot nodule and told my PCP to refere me to an endo. But then the situation changed pretty quickly and my "1 cm lump" turned into a balloon, spreading out on the whole thyroid. 
I'm seeing my endo again June 18 and I will ask for antibody tests (my TPO was 10 (0-34) on may 5th and is considered negative. But I haven't tested for other ones yet.

Last year I started to feel terrible, I couldn't do anything except lay in bed or on the couch. I had severe insomnia and when I finally slept I always woke up in like a panic attack, heart racing and I was shaking. I also had terrible hot flashes that came several times an hour, I could feel them coming as a very weird and aweful feeling, they left me drenched and exhausted. They started in June and just suddenly disappeared in December, completely. I also had night sweats but not as intense as now. 
Everything was a chore, even to shower was a chore. My skin became very dry and strange and I couldn't run anymore, and I used to run five, six days a week for more than a decade. I never went to a doctor because I didn't have insurance and I was hoping this would go away. That it's maybe just a severe case of menopause or something. I have tons of more symptoms, if I go through a thyroid check list I have almost each and everyone.

I think it's related to my thyroid now swelling up. But only time will tell. And if I get any thyroid storm symptoms I'm going straight to the ER, I now know how it feels. My pulse is pretty good now on the beta blockers, between 80-85 resting. It still does some weird summersaults inside my chest throughout the day but nothing that worries me. When I went to the ER my pulse was racing, I had a terrible headache and my head was shaking, I couldn't keep it still. My knees felt weak and I felt like I was gonna fall over walking down stairs. My eyes were red and I just knew this isn't good. It was the most terrible feeling ever.


----------



## creepingdeath

Sadface said:


> Creepingdeath, my goodness, that sounds just awful. You must really have had it by now! Your Medicaid situation sounds so weird. I got approved in just a few days. All I had to do was to answer some questions online and submit. Then I got approval and my Medicaid number very quick. They even pay retroactive 90 days back, even though I'm not gonna bother. I thought this new Obama care made it illegal to not get proper medical care.
> All my doctors I've been to accept it. Maybe it's different from state to state. But I know it's income based and my income changed, big time. I just want to get healthy so I can work and use my education that I paid big money for. I'm sure you want too. Can you apply for disability? So you at least can eat and pay your bills meanwhile your sick? I'm so sorry and I hope your situation change fast for you.
> ______________________________________________________________________________________________________________________________
> Applying for Disability might just be what I may have to do but I need to find out everything that is wrong with me first.
> 
> It is not that easy to get on it either. I will have to get a lawyer and it could take a couple of years.
> 
> If you have children under the age of 18 you get on Medicaid almost automatically.
> 
> If you are a Man in my age range with no children you need to be disabled to get on Medicaid.
> 
> I was given a form from the clinic I go to that states I am temporarily unable to work which puts me into the disabled category.
> 
> Obama care??????? Ha!!!! just another way for the government to make money. Do not believe everything you read.
> 
> I also applied for Medicaid online but it took a couple of months to get approved , sign up for coverage with a Medicaid insurance company and for the insurance to go into effect.
> 
> I am sure it differs also from state to state.
> 
> Also unfortunately Pennsylvania is one of the States that did not expand Medicaid which makes it harder to get on it.
> 
> There should be universal health care in the U.S.A.
> 
> I am sure there are people out there suffering and can not get any help.
> 
> Thank God for my Family, especially my Dad.
> 
> If it were not for him I would be living on the Streets.


----------



## Octavia

The few times I've been on Prednisone, I loved every minute of it...honest! It's like a 1 to 2 week burst of energy for me.


----------



## Sadface

Creepingdeath: I hope you'll get approved for disability. And fast. And yes, I think the whole Obamacare concept is almost criminal and tyranny, but it does work in the opposite way too if you can't afford it. They -must- help you. 
I always used to have great health insurance until my divorce. I never worried. Now it's kind of scary, I didn't even know how Medicaid worked until someone told me to apply. I'm glad I did, there's just no way I could have afford all these ultrasounds, uptake scans and blood tests without it. I'm glad you have your dad! If things go really south here for me my mom says I can move home to live with her in Europe. But it would be very hard to separate from my kids. I do want to live and work here, I've made a life here since 16 years back. But mom is always better than ending up under a bridge here. I'm no use like that anyways.

Octavia, yes I've heard it's like a kick. But I'm wired as is, lol, I probably start crawling on the walls.


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## Sadface

A little update: I think the pain is going away some! Last night I only woke up drenched in sweat once! And my ibuprophen dose were supposed to be taken at 3 am but I slept in until 5 am! And the thyroid didn't even hurt that much. I still took 600 mgs of ibuprophen because I had a headache and I felt slightly feverish even though I'm not sure I acctually had a fever. 
So I'm sooo hoping that this inflammation is going away now! The thyroid is still large and hard as bone but it feels as the lymphnodes are going away. 
And I didn't even use Prednisone, ha! 
So, I guess I'll be hyper for at least six more weeks, then euthyroid for one or two weeks, then drop to severe hypo and I'll get help from meds. 
I'm going to the supermarket today to buy tons of fruits and veggies and organic chicken. I'm starting my detox right now, I'm so fed up of being sick. It's time to take charge of my own health. Today. 
I believe the real medicine is in our diet, what we put in our bodies. No more sugar, flour, gluten or processed foods for me.


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## creepingdeath

Sadface said:


> A little update: I think the pain is going away some! Last night I only woke up drenched in sweat once! And my ibuprophen dose were supposed to be taken at 3 am but I slept in until 5 am! And the thyroid didn't even hurt that much. I still took 600 mgs of ibuprophen because I had a headache and I felt slightly feverish even though I'm not sure I acctually had a fever.
> So I'm sooo hoping that this inflammation is going away now! The thyroid is still large and hard as bone but it feels as the lymphnodes are going away.
> And I didn't even use Prednisone, ha!
> So, I guess I'll be hyper for at least six more weeks, then euthyroid for one or two weeks, then drop to severe hypo and I'll get help from meds.
> I'm going to the supermarket today to buy tons of fruits and veggies and organic chicken. I'm starting my detox right now, I'm so fed up of being sick. It's time to take charge of my own health. Today.
> I believe the real medicine is in our diet, what we put in our bodies. No more sugar, flour, gluten or processed foods for me.


Glad to hear you are feeling somewhat better.

I sure hope everything goes the way you want it to.

I have never been hyper as far as I know but I can tell you going hypo is no picnic either.

I have been extremely hypo for a long time and took med's till my lab numbers were in range and I still did not feel well.

Getting back to the way you used to be may take longer than you think.


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## Sadface

Creepingdeath; yes, I think I've been hypo the last 2 years already. It all started after my hysterectomy, life just went downhill. I've had pretty much all symptoms of hypo, so I know how crippling it is. But at least now when I will become hypo for sure I have help from an endocrinologist. Finally! So maybe this inflammation is a blessing in disguise. 
I've been "dead" for so long now, haven't been able to work or do anything. Ive missed out on so much, especially with my kids. 
So I think that now when I'm getting help I can pick up my life and start living it again. At least I hope so. And that hope is the only thing I've got right now. I know this can take a long time but at least I'm on my way.


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## Phew

Hi sadface,

I just wanted to tell you a little bit of my story... My thyroid symptoms started about 4 years ago, although I had no idea what it was back then. I just had racing heart, feeling faint and dizzy, sweaty sometimes, but I was extremely fatigued and exhausted! 
About a year and a half ago, my thyroid swelled up and was sooooo painful, I could barely stand the pain! It stayed like that for around 6 months. I still get stabby pains in the right lobe. It took my doctors several months to find out I was hyper. I was even taken off of work for several weeks because I couldn't function. The pain was debilitating.. It started in my neck but then went to my entire body. I was referred to a rheumatologist because my pcp figured it was some type of arthritis. Fortunately, my rhuemy is very versed in thyroid issues and believed me. I had been pushing thyroid issues from the beginning! But no one wanted to check it.

One year later.. I've gone between hypo and hyper. I was diagnosed with thyroiditis, Graves' disease AND hashimotos! Apparently it's extremely rare. As in so rare that only .02% of thyroid patients have it! But it is "apparent" on ultrasound, even though it doesn't ALL show in blood work. The cysts that were reported on my previous ultrasounds are actually holes in my thyroid! I also have goiter on both sides.. I was referred to a surgeon that told me all of this. I'm having a total thyroidectomy on the 27th and I can't wait! 
I do have graves markers (high TSI) but no hashi's markers, which she said was what they expected to see. At the beginning they thought my larger nodes were cancerous because they were "Ill defined and cold" but apparently, that is what they expect to see with my illness. I did have biopsies done on those nodes almost a year ago, they were benign.

Also, I'm with everyone else on this, prednisone is heaven sent. Prednisone will also lower T3, they tell me that I can't have my thyroid blood work done while I'm on prednisone because it'll give them a false picture because it lowers the thyroid hormones. But it does help! If you take it in the morning, you won't have insomnia from it. My resting heart rate it 120-130 without Atenolol, but prednisone has never made it worse. But, it's obviously up to you. You could ask for Celebrex instead? It's better than ibuprofen, but is non steroid, and it doesn't ruin your kidneys or stomach. That's what they put me on because I have been on too much prednisone through this ordeal and I didn't want to take it anymore.

Anyways.. I just wanted to let you know, I've been through so much of what you're explaining that it's like looking back for me. It's never really gotten better, just highs and lows. Keep a close eye on it and definitely "shop around" for a good pcp and endo! It's worth it when you find good doctors! Much peace and love!


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## Sadface

Phew, thank you for telling your story. Boy, that sounds rough!! I hope all of your symptoms will resolve with your thyroidectomy.

I went to the endo today, my 3rd visit. I asked if this is autoimmune or just a passing subacute thyroiditis. There was no real answer to that, she said it's subacute but "can" have autoimmune components to it. Doesn't really make me any wiser. 
She thought I was on the tail end of this hyperfase, I'm going for a thyroid panel in two weeks. And I'm going back to the endo in 6 weeks. So I'm on my own here and just need to tough it out. 
My anxiety is through the roof, it's like I now have developed a fear of going out. I've lost a lot of weight since this all started too. This really sucks so much I can put words to it. I cry a lot too, the tears can just start out of nowhere.

