# 99% sure I have this



## creepingdeath (Apr 6, 2014)

I am new to this forum.

I am a 52 year old male.

For the past two years I have not been feeling very well unable to work for the last year and a half.

Because of the recession I worked for myself getting whatever work I could in the construction field.

I could not afford health insurance or even to pay out of pocket to see a Doctor.

I slowly got more and more very severe almost debilitating symptoms.

Some common to thyroid disease and some very unusual.

I have lost everything because of this.

I had to move in with my elderly Father who is letting me stay for nothing.

I have for the last year been going to a free clinic which diagnosed me with hypothyroidism and goiter.

It took me along time but I eventually got on Medicaid and am now seeing an Endo clinic.

The Endo doctor said my thyroid is 6 to 8 times the size it should be.

When I first went to the regular clinic a year ago I ask if my thyroid problem could be autoimmune related because I have Vitiligo which I have had most of my life. I was pretty much ignored and given TSH and TSI antibody test which I learned is usually for hyperthyroidism.

When I told the Endo Doctor he said I needed more antibody tests.

Also had an ultrasound done last week.

Waiting for Medicaid to approve CT scan of neck also.

He also took me off thyroid medication stating I could be taking too much because regular clinic only tested TSH.

Just got a copy of blood tests Friday.

Do you think these blood work results point towards Hashimoto's???

Been off synthroid for 7 weeks.

Waiting for Endo to call.............

I feel like creeping death........

TSH 28.63 reference 0.40 - 4.50 mIU/L

T4, free 1.0 0.8 - 1.8 ng/dL

T3, total 121 76 - 181 ng/dL

Thyroglobulin antibodies 2985 "very high" <20 IU/mL

Thyroid peroxidase antibodies >1000 "very high" <35 IU/mL

TSI 95 <140 % baseline


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## Andros (Aug 26, 2009)

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)

TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html
(Copy and paste into your browser)

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html
(Copy and paste into your browser)

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf
(Copy and paste into your browser)

Lord have mercy! You "do" need a scan of that thyroid because of the high antibodies and yes; because of the antibodies and the vitiglio, you have autoimmune.

You need to be checked for Lupus also as the vitiglio is more likely in Lupus. Anti-dsDNA is the test for that.

Creeping Death is an apt description; that is for darn sure.

Some info above!

Welcome and so glad you are a member. You will find much valuable information here and I am sorry your life has been so destroyed. Don't give up hope; many of us have been where you are right now and are doing just fine now.


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## bigfoot (May 13, 2011)

Welcome! :anim_32:

Looking at those numbers, it's no wonder you feel awful. Very sorry to hear about the ongoing rough time, and I can totally relate to the job situation, too. Just try to remember that things *will* get better. Glad to hear you finally have an endo who is looking into this stuff in detail.

While TSH isn't the best diagnostic and monitoring test out there (though lots of docs swear by it), having a TSH of 28.63 and the various antibodies through the roof sure point hugely towards thyroid and autoimmune. Glad they ran Free T3 and Free T4 as well. Sometimes they skip these, and they are just as important, too -- that way you get the whole picture. As an example, my TSH was nearly 7.0 and I could hardly crawl down the hallway or make a sandwich. I had a relative with a TSH of something like 12 or 13 and they could not even function.

Hope the endo gets back to you soon, and if not, don't be afraid to call and ask. Also, be persistent and advocate for yourself, if you aren't doing that already. It's a good idea to ask for & keep copies of all labs, test reports, ultrasound findings, etc. While I haven't had the surgery myself, I think with numbers like that, a huge goiter, and the many signs & symptoms (not to mention quality of life) I would look into a TT or ablation. At least that way you will be rendered permanently hypothyroid, reduce the antibody attacks, and be much more stable. That being said, we are all individual cases and you still have tests pending. Do beware if any docs want to wait on your thyroid and "let it burn out". That can take a long time (decades), if it ever does finally happen. You deserve quick and effective treatment ASAP.

Let us know how things go and please keep us updated. Sending positive thoughts your way!