I do suspect this is way more than subacute and passing. I've been feeling terrible for a very long time way before my thyroid swelled up. I think this is just a symptom of that. It wouldn't surprise me if this turns out to be Hashimotos. But the road to a certain diagnosis seems far out.

What I'm scared off is that they will leave me hanging when I'm going into the hypofase. The endo today hinted towards that she wants to see if my thyroid bounce back on its own first before I get any meds. And I only get help if my numbers drop too low. Which acctually terrifies me.

My thyroid doesn't hurt at all the way it did just a week ago. I can swallow without pain now. But I still need to take Ibuprophen and Tylenol several times a day since i still get headaches and a feverish feeling. I didn't even think about Celebrex or I would have asked today. I won't see her again until July 30 and I've given up asking my PCP for help, he just don't want to see me. I still take Atenolol even though my heart doesn't beat hard the way it did in the beginning.

The worst is, I can't do anything. I'm only switching between my couch and the bed. I have no strength at all, it's hard to even keep my back straight, I'll have to lean backwards all the time. It's hard to stand up for a longer period of time and it's hard to walk, my knees are wobbly and I'm going out of breath. And the night sweats are still intense.

Please let me know how you're doing after surgery. I can understand your very exited. I wish you all the luck in the world!!!


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## Sadface

Just a little question; in a week I will go for my thyroid panel. I'm worried about this being autoimmune, so I called up the endo and left a message, asked if we could do a thyroglobuline AB test at the same time. But her assistant got back to me saying no, it won't do any good anyways.

Why? Why won't antibody testing do any good? Isn't that the way to find out if you have an autoimmune disease? The ENT doc I went to in the very beginning said this might be Hashimotos, so did the radiologist. So what are we waiting for??

I just don't think healthy people get a rapidly enlarged painful thyroid from out of nowhere. Especially since I've been feeling hypo ever since my hysterectomy. This is not "just a virus", since I was never sick with a cough or a sore throat before this started. 
Why is it so hard to get them to investigate? Does it become too complicated for doctors so they rather just don't do anything?

I still feel really sick even though the thyroid doesn't hurt like before, now it's just big and hard as bone. I still get fevers if I don't take ibuprophen every six hours, and a massive headache and a sore pain throughout the whole body, like deep in my bones. 
Yesterday I went and bought Naproxen Sodium to take instead of the ibuprophen since it feels like I've used it too much. I still take Tylenol as well, maxdose every day. 
Is this really normal? If this was "just a virus"? Shouldn't I have started to feel better by now? 
I'm so weak and the depression is eating me alive now. I still take the Atenolol but instead of 50 mgs twice/day I try to take only 25 mgs/day, which works pretty good. But I still need 50 mgs some days, especially if I need to go out and do chores. 
But I definitely think my thyroid levels are going down.

I can drive back to that independent lab and pay for my own TGab testing and maybe even TSI (49 dollar each) but it feels like my doctor won't do anything even if it would come back high. 
I'm really losing hope of ever getting better. And that drives me into panic, because if I can't work, soon, I don't know how I will survive. Sorry for the rants, but I'm getting desperate.


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## creepingdeath

I would call back and insist on talking to your Endo personally.

I don't see why they could not do the tests you the patient requests.

It's not going to cost them or you anything being on Medicaid even if it won't do any good.

Remember even if you are on State run medical insurance you are in control.

These Medical professionals work for you.

I have autoimmune thyroiditis "Hashimoto's" and all my antibodies are high in the thousands but my thyroid does not hurt.

The rest of my body does because my levels are way off and not right yet but never had pain in my thyroid even though it is very large (seven cm both sides).

I also never have a fever.

From what I studied Hashimoto's is usually a painless inflammation of the thyroid gland.

You just might have thyroid problems related to a virus because of the thyroid pain.

Trust me....... I know this all comes from wanting to just feel better.

But you need to stay calm and be patient.

Getting frustrated only causes stress............

And everyone on this site can tell you stress isn't good when you have a thyroid problem it will just make things worse.

I'd give this Endo a chance and if you are not satisfied look for another.

PS> Maybe try contacting your State Medicaid office.

Maybe they would reimburse you for independent lab work.

It couldn't hurt to ask.........


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## Andros

Do you have insurance? If you do, it sounds like they are controlling the purse strings here.

Thyroglobulin and Thyroglobulin Ab would be awesome and would go a long way to ruling in or ruling out cancer. Start using the cancer word to your doctor. See if that gets any positive reaction. I would say, "You have a legal responsibility" to rule that out or in.

Take someone with you as a witness.

Don't get me started. Yikes!


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## Sadface

Thank you both for responses!

I will ask my doctor at my next visit exactly why we shouldn't test my AB's. What's the reasoning behind that. And if she just refuses I will drive back to the independent lab and do them out of my own pocket. It would be nicer to do it here close by as this lab is 60 miles away.

I have Medicaid, I just got on it. So that might have something to do with not testing, I don't know. But I've heard lots of problems now with this state insurance and segregated treatments due to having it. But I won't be judging yet though, I do like my endo and I just need to hear her explanation first.

I've asked several times now if this could be cancer and she has always said no, it's not cancer. I've never done a biopsy so I'm not quite clear in how she can say that with such certainty. Since my thyroid doesn't hurt anymore I might ask for a biopsy even though I'm afraid I already know the answer will be no. Even if I say I really want to rule out cancer.

I'm going in for my thyroid panel next Wednesday, I'm curious about the results. One thing I've noticed on the lab order is that she ordered the TSH, FT4 and total T3 instead of FT3. I thought the totals are considered outdated and doesn't tell anything?


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## creepingdeath

I doubt it is Medicaid.

Your Doctor has a reason for not running those tests.

The only thing Medicaid will question is something like a CT scan or MRI.

It will have to be approved by Medicaid first.

These tests are very expensive and they "Medicaid" and primary insurance have there own Doctors look at your records to deem it medically necessary.

I mentioned cancer to my Endo and he said no also.

I do not know how he can be so sure either.

I did do a lot of research on the Endo I see and have found out he has an excellent background with many years of experience.

He is also pretty much the best Endo in the County and is the head of Endocrinology not only in the hospital I go to but also two others in the area.

So I am going to trust his opinion greatly.

I also have TSH Free T4 and Total T3 done along with antibodies.

I do not know what the difference is.


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## Sadface

I'm gonna ask for the reason(s) at my next appointment. 
My endo doc seems nice but she has only practiced for 2 years. I'm sure I'm the only case like this she's ever seen/treated since it's so very rare (my luck...)
I just want to be active in my care and my way to getting back to health. And that involves ruling out antibodies/cancer, especially since all the doctors I've met so far says this is most likely autoimmune. 
I'm also scared of how low in hypo I'll have to go before she helps me with meds. I've learned it's really bad for the TSH to get too high since any possible AB's will have a field day when that happens. And if I don't even know my AB's...
It seems like some doctors tests for everything and some are very conservative. Some count in the patients clinical symptoms, some don't care and give you antidepressants. Saying it's all in your head.

Well, only time will tell what's gonna happen next.


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## joplin1975

Total t3 is the total amount of t3 in you blood, but some of that t3 is bound and not available for use. Free t3 is the measurement of unbound hormone that your body can use. So it's important to look at the frees.

http://thyroid.about.com/cs/testsforthyroid/a/freet3.htm

In normal thyroid function, as the concentrations of the carrier proteins changes, the total triiodothyronine level also changes, so that the free triiodothyronine concentration remains constant. (In an abnormally functioning thyroid, this is not necessarily so). Measurements of free triiodothyronine (Free T3) concentrations, therefore, correlate more reliably with your clinical status than total triiodothyronine (T3) levels.


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## Sadface

Yesterday I went in for my blood test, I signed up for the hospital web page so I can view my own records. And the test results are back as followed;

TSH: 0,02 (0.47-4.68)
Free T4: 0,82 (0.78-2.19)
Total T3: 1.80 (0.97-1.69)

So my TSH is still very low, the FT4 looks like it's borderline low but my Total T3 is too high. I have no clue what my unbound FT3 is but I assume it's too high as well.
How can this be? I've read the half life of T4 is 6-7 days and T3 is even shorter. Unless my thyroid has repaired itself somewhat and working but that still don't explain the low FT4 and high T3.

My next endo appointment isn't until July 30. And this past week I have started to lose hair in the shower
when washing, clogging the drain. Up until now I've hardly lost any hair at all, last years severe HL stopped abruptly in December, same time as my "hot flashes stopped. I think it was I started to take 2000
IU of daily vitamin D3.

Physically I feel much better now. I'm still drained, have low energy. But I don't feel sick-ish, not as a few weeks ago. I've pretty much stopped the ibuprophen/naproxen and if I feel a headache coming on I use
Tylenol only. I still take 25 mg Atenolol pretty much every day. But my pulse is way weaker now and don't seem to run away like before.

So, does TSH only respond to T3 levels, is that why it's still so low? Or could this be Graves disease 
after all, or Hashitoxicosis and the uptake scan was low due to the current distruction of the gland?

I still don't understand not testing antibodies, especially due to my family history. And July 30 is such a long wait to not be able to ask questions. I guess by then she (endo) will order another thyroid panel to see my status then. I just hope this means my thyroid is repairing itself, I don't have any autoimmune disese.
My thyroid is still enlarged, much more so on the right side and feels very hard. I'm not quite sure but I think it might have gotten somewhat smaller though or it might be wishful thinking. You can visible see it still on my neck.

I'm very happy the terrible pain is gone. Now, if I could on,y get my mojo back so I can live my life to the fullest.


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## Andros

Your instincts are excellent. Listen to them 100%!

T3 could be high because of bound, unbound and rT3 (reverse T3.) As you already know, the FREE T3 test would be more telling.

Sending hugs,


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## Sadface

Thank you Andros! 

My instincts tells me to go get all the necessary antibody testings myself. But they also tells me they will be ignored even if positive.

I'm acctually more scared of not getting help from the medical field than I am of having a disease. And the more I read about others thyroid experiences, I'm not alone.


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## creepingdeath

Sadface said:


> My instincts tells me to go get all the necessary antibody testings myself. But they also tells me they will be ignored even if positive.


I think you should follow you instincts and get those antibody tests to ease your own mind even if they might be ignored by your Doctors.

Just knowing those results may make you feel even better .

Sometimes you have to be your own advocate.


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## Sadface

Creepingdeath, yes, I might drive down there next week. Just to rule it out at least and put my mind to rest. Or it will just nagging at me, the possibility.

So, I should test for TGab, TSI. Anything more? Should I repeat the TPOab even though it was at 10 in the beginning of May, thus low? Should I test for TRab? (if available at the lab) Since I'm down there I might, just might, splurge on a repeat thyroid panel, FT3 included. I'm also interested in the reverse T3 ratio.

Ten years ago I also had slightly too high cholesterol even though I was an avid runner and very healthy eater, just having a very healthy lifestyle. But there's never been any follow up on that. Now I've learned thyroid disease can cause elevated cholesterol levels. I don't think I can afford paying for too many tests myself but I will insist, for what it's worth, to have my endo checking it. If she refuses, I guess I can go to my PCP and have him do it. I'm 44 years old, it shouldn't be too weird to want to check your levels then, right?

I just need to work myself up to drive that far, lol.


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## creepingdeath

I am as new to the way thyroid tests work as you are.

All I know is I had three antibody tests done and two of them were very high "in the thousands" (TgAb) and (TPO)

(TSI) was in range "95" I think. This should be tested if you are hyperthyroid.

Someone else may chime in and let you know which tests to choose.

The reason I suggested you have them done is because I know how something like that can eat you up inside not knowing.


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## Sadface

Thank you, I think you just confirmed what I should test for. 
I've heard one should not have any TSI at all, did your doctor said anything about that to you?

I'm sure my endo is going to want a new thyroid panel done at the end of the month at my next visit. If my TSH keeps on being in the basement I'm not sure how she will go about this whole thing. It's like a waiting game, like yes, I will (should) get over this because the textbook says so. But I don't think "healthy" people get sick in their thyroid like this without a reason, especially when there were never a virus prior to this. But there were all the clinical symptoms of hypothyroidism (hence my life's been on hold for more than a year now) I do kick my self for not getting a thyroid panel done last summer when I got really bad.


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## creepingdeath

No Sadface, my Endo did not say anything about TSI.

He just said You have autoimmune thyroiditis and need to start taking replacement medication again or you will eventually die.

I ask "is this Hashimoto's? And he said yes"

These were the results of the thyroid panel done a couple of months ago.

TSH *28.63 **H *reference 0.40 - 4.50 mIU/L

T4, free *1.0 *reference 0.8 - 1.8 ng/dL

T3, total *121 * reference 76 - 181 ng/dL

Thyroglobulin antibodies "tgAB" *2985 H* reference <20 IU/mL

Thyroid peroxidase antibodies "TPO" >*1000 H *reference <35 IU/mL

Thyroid stimulating immunoglobulin "TSI" *95 * reference <140 % baseline

I know all about the waiting game.

I am still waiting for this Levothyroxine to bring me back to my old self.

It takes so long to get your labs where they should be.

And the last time I took the medication and labs were OK I did not see much of a relief of my symptoms.

I might need to ask to try natural thyroid med's but it seems that can be a challenge in it self finding a Doctor who would be willing to prescribe it.


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## Sadface

No wonder you feel aweful with such high TSH and high AB's. I've heard that the AB's tend to go crazy the higher the TSH is, that's what my sisters (who has Graves) endo told her. He said it was important for her to keep her TSH down or her eyes will get attacked. But I don't think she has any other AB's than the TSI/TRab.

She's back in Europe though and they test her thoroughly, all the time. She sees her endo at least once a month and her family doctor once a week that keeps a very close eye on her. She thinks they kind of fussing too much over her and I tell her I'm jealous over the care she's getting, lol. No one is ever really happy, huh... She did tell her doctor about my case and she's appalled I'm not getting tested for AB's, lol.

I know time will tell, but it seems like my life is just passing me by, slipping through my fingers. It's like there's me on the couch, withering away, and there's the wonderful life going on outside my window. Sometimes I'm just breaking down, crying over that fact. That I'm missing out on life. And I feel like a crappy mom since I can't do anything fun with my kids anymore, it's so depressing.

Yes, you should ask for Armour, I've heard people's life's been completely turned around by it when the traditional meds seemed to make them even sicker. You should call up Medicaid and ask for their list of endos who do prescribe it and get a referral. At least so you get to try it, to see if it makes a difference. Or you too will keep on wondering what if. 
But I do hope you'll feel better and stronger soon. Get that "spunk" back that gives us energy and appetite for life. I know I sooo miss it, I could give my right arm to get it back.


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## Andros

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

It is true; the patient should not have any if they are in a healthy state.


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## Andros

You have had an ultra-sound, correct?


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## Sadface

Yes, I've had 2. The last one the radiologist was there himself (my endo wanted to rule out an abcess) and he said right away "this is autoimmune, it almost always is". 
That was when my thyroid was very painful and the right side had ballooned up as well and looked like a "dog bone" on the US.

The first US showed an enlarged left side and nodules, also several nodules on my right between 6-8 cm large. And "concerning" lymphnodes surrounding my left lobe. But then again, during the acute painful stage of this, both sides of my neck were surrounded by swollen lymphnodes, it was like I had 2 bands of very painful lymphnodes covering my whole thyroid.

The nodules they found could have been my thyroid swelling up I guess, looking like nodules. But I will ask for a repeat US when and if my thyroid ever go back to normal size again. The ideal would be to have it biopsied but I don't think that is up for debate anymore.


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## Sadface

Hi all, long time no see. 

Things are changing. Just got my latest thyroid panel back and yes, I'm low. No wonder I'm dragging my feet.

TSH: 32.50 (highest ref.range: 4.98)

FT4: 0.21 (lowest ref. range: 0.78)

Total T3: 0.69 (lowest ref. range: 0.97)

My symptoms now are I'm turning into a puffball. I have huge bags under my eyes, my whole face is puffy (love the lips though) 
I'm tired all day, I don't really "wake up" until 6 pm. I still don't feel like doing -anything-. I have managed to go for longer walks every evening though which I love.

But, this is still way, waaay better compared to how terrible I felt when my levels were skyrocketing. That anxiety/panic feeling...brrr...I never ever want to experience that again, or the sweats.

I don't have an appointment with my endo until 3 months from now. I hope she will give me thyroid replacement meds but I'm afraid she will make me wait. Just to see if my thyroid will bounce back on my own. But when I read about other people who are going through the hypo fase, they'll get meds as soon as they're going low, no if's or butts about it. Then theyll just go off them if and when the thyroid comes to life again.

Another thing now is, my skin is super super soft. After starting taking 3000 mcg of Evening Primerose oil daily my hair is now silky, soft and just wonderful too. Is my soft skin just a remainder of my hyper fase? I used to have dry, cracked skin before all of this started. And I always thought hypo will do that to you.

Anyways, I'm hopeful, very hopeful. I hope I get meds soon and can get my energy back!!! Another thing, every time I'm standing up from sitting, it goes black infront of my eyes and I have to hold onto something and wait a few seconds before I can move and see again. This started like one month ago. Is that a hypothing too?

I never drove to that lab for antibody testing, I've just haven't had the energy to do so. Well, now I know why, lol.


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## creepingdeath

I was wondering what happened to you....

Wow`

You are now extremely hypothyroid.

*Welcome to my world.*

You need to be put on thyroid Med's now...

The longer you are without thyroid replacement the worse your symptoms will get. It slowly builds up....

And the harder it will be to get rid of them.

Sight going dark when standing up... Sounds like you are on the verge of passing out.

And that is a hypo thing. " I've been there , done that " ~ I still get dizzy when standing.

I would call this Endo and find out what her plan is............

TRUST ME...............

You do not want to get to where I am at now...........


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## Sadface

I just called my endos office (she doesn't work Fridays) and made an appointment for next Tuesday morning. To discuss meds. Or rather: demand meds, lol.

Yes, I think this extreme thyroid swings I've had now do have a certain time delay to itself, symptom wise. Hence I'm having great skin right now. But you're so right, I don't want to wait this all out and get to feel the true wrath of hypo as well.

I always said that if I'll ever need meds I will argue for Armour. But honestly, right now I'm too tired to argue for anything and will be happy to just get synthroid or whatever it is the scholar medicine text book is praising. And I still hope my thyroid will recover in the long run so I don't need any meds at all. Only time will tell I guess.

How fast did you start to notice a difference in your symptoms after being put on meds?


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## joplin1975

Armour is an awesome drug, but its not right for everyone. All that t3 can be very dangerous, especially for hyper-converters like me. I'm very grateful that for various options, but feel strongly that choices regarding those options should be supported by labs and symptoms.

FWIW, my TSH was 121 after my surgery. It took about eight months for it to come down and my frees to get back into normal range. Those were some rough months. I think the advice to get on meds is really good. Once things get so out of whack, it takes forever to get them back in range.


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## Sadface

The all time worst with this is the knowledge that there's no quick fixes. Eight months sounds so...looong...Even just a few months sounds like an eternity right now. How I miss living my life!!!

I still believe I've been hypo since last summer and something in that triggered this thyroiditis. Probably antibodies.

I don't think my endo even wants to touch Armour with a 6 ft pole but I will definitely bring up the subject on Tuesday,

I must say I don't feel at all as depressed now as I felt when I was in the midst of hyper fase and raging inflammation/illness. It's like I've gone from being a severly sad Igor to just a very tired (and puffy) Igor. The lack of motivation is still there, unchanged. 
But before I had that constant feeling of despair, as if I was afraid of something terrible, like a knot in my stomach. I woke up every hour on the hour every night in panic. I can't tell you enough how wonderful it is all of that is gone now.

Thank you both for replying to me!


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## creepingdeath

Sadface said:


> How fast did you start to notice a difference in your symptoms after being put on meds?


For me I noticed only a slight difference in maybe a month after taking synthroid.

But I think it is because I have been hypothyroid for many, many , years. Probably since I was a teenager.

It took me along time to get this way, it will probably take along time to get normal again , if it is even possible to feel the way I used to.

I have been on a low dose of synthroid 75mcg for more than two months and really don't feel much of a difference.

The clinic I go to had a shooting and someone was killed the day before my appointment on July 25th.

The clinic was in lockdown for a few days. So my appointment was cancelled.

I can't see my Endo till the end of September. He for some reason does not take my phone calls directly.

I have to communicate with him through this clinic.