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## creepingdeath (Apr 6, 2014)

Thanks for the warm welcome and for answering my post.

When I joined this forum I thought about a user name.

I thought about how I actually feel.

"LIKE I AM SLOWLY DYING"

That is how I came up with creeping death.

I myself do not know how I am still walking around.

I guess shear will.

I have for the past 30 years worked very physical jobs and I am used to body pain.

But this is just a non stop feeling as if my body is trying to fight off an infection or poison.

The worst symptom I have is a labored breathing issue.

I did not have it before starting synthroid. This is one of the reasons I stopped taking it.

The other is the medication did nothing to alleviate any of my symptoms even after taking it for a year it just made them worse.

Although the breathing is a lot better it is still there after 2 months with no med's.

I had chest x-rays "normal" : pulmonary lung function test "above average".

It is not like I'm not getting enough oxygen. It feels as if my lungs are swollen and do not move right.

I also feel as if I am almost always on the verge of passing out. spots before my eyes : ringing in the ears.

I haven't driven a vehicle in almost a year. I am too afraid to.

These are only some of the worst symptoms. A lot affect my mood and emotions which we all know can be more severe than the physical ones.

I have so many I haven't even told the Doctors about all of them in fear they will think I am crazy.

I am hoping this is all just my thyroid and if It is and I get the option to have it removed trust me it is coming out....

I am a 52 year old single man who never had kids.

I was very lucky to get Medicaid and I am not to sure how long the state will let me stay on it.

Thanks again for your response and I will try to keep you updated.


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## bigfoot (May 13, 2011)

Willpower can be amazing stuff. Half the battle is being taken seriously by the docs -- it can be a relief when they finally look into things and stop ignoring you.

Yep, I think the 800 lb. gorilla in the room is the thyroid. Between that and the autoimmune component, it can really do a number on you. Some of the things you mentioned as signs & symptoms sound very, very familiar. Docs won't always agree on what can be "caused" by the thyroid, but ultimately, it doesn't matter as long as you get proper treatment and monitoring. You may be really surprised at what magically resolves itself. For example, I had weird itchy rashes on my arms. Nobody could figure it out, but when I began T4 meds, it spontaneously cleared up literally overnight.

Since you're seeing an endo, be sure they check other hormones besides thyroid. A lot of this stuff will run together, and some things can mimic other things. When one area is deficient, others can be, too:

* Adrenals / Cortisol / DHEA - Either a 24-hr saliva test or 24-hr urine collection, broken into different time periods.

* Vitamin and Mineral Levels - Vit. D, B-12, Ferritin, etc.

* Sex Hormones - Total Testosterone, Free Testosterone, SHBG, Estradiol (E2).


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## creepingdeath (Apr 6, 2014)

Since I am sure I have two autoimmune diseases I am going to ask to be tested for more.

My symptoms are so severe and some are very strange that I do not believe they are all thyroid related.

I am also going to ask to be tested for Lyme disease.

Before I first started getting symptoms I was spending a lot of time in the woods hiking , fishing and hunting.

I do remember brushing ticks off myself. Also waking up the next morning and having many of them on my bed sheets.

I never found any attached or had a rash.

I told the clinic doctor about this when I first went to the clinic a year ago and was given a lecture about wearing long pants and long sleeves when going into the woods and no suggestion about getting tested ever came up again.

I have practically no tan left on my body because of 40 years of Vitiligo and always wear that type of clothing to keep the sun off my skin.

When I find the energy I will try and make a list of some of these strange symptoms which most seem to be nerve damage related.

Thanks for replying.


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## bigfoot (May 13, 2011)

Yes -- Lyme disease and stuff like Mono/EBV can be silent problems, too. Thanks for reminding me -- I knew I was forgetting to mention something yesterday!