I told them I wasn't really feeling that much better and he just had them switch me from generic to name brand synthroid and see what happens.

No blood work or increase till I see him at the end of September.

This Endo said I may have been given too much synthroid too fast the first time I took it so I agreed to try it again.

But I truly believe synthetic is not the right replacement for me.

I wanted to talk to my Endo about natural but will have to wait till I can see him again.

My PCP got kind of angry when I even mentioned Armour . You would think I was asking for Heroin or something.

I hope this Endo will at least let me try the natural form if this synthetic does not start working.

Your Hypothyroidism may or may not be temporary.

But if I was you I would not take that chance.


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## creepingdeath

Sadface said:


> I woke up every hour on the hour every night in panic.


I have been getting this same symptom for a very long time except for the sweating.

Instead I am freezing almost hypothermic.

Waking up frequently with this horrible overwhelming feeling of doom.

This has been happening to me so long I have become used to it.

Hypo and hyper symptoms, I think are not all that different.

Another reason to get on replacement therapy.

You may just be in the eye of the storm and eventually head back into that panic state.


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## Sadface

Creepingdeath; Yes, I think many of the hypo/hyper symptoms can be identical. I just cherish every day that I don't have to feel that anxiety, it was simply unreal.

I don't freeze (yet) but I've noticed I don't need to set my AC so low now. Before I set it at 73 and was still hot, now I'm fine at 78. At night time I turn it off completely and open up all windows for a nice cool breeze, as our night temps here differ quite a bit from the hot summer days. And I do sleep under a thick comforter.

Wow, crazy shootings seems to happen all the times these days here in the states. I'm glad you weren't there that day!!

And sorry to hear you'll have to wait that long to be seen. Gosh, this whole thyroid business is like pulling teeth when it comes to everything it entails. Why??? Should it really have to be like that? Sometimes I wish the doctors should "artificially" have to go through weeks with the very same diseases they're trying to help their patients with, just to gain some sympathy and full understanding.

Are you allowed to take stuff like kelp? Do you think that would help? I have some here at home thinking I might try some.


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## creepingdeath

Hopefully you will stay the way you are and not get anymore hypothyroid.

Every room in this house is air-conditioned except my bedroom.

I cannot tolerate it.

I also have been wearing long underwear all year round for at least the last 3 years.

And I am still cold. So cold it becomes painful.

My family calls me the snake and that I am cold blooded.

They are all tired of me complaining so I don't really mention to them anymore how I feel.

One of the reasons I joined this forum. to communicate with others who know what I am going through.

No one knows what this is like till they stand in our shoes.

Everyone looks at you including Doctors, like you look fairly normal on the outside

but on the inside your body and mind are being Tortured by this disease.

No one not even Doctors take this disease seriously.

They think you are overly exaggerating your symptoms.

I am actually still being check for other things.

My symptoms could still be from something else but everything so far is negative except "Hashimoto's"


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## Sadface

I've always had cold hands and feet too, my whole life. And the first one to freeze, when others are sweating bullets. But never like what you have, chilled and frozen down to the very core. As if ice is being made in your bone marrow. Do you use electrical heat blankets? (I bet you do  ). I love those in the winter times. But my understanding with conditions like yours they still might not be enough, since the coldness comes "from within".

I definitely don't look normal right now, lol. My face has changed drastically, I look weird. And friggn ugly. I refuse to go out without my glasses on, just to hide my enormous eye bags. My whole body is jiggly, my kids tease me (lovingly) about it. I think it's water retention, I remember when I was pregnant and swelled up with fluids it was kind of the same. Just that I peede it all out in less than a week after giving birth and returned to looking human again. This time...not so sure.

I'm just so grateful I found out about Evening Primerose Oil after I noticed my hair started to fall out beginning of July. After a week use it completely stopped, now I loose like one strand a day. Or I would probably have been bald now on top of it all. 
One way to put it; I feel esthetically challenged!!!  But all looks aside, really, when you feel as if death is knocking on your door on a daily basis for too long, all you pray for is that feeling of health again. Energy. All the rest will follow with time.

I pray for you that you'll find out what's going on with you and you can get your life back. And that you'll get the best care possible. 
I did check out Medicaids rules and we're allowed to second opinions or change doctors if we don't get the care we need.


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## creepingdeath

Oh yea I sure do have an electric blanket.

I do not need it in the summer though. Just a lot of blankets.

The worst part of my body that is cold is my legs.

I have actually lost most of the hair on them also.

I was checked for artery disease which was negative.

I have excellent blood flow and pulses in the legs.

They say it is my thyroid causing it.

I have that puffed up face when I get up in the morning but it goes away after a few hours but the bags under the eyes are always there.

I do know women have a lot more hormones floating around in there bodies, maybe that's why ladies complain more about water retention then men do with thyroid problems?

And for me being very hypothyroid I have no problem with my weight.

Everyone always tells me I am skinny. But I am perfect weight for my height and age.

I just wish I didn't get these really bad sore muscle and joints after doing anything physical.

My muscle tone is nowhere near the way it used to be from avoiding physical activity because of the pain that has become associated with it.


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## Sadface

My muscle tone is terrible too after been laying down pretty much the whole summer. I did loose a lot of weight when really sick but have now gained some of it back. But it's not muscle (sob). That's why I've been trying to go almost every night for walks, it also cheers me up because it's so beautiful outside and I've been seeing a family of deers with three so, sooo cute fawns several times.

I was hoping to start working up to start working out and running. But I don't think that will happen for a while. My understanding is hard workouts just wears out the body anyways when very hypo, the body can't really build muscles. 
I can't wait to feel free and well enough to do what I want again. It's like I'm in a prison cell right now.

I do eat healthy and definitely not too many calories. But I'm still jiggly. My bmi is around 20 so I'm not overweight but I don't like my body right now, not one bit.

Have you ever tried MSM for joints? It's suppose to be really helpful for sore ones. My knees started to hurt some lately but I thought it was because I started my walks. It might be a combo of that and going hypo. It hurt mostly when I walk up or down stairs. It doesn't hurt when I'm not moving.


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## Andros

May I suggest to you that you insist on an appt. now; you should not have to suffer like that and hypo can be just as damaging as hyper.

We will all worry until we hear you are on thyroxine replacement. You have been through waaaaaaaaaaaaaaaaaaaaaaaay too much with all of this. Way too much!


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## creepingdeath

Sadface said:


> Have you ever tried MSM for joints? It's suppose to be really helpful for sore ones. My knees started to hurt some lately but I thought it was because I started my walks. It might be a combo of that and going hypo. It hurt mostly when I walk up or down stairs. It doesn't hurt when I'm not moving.


I have tried so many things over the last three years and nothing helps. The whole top of my dresser is filled with vitamins , over the counter pain med's and so on.

Most of it does very little or nothing to help.

The underlining cause needs to be taken care of or you are just masking your symptoms.

My muscles in my legs and knee pain was the first part of my body effected by the hypo.

It will eventually spread to other parts till every cell in your body hurts.

I wasn't able to get treatment for a couple of years after this all started.

Probably the reason it is taking so long to feel any relief.

The longer you are hypo the longer it takes to get better.

Sadface:

Get whatever help you can as soon as you can.

Jamie~


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## Sadface

Andros; thank you. Yes, I made an appointment to see my endo this coming Tuesday. She did say before that I will get replacement meds if I go too low. And I think I am at that point now. 
She also said that she would like to see if my thyroid would bounce back by itself and that meds can make it lazy. But I think she meant that she might hold off on meds if I just go slightly under the ref.range. So I'm pretty sure I don't have to fight on Tuesday to get meds. 
How often do you think I need to do a thyroid panel when starting meds? Is it still every 6 weeks?

Jamie; Do you get any stronger meds for your pains? No one should have to go through life with those pains. And there are really good painmeds out there that help people tremendously. To be in constant pain wears on your whole body and spirit. Especially if there's no end in sight.
When my thyroid swelled up and hurt like crazy despite being on massive doses of ibuprophen and Tylenol I knew that it would be over at one point. But still, it really brought me to my knees. I was in sort of a fog of despair. It sounds weird now, but sometimes I wished that I would just have dropped dead. It -felt- like there just was no end in sight. 
If I ever get this back again, I will ask for the strongest painmeds out there. No way I ever go through this "sober" again.


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## Andros

6 to 8 weeks is good for the panel and further titration as needed. I like the 8 week mark better because I believe the system needs that time to really adjust to the dose and show the true picture via labs.

Let us know what happens Tuesday!

Hugs,


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## creepingdeath

Sadface said:


> Jamie; Do you get any stronger meds for your pains? No one should have to go through life with those pains.


Sadeface,

The only thing I was prescribed was ibuprophen 600 mg.

I was prescribed it because they thought I had pleurisy because of breathing issues.

It does help a little bit but I still always have a good amount of pain throughout my whole body.

Weakness and pain are the reasons for the shortness of breath.

My whole ribcage hurts all the time.

I have been thinking of asking for some sort of pain med's but a little afraid the Doctors will think I am an addict looking for dope.

I also do not want to become dependent on pain med's either.

I may be going on a vacation next month and think I may call my PCP and ask for something to bring with me.

Last year I went with my Family and couldn't really enjoy myself because of feeling sick and in discomfort.

I stayed in the motel room most of the time while everyone else was enjoying themselves.

It is horrible not to feel well on a vacation.

Jamie~


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## Sadface

Andros; thank you for your answer.  I will definitely update my status.

Jamie; You should be able to get something stronger especially if it's short term. Of course you should be able to get to enjoy your vacation. And that doesn't lead to addiction.
But yes, I think in these days of age the hype about prescription painkillers is forcing people to suffer in silence. I think the DEA has put so much restrains on the doctors they're afraid to prescribe them. But, there are just situations that calls for drastic measures.


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## creepingdeath

I have been telling the Doctors about this pain even last year when my thyroid levels were supposedly in range.

My PCP said if your levels are within in range then it is not your thyroid causing the pain.

But after many tests and studies my thyroid is the only thing they can find wrong.

And they never offered any pain medication.

I don't think they believe a thyroid issue can cause this kind of discomfort.

I can take a lot of pain but when it becomes long term you can only take so much.

About six years ago I had a lot of bad teeth pulled all at one time.

I was given a prescription for pain med's I didn't even ask for.

I didn't even use them and gave them to my older brother who has a bad back.

This is different, an almost constant ache throughout your whole body that even disturbs your sleep and gets way worse when doing anything physical.

If I do decide to ask for pain med's and my PCP refuses to give me any I will be looking for a new PCP.


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## Sadface

Jamie, if your PCP isn't comfortable prescribing painkillers for long term he should refere you to a pain management clinic. And let them evaluate. You can sign legal painmed contracts with them. And that way it should be easier to get the help you need.

Or there might be something else very helpful they can help you with since they know the business. Many pcp's aren't really updated. But bottom line is that no one should be forced to live with debilitating, chronic pain. It's their job and responsibility to get you the best help for you.

Even though it might not cure the cause for the pain, you will still be able to live a much better life.


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## Andros

Myopathy from hyper.
http://www.medicalonly.com/2007/07/27/thyrotoxicmyopathy_hyperthyroidism
(Copy and paste into your browser)

Myopathy from hypo
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1010480/
(Copy and paste into your browser)

peripheral neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
(Copy and paste into your browser)

http://www.suite101.com/content/thyroid-disease-and-neuropathy-symptoms-a140669
(Copy and paste into your browser)

I am kind of late to the party here. Just read your post. You may find some of the links above interesting and let me tell you from first-hand experience, thyroid disease does in fact cause pain. For years I could hardly walk, my feet were so painful. Hip pain, shoulder pain, carpal tunnel syndrome and TMJ to name but a few of my very own experiences.

Once I got on Armour and was properly titrated which did in fact take about 2 years, "all" my pain went away, never to return.

So, yes.........................there are other reasons for pain; no question of that. But??????

Let me see your most recent results for FREE T3, FREE T4 and TSH. Please provide the ranges as well.

Hugs to you....................


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## creepingdeath

If you are referring to me Andros, The last lab's I had are posted in this thread.

They were done in May after stopping all med's for 5 months.

I haven't had lab work done since being put back on 75mcg of Levothyroxine after these labs in May.

I was being treated by my PCP before stopping med's and may have been over medicated by him. I was referred to an Endo.

My appointment with my Endo was canceled at the end of July "8 weeks" because a mental patient killed someone at the clinic I go to.

My next appointment is at the end of September.

I did get in contact with my Endo an he changed me to name brand Synthroid with no increase in dose and no lab work for another two months.

I do not understand why he did not order lab work.

Probably because of the change from generic to name brand.

This is the lab work from May.

I do not feel all that better being on this dose of synthetic med's since May...and I feel no difference so far with the change to name brand.

I am sure my lab's are not all that different from these on this small starter dose.

Jamie~

TSH *28.63 **H *reference 0.40 - 4.50 mIU/L

T4, free *1.0 *reference 0.8 - 1.8 ng/dL

T3, total *121 * reference 76 - 181 ng/dL

Thyroglobulin antibodies "tgAB" *2985 H* reference <20 IU/mL

Thyroid peroxidase antibodies "TPO" >*1000 H *reference <35 IU/mL

Thyroid stimulating immunoglobulin "TSI" *95 * reference <140 % baseline


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## Andros

Oh, my gosh!!! You cannot feel better w/those antibodies so so high like that!

I now remember about the clinic shooting etc.. Please forgive me as I try to answer so many queries that at times, I do need my memory refreshed.

You simply must get that thyroid out.

Jamie; can you get your appt. bumped for in lieu of someone else canceling?

Hugs,


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## Sadface

My endos MA just called and let me know my labs were low, which I already knew. She said the doctor wants to continue to monitor my levels and wants me to have new labs done 3 weeks from now.

So, no meds at this time. I just called the front desk and cancelled the appointment for tomorrow morning since there's no point to it anymore. And I hope my thyroid levels go up by themselves now.

I asked that if the next blood test turned up extremely low as well if I then will get help, but the MA couldnt answer that.

So...what can I do to kick start my thyroid myself? If it is scarred it's just dead and there's simply nothing do do about it, but if it's just repairing itself right now from the inflammation, what can I do/take to aid it? 
Eat a lot of iodine rich foods? Kelp supplements?

And I agree with Andros. Jamie, I think the best for you is to have a thyroidectomy. But I think you told me once that Medicaid doesn't approve for one if the situation isn't life threatening. But there's just have to be a way for you to get the proper care.

Find out if your state has an Indigent Care Program. And apply. The copayments are income based and can be higher than Medicaids but still very doable. Or apply for this Obamacare when it opens up again in November and somehow deal with those costs until you get the thyroidectomy. Perhaps you could borrow some money from a friend or family. Beg, steal, borrow is sometimes needed 
But I do believe it's those antibodies that makes you feel like creeping death.

I've also heard people "cure" their own Hashimotos simply by excluding -all- gluten and white foods from their diets. No more sugars/chemicals and such. That's when their AB's are drastically reducing in numbers and they're starting to come around.


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## creepingdeath

Boy , I wish things were as simple as what you both suggest.

You have to understand my situation.

I have no job or any prospects at this moment.

I do not even trust myself driving anymore.

I have literally not a pot to piss in and my 87 year old Father is supporting me.

Even this computer I am typing on is my Fathers.

Gluten free??? A special diet??? I am very lucky I even get something to eat every day.

My Father can not afford to pay for me to be on some special diet.

I am on State run Medicaid "medical assistants, that's all, and you just can't say I want to have my thyroid taken out. It does not work that way.

The Endo I see is pretty much the best in the area and stated the only reason for my thyroid to come out would be compressed trachea "I do not have" or cancer.

The ultrasound shows two very small sub centimeter areas other than that my thyroid is just very enlarged which does get smaller with synthroid.

I am actually thinking of applying again with the State and ask for cash assistance so I can at least give my Dad something every month or buy a new pair of shoes when needed. And so I don't have to ask my Father for a few bucks to pay the Medicaid Co payment every time I see a specialist or get a prescription filled.

Asking makes me feel worse than my physical symptoms, "very depressing".....

If I were approved They would give me something like $250.00 a month. "It's better than nothing"

If I tried to apply for SSD or SSI I am sure I would be turned down.

I am not disabled and am able to do things around the house for my Dad but I am not enjoying myself with all this pain and discomfort.

It also takes much longer to do anything.

Pain and discomfort is a distraction.

Combined with extreme brain fog I almost always find myself trying to figure out how to do things that used to be second nature to me.

If I got a job and could work my way through the physical discomfort I do not think I'd last too long wondering around in circles and forgetting what I am doing.

I had to change PA Medicaid insurance provider because the hospital no longer takes the first one I chose.

It does not take effect till September 1st.

My Endo only sees patients at this clinic the last Friday of every month so September 26th is the soonest appointment I can get and those days are packed with patients.

I may look into a different Endo I could maybe see more often but the closest that takes the Medicaid insurance I have is quite far away.

I would have to use my Dads car and set up appointments around when my Father is not using his vehicle.

My Father has health issues himself and sees way more Doctors than I do.

I can walk to this clinic I go to.


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## Andros

Tch! No one should have to go w/o medical care. No one! There is something very wrong w/this picture. On the bright side; maybe this endo would know someone who would do the surgery gratis. I have seen many many miracles in my life-time and there are some really really good and very caring doctors out there.

Praying for a miracle for our friend on the board!


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## Sadface

Yes, I understand it's tough. And yes, you should definitely apply for cash assistance.

And cutting out gluten, (white) sugars and chemicals is less complicated than it sounds. And doesn't costs anything extra. You don't even have to buy expensive gluten substitutes. And you can make dirt cheap healthy and gluten free soups and stuff. It's worth a try for a few months to see if you're feeling better, but of course you don't have to if you don't want to. 

And if you're starving, not getting enough to eat, that will directly affect your metabolism and thyroid in a negative way.

I know what you mean with not being able to work. I haven't been able to work at all since I finished my education. Everything went south after my hysterectomy, before that I was a bundle of strong energy. If I would get a job right now I wouldn't last a day. And the no job thing adds to my anxiety. It's nerve wrecking.

So what's your endos plan to reduce your high AB's or doesn't she/he see them as a problem?


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## JasonJay

Hey sadface,

I cut out gluten now for about 8 days now an already feel a whole lot better. Remember gluten is an inflammatory and thyroid antibodies are an inflammatory disease. So try cutting out gluten for a few weeks and increase protein intake. Win win combination!


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## Sadface

JasonJay, I agree. And I'm happy to hear you're already feeling better! Do you have Hashimotos?

I hope you will just keep on feeling better and better for every day! Did you feel "gluten withdrawal" the first few days after cutting it out?


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## creepingdeath

Sadface said:


> So what's your endos plan to reduce your high AB's or doesn't she/he see them as a problem?


The only plan is thyroid replacement therapy.

I think my problem is my body does not like synthetic med's....My body cannot be fooled.

I think synthroid slows and kills what your thyroid can still produce and replaces it .

It makes all your lab work look good "within range".

But in actuality the synthetic is not excepted at the receptor sites in your cells.

The end result is your symptoms get worse and even new ones pop up and you never get better.

Your Doctor looks at your Lab's and thinks your cured.

Then it is said not to be your thyroid but something else.

Another reason to maybe see a different Endo is this is a clinic I go to at a teaching hospital.

At your appointment you see an Intern or resident first usually a different Doctor every time.

Then the Big Cheese Endo comes in and makes sure the resident is doing everything right.

I might see this Endo maybe at the most 15 minutes. In the end though the Endo is in charge.

But it is hard to get in everything you want to say to him in that short time.

I haven't ask directly yet about natural form of med's but I kind of get the feeling this Endo is all about synthetic.

This will be the first thing I ask at my next appointment.

I am also not starving. all my other blood work "metabolic" CBC, vitamins are perfect.

Also;

My Family would never let anything like that happen to any of our members.

I find it very degrading and embarrassing not to be able to pay my way.

My Father and others in my Family tell me not to worry about it but it really bothers me.

This causes a lot of anxiety.

Jamie~


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## JasonJay

Sadface said:


> JasonJay, I agree. And I'm happy to hear you're already feeling better! Do you have Hashimotos?
> 
> I hope you will just keep on feeling better and better for every day! Did you feel "gluten withdrawal" the first few days after cutting it out?


Yes I was craving breads and pasta and cookies ect... really badly and always felt hungry but just substituted eating protein lots of veggies and fruits and nuts. After about a week I'm not craving it anymore. My muscle tone has improved and I look better already.

I have graves, and my t4 and t3 are within range but I have been getting tons of hypo symptoms that come and go. Since cutting out gluten and supplementing with a great multi vitamin, fish oil, magnesium citrate, vitamin b6, vitamin c, I feel so much better and stronger my symptoms are already much fewer. All of my supplements are high quality, believe it or not they're not all the same so do your research and pick the best ones.


----------



## Sadface

Jamie, I hope you at least get a trial of Armour or Naturethroid. I've heard tons of people responding much better to that than the synthetic stuff. I'm sure some people, as with everything, does better on one thing than another.
I'm afraid I will be put on synthetics as well if my endo ever lets me get medicated at all. Perhaps my next lab work looks better.

Good your not starving, I wasn't sure how to interpet when you said you're lucky to get anything to eat. I'm glad you have a caring, loving family. Don't feel embarrassed, we don't choose to get sick, it can happen to anyone. Family is all we've got in the long run, you would have done the very same thing for them if needed. Your dad seem to love you very much. 
I know my parents would help me at any time, with whatever it takes, if it ever comes to that. I have kids on my own and it's just natural to always be there for them, even when they get older and really need help. I would never see it as a burden or a weakness.

So hang in there. Fight for getting the right to try out the natural thyroidmeds. And to get a doctor to do something about your AB's. Don't let them ignore you. You have every right to get help to the best of their expertise just like anyone else. And do change doctors if one is ignorant to your needs, even if it means you'll have to travel. Call ahead and ask if they do work with natural meds first, just to make sure.
It seems like finding the -right- endo when it comes to the thyroid is the very key to it all. It's like having to kiss a lot of frogs before we find the prince, but in the long run, if it brings us back to quality of life it's all worth it.


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## Sadface

JasonJay; that sounds so inspiring and wonderful. Are you on some sort of thyroid supressing medicine for your Graves now? And thyroid meds for going low? (That's what's happening to my sister right now who was diagnosed with Graves earlier this year)

I'm going to follow your journey here. Please update us all and I'll pray for you your journey from now on will be easy. 

This Graves disease is a wicked disease. My sister is suffering with weight gain right now. First she lost 20 lbs before diagnosed, now when treated she has already gained 40 lbs, and still gaining. Shell calls me up in panic saying she can't get into her clothes anymore, even the larger sizes she just got. I'm trying to get her to cut out gluten as well and she totally agrees, but I don't think she's there yet, mentally, lol. She too is addicted to it.

Our mother has gluten allergy so the possibility isn't that far fetched.


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## Sadface

Not sure what's going on, but lately my anxiety seems to be coming back. And my pulse is up, around 80 again, but weak. So it's definitely not like a sledgehammer.
I tried to take a midmorning nap on the couch the other day only to wake up in a sort of panic after just barely falling into a sleep. My pulse was up to 110 bpm.

I feel yucky once again, everything feels like gloom and doome. Could it be because I caught a cold from my daughter last week? Sore throat, a cough that sounds like a 2-pack a day for 40 years smokers cough and a stuffed nose. My sinuses and throat has been hurting so much I had to eat ibuprophen once again. Measured my temp once at 99,1 F when I felt hot.

Or could these going-back-to-hyper symptoms be because my thyroid levels are going back up again, even if ever so slightly? Thus, I'm not hyper, but raising? Can just a shift give symptoms?

I'm also sleeping terrible again at night, waking up every hour on the hour. But, no night sweats (thank god)

I'm doing another thyroid panel again on friday so then I know for sure whats going on in the blood. But, what's going on in the cells?? And what can I do to cope with this anxiety? It feels like it's getting harder and harder to deal with. I'm losing hope in all of this and that's a terrible feeling.

I'll update more after I'm getting the lab results back.


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## creepingdeath

Your symptoms can be from being Hypo.

Anxiety attacks both the hyper and hypo.

I have anxiety sometimes almost continuously.

Being hypo my heart rate is sometimes in the low 50's but when the anxiety kicks in it can go up into the 100's.

I try and not let things bother me which can set it off.

Keep your self busy if you can to try and keep your mind off it.

Go for those brisk walks to relieve the stress.

If it really gets out of hand go to the ER again.

I hope you feel better soon Sadface.

Thyroid disease "SUCKS"


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## Sadface

Thank you Jamie. I'm trying to tell myself that this won't last forever, but it's so hard to deal with when it's happening. And there's no way to shake that aweful feeling. I have a constant knot in my stomach of worry, honestly, I think I will end up totally mental if this doesn't stop. Soon.

Im sure this insomnia doesn't help either. But I refuse taking the Ambien, last time it just made the anxiety so much worse the day after.


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## Sadface

My most recent labs are just in, as followed:

TSH 18,70 H (0,47 - 4,68)

T4 Free 0,39 L (0,78 - 2,19)

T3 Total 0,94 L (0,97 - 1,69)

So they do look better than 3 weeks ago, but still not optimal. I don't think I will get meds now either, will most likely be told next week by the MA that I'm progressing nicely and will repeat test in 3 weeks again. My next scheduled appointment with endo is end of October, so pretty far out.

I've been doing weekly shots of B12 three times now. And I also started to use only tablesalt containing iodine since I've been using only natural Celtic sea salt before that without iodine. So I hope that helps. 
And I'm now fairly certain that the anxiety and rapid pulse I've been experiencing is due to this shift in levels.

The Total T3 looks like it's coming close to the referens range now, but I still wish my endo would do a Free T3 as well. But looking over all my thyroid labs in the past it doesn't look like I'm having any conversion issues.

Well, I'm just gonna keep on truck'n and prepare myself for several more months of this hypofase. At least I'm mentally encouraged by this raise in levels.


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## jenny v

Girl, you are flat out hypo now! Can you remind of us of what thyroid meds you're on right now?


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## Sadface

Jenny, I'm not on any thyroid medicine, never been. I think my endo is waiting for my thyroid to heal itself after this nasty bout of inflammation that started in April. That's how subacute thyroiditis usually behaves, but about 15 or even 20% of sufferers become permanently hypo due to destruction and scarring of the gland.

My levels have gone up in the past 3 weeks, on its own, so maybe that's a sign my thyroid is repairing itself. I guess I'll have to wait for yet another thyroid panel next month to see if this is a continuing trend. Or not. It's just that I feel ever so crummy and I look like something the cat dragged in too, all swollen and puffy.

I think my endo is afraid that if I do go on replacement meds now my thyroid will go lazy and stop working all together if that's what it's suppose to do. I don't have an appointment with her for so long so I can't ask questions. I know her MA will call me next week about my results (I've signed up at my hospitals website so I can check my own labs as they come in) but she never tells me anything else, just to wait another month and repeat test. 
I might just call next week to ask to be seen earlier. It's hard to get anything done like this and it would be nice with some meds at this point.

I was first hyper, then my levels started to drop beginning of July. My TSH was then still at 0,02, my Total T3 was slightly over the referens range but my FT4 was borderline low. After that it's been a total drop.

What I'm scared of is that my thyroid is doing it's best right now but there's still enough damage and scarring it will never function optimal again. And I will need meds when it's evident. And that I will have to live like this until there's no more doubt (for how long?) it's sluggish/damaged.

I've read that the more severe the inflammation was during the acute fase, the higher the chances are of permanent damage and thus also permanent hypothyroidism.

I wish I had a crystal ball to see how this will end. I'm so tired of being tired.


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## jenny v

How long do they want you to wait before they decide it's damaged or not and you might go on meds?


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## Sadface

I have no idea. In the beginning of all this I was told I will get meds if my levels go too low.

When I read about this online there's different info. One says the hypofase lasts 6-8 weeks and it's usually mild. Another says this can last for years. 
And some says patients will be put on meds as soon as they're dipping too low, especially if they're symptomatic, stay on them for one year, then go off to see how the thyroid reacts.

I'm thinking there won't be any meds at least until end of October, when I'll see my endo again, no matter of how low I am. But then I'm wondering why the monitoring of my levels every six weeks if it doesn't matter anyhow.

I also would like to do a repeat US just to see how my thyroid looks like now. If the earlier found nodules were just inflammation.


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## Sadface

A little update; got a call from my endos MA, was told I'm still low. And will repete thyroid panel in 4 weeks. She said I will probably get help (meds) if my next results are still low. Always something  So, on to this next 4 weeks count down.


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## Sadface

Yet another (positive) update; So, this morning I called my endos office and left a sort of a pleading message. That please, I need help. A few hours later I got a text message from Walgreens saying my medication is ready for pick up!!! Say whaaat???

Yes, my endo prescribed me levothyroxine 0,088 mg!!! I'm so exited!! The pharmacist told me to wait until tomorrow morning before I take my first dose, so I will. Even though my first instinct is to just eat the whole bottle at once right now (no, I won't...  )

I know there can be tons of obstacles still along the way, but for some reason this made me so friggn happy I almost feel like doing jumping jacks. But nah...Not yet...

So, for my next blood test, should I have it done the first thing in the morning, before taking the meds? So the tests aren't obscured by the meds? Right?

And if I feel I'm going hyper instead, with that aweful hard heartbeat, should I just quit the meds at once, use my leftover Atenolol and call the endo?

Sorry for this long story I'm writing here with all the questions, but yes, I'm just so happy.


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## creepingdeath

Well good for you~

I hope the med's help you feel better.

A lot of things can happen when taking levo. "trust me, I know"...

If you start not feeling well call your Doctor before doing anything.

Jamie~


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## Sadface

Jamie, thank you!! I just took my very first pill this morning.

Did you, or do you, have any bad side effects from Levo? What were they? 
I called my endo and left another message yesterday asking what to do if I get bad symptoms. I just talked to my sister, she told me that some people do best if they spilt their pill up in one dose in the am, the other one in the pm.

My insomnia is getting out of hand so I'm sort of afraid a night time dose will make it even worse. 
I'm acctually wondering if I have sleep apnea. I wake up at night, a lot, from my own loud snoring. And my tounge feels "too big" for my mouth and it has jagged edges from my teeth. I hope all of that will just go away, soon.


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## creepingdeath

Sadface said:


> Jamie, thank you!! I just took my very first pill this morning.
> 
> Did you, or do you, have any bad side effects from Levo? What were they?
> I called my endo and left another message yesterday asking what to do if I get bad symptoms. I just talked to my sister, she told me that some people do best if they spilt their pill up in one dose in the am, the other one in the pm.
> 
> My insomnia is getting out of hand so I'm sort of afraid a night time dose will make it even worse.
> I'm acctually wondering if I have sleep apnea. I wake up at night, a lot, from my own loud snoring. And my tounge feels "too big" for my mouth and it has jagged edges from my teeth. I hope all of that will just go away, soon.


Oh yea I had side effects.

In January 2013 when I first started taking synthetic levo they started me out on 88mcg.

Within two weeks I started getting a stiff neck and more muscle pain.

After two months I had blood work and was bumped up to 100mcg.

After two weeks I started getting dizzy and short of breath just sitting still.

I waited a few weeks and tried to call my Doctor but the whole clinic was closed for some reason.

I talked to the resident on call in the ER and he said to come to the hospital.

I went and they said I was either dehydrated, hungry or it was my thyroid and to see my Doctor.

My TSH was 33 or something like that because I stopped taking the med's cause I knew that was what was causing it.

I think I was just blown off because of not having insurance back then.

When I finally saw my PCP he said he didn't think it was the levo but I know it was.

He just put me on name brand and bumped me up to 125mcg which made no difference and in some ways made things worse.

I eventually ask my PCP about Natural thyroid med's and he acted like I was talking about the Devil or asking for heroin.

I finally got on Medicaid and saw an Endo who said he thinks I was started off on to high of a dose.

But I still think the problem I still have is because of synthetics.

I am currently on 75mcg which I started 4 months ago taking 1/2 pill a day for 2 weeks then the whole pill daily.

I today still do not feel well at all and hope at my appointment at the end of this month I can talk this Endo into trying natural med's.

I do know from all the research I have done that many people can not handle synthetic thyroid medication and I am almost positive I am one of them.

Sadface ,

I had all the symptoms you are describing and more before taking levo.

Insomnia, falling asleep for maybe 1/2 hour then waking up off and on throughout the night.

Mega Anxiety..............................

Feeling like maybe having sleep apnea too.

The tongue thing is hypothyroid.

Swollen with scalloped edges from indentations from your teeth.

Hopefully you will tolerate the meds better than I do.

Levo takes at least a couple of weeks to take affect.

All I can say is if your symptoms get worse after taking it contact your Doctors.

GOOD LUCK.

Jamie~


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## jenny v

I am not sure splitting up the doses of levo is necessary, it's all T4 which has a long half life, it doesn't have any T3 (which has a shorter half life and packs an immediate punch, hence the dose splitting). I think you're fine to just take it in the morning.



> And my tounge feels "too big" for my mouth and it has jagged edges from my teeth.


This stuck out to me--this is a classic hypo symptom. I forget what it's called, but a lot of people who are hypo have "scalloped" edges on their tongues from swelling and the tongue pushing on their teeth. I get it all the time when I'm hypo. Make sure you're drinking lots of water, that definitely helps.


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## Sadface

Jamie, that sounds tough! I hope I'm not starting on a too high dose now, would HATE to get those heartbeats again, yuck! 
I hope I also convert these synthetic hormones into T3 without any problems. 
My next blood test won't include Free T3 (again) only Total T3, so how would I know? Just go after the symptoms? 
If these sleep problems don't go away now I might go to my PCP and ask to do a sleep study. They're making a commercial on the radio station right now, that my doctors clinic is involved with, about sleep problems and sleep studies to get help. So that shouldn't be a problem (I hope)

Jenny, thank you for explaining about splitting the dose. It makes total sense that it's not necessary with the T4, only the "fast acting" T3. 
Yes, i find myself all the time pushing out my jaw due to my tounge wants to stick out between my teeth. I guess I look rediculus doing so, lol. I hope these swellings will be one of the first things to go. The under eye bags, round face and big tounge. I'm gonna take photos today of my face so I can look back when I'm well (keeping my fingers crossed) and remember.


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## creepingdeath

I am sure your problem with sleeping is all anxiety related.

With sleep apnea you jump awake gasping for air and your heart will be racing.

This is what I was told the symptoms would be when I suggested to the Doctor that maybe I have sleep apnea.

If you do not have these symptoms chances are you do not have sleep apnea and it is all hypothyroid related anxiety.

Jamie~


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## Sadface

Jamie, those are the exact symptoms I do have! I've been waking up just like that for over one year now, so even before this whole thyroiditis mess started. 
It's like I wake up in a state of panic, with a racing heart. And sometimes from my own loud snoring. Before I also was dripping of sweat when I was waking up in this terror mode, but not anymore. The sweats stopped when my thyroid levels went down this summer. 
Last year though, I was sweating like crazy, started sometime around early summer. Felt like hot flashes and came on several times every hour. It always started with a very uneasy feeling throughout my whole body, I felt them coming, then I started to feel overheated, like "cooked", lasting a few minutes and leaving me drenched. I was sure it was menopause or something. But then they just stopped, I think it was December, after I started taking 2000 iu of Vit D3 daily. 
It wouldn't surprise me if I was totally depleted of Vit D since I was never outside except for when I had to do grocery shopping or pick up my kids. I've been mostly sitting inside for over one year since beginning of last summer (gaaah, sounds pathetic)

Maybe I should just film myself sleeping tonight. But on the other hand, that seems kind of creepy too. After I saw the movies Paranormal Activity (which scared me half to death) I would worry I would see some weird paranormal stuff going on in my bedroom, lol. Maybe there's a ghost pinching my nose and mouth during my sleep...


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## creepingdeath

Well maybe you do have a sleep problem?

I still wake up a lot myself but never gasping for air or fast heart beat.

Funny you mention video filming yourself.

I actually thought about that myself since I sleep alone.

Thought it was kind of strange also.

There maybe another way.

I was going to get one myself but never did.

An oxymeter that records while you sleep.

It records your oxygen levels and heart rate while you sleep.

If you stop breathing your oxygen levels will drop dramatically and your heart rate will increase till you are startled awake if you have apnea.

It attaches to your wrist like a watch with a clip on your index finger.

I know someone who had sleep studies done.

They had to sleep in the hospital which they had a hard time doing so they were given a recordable device that monitored them while they slept at home.

They were very, very tired all the time and it got to the point that they were blacking out which ended up being that they were falling asleep anywhere and everywhere, even while driving.

It did end up that they did have sleep apnea and now they sleep with this strange mask attached to a hose and some sort of breathing machine.

I would rather wake up a lot than to have to wear something like that.

Jamie~


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## Sadface

Thank you for the tip about the oxymeter. I will check it out.

I've seen those sleeping masks, an elderly neighbour of mine have one of those for her sleep apnea. And yes, they do look rather uncomfortable. And, I'm definitely not in the mood to start dating again, not yet that is. But, if I ever do meet the man of my dreams (again) that mask definitely seem to be kind of...um...off-putting, lol. 
But then again, so is my loud snoring. God, why can't I just be normal, the way I used to be, when everything was so simple...


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## Andros

That is called Macroglossia. You poor dear. What about another doctor? Is it possible for you?


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## Sadface

I hope the levothyroxine will take care of all my symptoms, even though I know it will take a long time. This morning was my 5th day taking it, so far I haven't noticed any effects.

I'm going back to see my endo end of October and right before I'm doing my next thyroid panel to see how the meds look like in my blood.

The endo I'm seeing is really nice but if this whole thyroid thing becomes a battle of getting proper treatment and investigation (as in checking antibodies, ignoring clinical symptoms etc) I will do my best to find another thyroid expert. The problem though is that they're so few and far in between.

Is 88 mcg of levothyroxine a good starting dose?


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## ifthespiritmovesme

My doctor started me on 25 mcg and I noticed a big difference right away. 50 pounds just fell off me in a few weeks. Bumped up to 75 mcg years later, and again, big difference right away. Chronic constipation resolved.
HTH


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## Sadface

Spirit, that sounds awesome with such fast response. I hope I'll be having the same success. Today was day 7 of taking the meds, I might feel a lift in my energy/mood. Yesterday I was out and about, -a lot-. Can't wait until I'm strong enough to start working out. Lord knows I desperately need it.


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## ifthespiritmovesme

I also hope you have the same success! I have problems converting, and Cytomel was added about 4 months ago. The Cytomel has resulted in a major decrease in body pain. It's not easy to get the meds right. I hope you are on the road to relief!!


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## Sadface

Hi everyone! I'm so exited, I went in for my thyroid panel yesterday and just got the results back. And they look great!!

Free T4: 1.31 (0.79-2.19)
Total T3: 1.40 (0.97-1.69)
TSH: 0.10 (0.47-4.68)

I'm feeling way better than when my TSH was 32.5 and my bags under my eyes have reduced in size. I do have more energy as well but not like a few years ago. But that could be because all my muscles have shriveled up next to nothing. I'm trying to get into an exercise regime every day, been walking and even running (slow) but some days I just don't have the motivation. I'm afraid I've gotten used to just sitting on the couch. 
My skin is till dry and I still have this itchy rash on my forearms, feeling like sandpaper. I'm taking 88 mcg Levothyroxine for about 1 1/2 month now. I'm going to see my endo next Wednesday and will ask to switch to dye free Levo.

And I've noticed for a few weeks now I'm losing more hair again. Not alarmingly much, but instead of losing for what seemed like zero strands a day I'm now losing between 50-100 strands/day, which is considered normal I guess. My nails are growing like crazy and are strong (still with ridges). The half moons on the nail beds seems to be getting way bigger and even coming back on my the fingers where they have been missing ever since I noticed it early 2013.

I've started taking about 1/2 teaspoon of pink Himalyan sea salt daily with lots of water and also 30 drops of licorice root to help my adrenal glands. My fingertips have long periods daily where they're not wrinkly/pruned but smooth now, but then also periods when they are. Especially when I'm driving and holding my steering wheel.

I'm just so exited to see these results, I think it will boost my exercise motivation now when I have it in black and white that my hormones seems to be in order. There's just no excuse anymore to not keep moving.

I'm a little scared though my endo will freak out about my low TSH and maybe lower my medication, but will deal with that when/ if it even ever happens. I'm also scared to death she wants me to quit all meds now to see what my thyroid does. I'm not ready for that yet.

Oh, and my sister (back home Europe) had her whole thyroid removed 2 weeks ago and is also doing great. No complications and is 
recovering like a champ. So, things seems to be going great and on the right track right now. I hope that's a trend that will never end.


----------



## Sadface

PS; I just calculated the percentage of the Total T3 and Free T4 and both of them are 43% within their ranges. That's good for the FT4 I guess, but how about the TT3? It might be hard to tell since it would have been better to have the Free T3 instead of total.

The FT3 is optimal in the 75% range, so would it be good for me to up the Levothyroxine perhaps? I guess my FT3 is around that percentage as well? But that would lower my TSH even more, right?

Why is a constant low TSH bad/unhealthy? Will it cause my pituitary gland to shrivel up? And maybe up my cortisol levels? I don't want to come down with Cushings disease on top of it all.

The T3's are fluctuating a lot in a short time, right?

Sorry for rambling, but I always get so filled with questions when I'm getting my results. I will ask all of this to my endo next Wednesday as well.

Oops, my math skills sucks. My TT3 is acctually 59% (good right?) and my FT4 is 37%. 
So, my understanding is that the FT4 can use a tiny bit of improvement and that will make my T3 rise as well.


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## ifthespiritmovesme

Hopefully, it will! You are right about your numbers...


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## Sadface

Just got a text from Walgreens pharmacy that my medicine is ready for pick up. Since I haven't ordered anything I called and asked what it was about. 
My endo have lowered my Levothyroxine dose from 88 mcg to 50 mcg. I guess based on my latest low TSH result of 0,1. Since I'm meeting up with her on Wednesday I will ask what will happen to my thyroid hormones on a lower dose.

My speculations are that my thyroid does function somewhat on its own, that I don't need full replacement. And a lower dose of Levo will bring up the TSH that will tell my thyroid to produce more thyroxine. So, my levels will acctually go up with a lower dose. Well, that's what I'm hoping for at least.

On a positive note, my itchy rash on my forearms will most likely go away switching to the dye free 50 mcg pill. Keeping my fingers crossed. 
Boy do I have tons of questions for her on Wednesday...I better write them all down.


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## Sadface

I'm just gonna continue on my saga, lol...

I saw my endo yesterday. She lowered the dose of Levo to see how my thyroid will behave, the low tsh could be a sign that my own thyroid is getting better. I'm doing another test in 6 weeks and we will adjust accordingly. She's not gonna drop my meds if my tests still come back off or if I don't feel ok.

Next blood test were also gonna check my FSH to see if I'm in menopause or not since I had such aweful hot flashes for 6+ months last year. She also said it could have been my thyroid already then, which I have suspected for a long time. And she will check my b12 and if needed she will prescribe me injections that I can give myself.

I asked her about adrenal fatigue and about my wrinkly fingertips but she didn't think I had AF, then I should also have tan looking skin and dark lines in my palms.

The worst; I have gained weight. Just in the past weeks I went up 5 kilo, that's 10+ lbs!!! Yikes!! And I didn't even noticed it, I guess that's what's called denial? But now that I know I feel like a whale.

I started my new dose last Tuesday morning and today I've been so tired I even napped this morning after dropping off my kids, something I never do. I slept for 1 1/2 hour and woke up red eyed and felt even more tired. Could this be due to lowering the meds? This fast?


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## jenny v

I have adrenal fatigue and I've never heard of tan skin and dark lines being a symptom. A common symptom is vertical lines in the skin on the fingertips. My fingers always look slightly prune-y, like I've been in the bath too long.


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## creepingdeath

jenny v said:


> I have adrenal fatigue and I've never heard of tan skin and dark lines being a symptom. A common symptom is vertical lines in the skin on the fingertips. My fingers always look slightly prune-y, like I've been in the bath too long.


Full blown Addison's disease darkens the skin.

Secondary adrenal insufficiency will not darken the skin.

I was told I might have this also and was tested because I have almost no Tan left on my skin to darken.

Tested negative anyway.........


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## Sadface

Jenny; that's what I've read too, that these fingertips can be because of AF. But she had never heard of it.

Do you know of anything natural that I can take to help my adrenal glands? I saw adrenal support drops and supplements at Sprouts Market, but only bought licorice root drops. I take about 30 drops/day and also 1/2 teaspoon Himalyan sea salt together with lots of water.


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## Sadface

creepingdeath said:


> Full blown Addison's disease darkens the skin.
> Secondary adrenal insufficiency will not darken the skin.
> I was told I might have this also and was tested because I have almost no Tan left on my skin to darken.
> Tested negative anyway.........


That's what seems to be so tricky, to diagnose it. How did you test it? I've read that a 24 hr saliva test is the best way because blood test don't really show unless you have Addison's. 
But some doctors don't really "believe in" secondary AF. That's probably why my endo didn't think I have it because I'm not tan.


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## creepingdeath

Sadface said:


> How did you test it?


Cortisol blood tests morning noon and at night.

My Sister is a Medical assistant and is licensed to draw blood.

So I had her do it at home.

I didn't have to stay at the Hospital lab all day or ride back and forth all day.

She also works at the same hospital complex so she dropped the samples off the next day.

Also an ACTH blood test. This had to be done at the Hospital Lab.

The sample has to be frozen right away. It has something to do with your Pituitary gland function..


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## Sadface

Thank you for explaining that.  Anyways, how are you doing these days? I hope you're feeling better?


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## creepingdeath

Sadface said:


> Thank you for explaining that.  Anyways, how are you doing these days? I hope you're feeling better?


Not all that great.

Still feel like crap.

All the tests, x-rays and blood work they have done come up negative for anything else but thyroid issues.

All the Doctors still think most of my symptoms are not my thyroid.

I had an appointment today with the Endo.

Says he thinks it's either rheumatoid or neurological and wants me to see both types of Doctors.

I still insist to him I think it has to do with synthetic med's but he says no. That the thyroid med's are exacerbating another problem I have.

I'm becoming so confused I'm not sure what to think.

I was just increased to 88mcg of Levo and to have labs 6 weeks from now.

The worst is, Medicaid coverage ended the end of September and the department of welfare did not send me an evaluation form to see if I still qualify for benefits.

I had to call and then send a disability assessment and a life sustaining medication form to them.

I am supposed to here from my case worker by Tuesday.

I see no reason why I won't still qualify.

I can't work, have no money or any assets.

I'm glad this Catholic hospital clinic is a charitable one.

If you do not have insurance it only costs $20.00.

But there is no way I can afford anymore test studies or see any specialists without some kind of coverage.

Basically if they turn me down, I will probably eventually die.

And the way I feel, probably sooner than later.

It's hard enough being sick all the time , I shouldn't have to worry about all this Medicaid Shit...........

"I'm at least glad to here you are doing a little better Sadface'.

Jamie~


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## Sadface

I'm sorry to hear your still struggling! And I hope you still qualify for Medicaid. But it sure sounds like you do. Hopefully you will find out next Tuesday, I know how aweful it is to have to worry about that on top of everything else.

I know it's easier said than done, but hang in there! Don't ever give up.

So this endo is not willing to even try a different medication/Armour? I don't think my endo ever would prescribe Armour either. But, I do seem to do well on the synthetic so far, if I'm on the right dose that is. Yesterday and today I've been so tired again, even napped on the couch and I'm afraid it's the lower dose levothyroxine that's causing this.

No one should have to be so sick for so long time, you deserve much better. And I hope you'll get there soon.


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## creepingdeath

Sadface said:


> I'm sorry to hear your still struggling! And I hope you still qualify for Medicaid. But it sure sounds like you do. Hopefully you will find out next Tuesday, I know how aweful it is to have to worry about that on top of everything else.
> 
> I know it's easier said than done, but hang in there! Don't ever give up.
> 
> So this endo is not willing to even try a different medication/Armour? I don't think my endo ever would prescribe Armour either. But, I do seem to do well on the synthetic so far, if I'm on the right dose that is. Yesterday and today I've been so tired again, even napped on the couch and I'm afraid it's the lower dose levothyroxine that's causing this.
> 
> No one should have to be so sick for so long time, you deserve much better. And I hope you'll get there soon.


The Endo said he personally does not use the old fashion med's anymore.

*The Resident Student Doctor actually laughed at me when I said the type made from pig thyroid.*

*Boy the big cheese Endo did not like that at all and he yelled at her.*

*"Said it was unprofessional and was no laughing matter. She then apologiesed to me"*

He just offered to change brands but I told him it didn't make a difference, that I tried them all.

He is supposed to be the best Endo in the county and he insists it is not the med's.

That something else is going on with me.

Maybe he is right??????

When and if I get back on Medicaid, I'll be having another blood test for another autoimmune disease.

"Myasthenia gravis"

jamie~


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## Sadface

It might sound funny with pig thyroid, but the evidence is in the pudding. So many sick people have gotten their life back using it. I wonder if that resident student laughs at "moldy medicine" too, the penicillin, because it sounds just as weird/funny...

I read a little about Myasthenia Gravis, sounds anything but a walk in the park. While I hope you'll get a diagnosis for your symptoms and proper treatment I hope you don't have to add one more autoimmune disease to the list. But it's good that this endo is willing to look further. 
I think you might be right on about it's your synthetic medicine that's not right for your body. I've been reading and reading about this thyroid so much now and there are so many people that just don't do well on the meds. 
I wish they would just let you try some Armour. It seems like it's some sort of tabu for some doctors.

I will be looking for you on here, I want to see you tell us that you have your Medicaid back. Until then I will worry for you.


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## Sadface

I didn't do well on the lowered dose. I got so tired and my under eye bags came back, the whole face turned puffy again. Most of all I just wanted to do absolutely nothing. So I called my endos office yesterday and left a message that I would like to raise the dose again. At least to 75 mcg. And in less than one hour she called in a new prescription to my pharmacy for 75 mcg.
I will use the dye free 50 mcg pills, split one in half.

So this morning was my first day on a higher dose again. I hope I will bounce back fast. But since my actual thyroid hormones weren't too high on the 88 mcg I'm afraid they will go even lower on 75 mcg. 
Is it really that bad to have a low TSH of 0,1 when taking levothyroxine? What can really happen? I thought the most important part was getting the thyroid hormones in the optimal levels so the clinical symptoms goes away.

I know they think a low TSH can lead to osteoporosis, but can it also cause the pituitary gland to shrivel up?


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