From what I've read and been told, just because you don't remember a bite or a rash is not a definitive enough answer to say whether you were really bitten or not. Lots of folks have Lyme disease that don't recall being bit. I used to have the little creeps on me when doing field work in the brush and tall weeds. I can't imagine having them in the bed! Also, beware that while a standard Lyme test is fine & good, it only checks for one (or a few) strains of the disease. There are other more detailed blood tests out there that can look at a wider scope, in case something might have been missed. If you have an infectious disease doc in your area, they can be a good resource for looking deeper into this stuff.

Good idea on getting tested for other autoimmune issues -- where there's one, there's usually more. (For example, I was trying to blame everything on my thyroid, then discovered I had autoimmune hepatitis, too. Whoops.)

Would be interested to see your list of signs & symptoms when you get a chance, but no rush. First and foremost is going slow and taking care of yourself.


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## creepingdeath (Apr 6, 2014)

These are most of the symptoms I have some common to thyroid disease and some not.

1. Extreme hair loss on legs.
2. Severe muscle pain
3. Severe joint pain
4. Sensitive to cold especially my legs.
5 . Become more cold after eating.
6. Intermittent pulsating numbness " like your heartbeat" on finger tips; arms; legs and feet.

"creepy crawly feeling"
7. Intense feeling as if ice cold water is being flicked on your body, mostly legs.
8. Stomach discomfort after eating ; bloating.

Had gallbladder, liver ultrasound (normal).
9. Extreme vertical ridges and beading on fingernails so bad they look deformed.
10. Red rash on neck and chest near thyroid . It is always there, been there for years. 
11. Very bad bags under eyes.
12. Eyes always red like I have allergies .
13. A couple of my toe nails just completely fell off but grew back only to fall off again and again.
14.Sometimes I get itchy all over. I will scratch so bad I bleed.
15. Very few eye lashes left. Eyebrows thinning too.
16. Shortness of breath I guess you call it air hunger also feels like I have a chest infection but have no cough and no coughing anything up.
17. Non stop side of rib pain or discomfort . "feels like lung pain"
18. Middle of back pain near spine.
19. Sore stiff back of neck. "neck crunches and cracks"
20. Strange dizzy lightheadedness ; feel like passing out.
21. Very spaced out feeling "feels almost like someone slipped me LSD.
22. Ringing in the ears.
23 Very large goiter
24 I swear when it is quiet at night my thyroid makes noises.
25 Double vision.
26. Blurry vision from many, many eye floaters.
27. Sometimes when trying to focus on something my eyes feel like they are shaking back and forth very fast.
28.I see flashing lights and constantly have static in vision "visual snow".
29. I see things out of the corner of my eyes that are not there.
30. I have a very heightened sense of smell and hearing.
31. I will sometimes touch one part of my body and feel numbness in another parts.
32. Food does not taste good which effects my appetite.

33. Some days my armpits sweat so bad I have to change shirts many times.

34. Newest symptom which I have had for 4 or 5 months now is very painful feet.

The pain is there all the time but very, very bad just before trying to fall asleep.

"It feels as if every bone in my feet are broken?

35. Depression and anxiety are because I have been so sick for so long.

"May also be part of the disease.

36. never ending exhaution but sometimes find myself pacing the floors back and forth.

37. Pounding heart beat. "so bad sometimes the bed moves with every beat."

I am sure I have more symptoms but these are the ones that come to mind right now.


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## bigfoot (May 13, 2011)

Thanks for posting that -- have the docs commented on any of this stuff? Or have they pretty much ignored these things? Rashes, hair loss, nail problems, vision issues, red eyes, goiter, etc. These are all physical signs (vs symptoms) that can be seen and quantified. I do see quite a few things on that list (actually, many) there that could be attributed first to thyroid, and secondly to autoimmune issues. The ringing in the ears could be Meniere's Disease, and that can be checked for. It could also account for the dizziness or off-balance feeling (heck, maybe even the light-headed sensation). There is also a simple in-office test docs can do to check for vertigo / BPPV that involves bending your head and body, while watching your eyes for any nystagmus (involuntary eye movement).

Nails cracking easily or becoming brittle is a typical thyroid sign, as is losing hair. Obviously the goiter is one, too. Being cold all the time usually points towards hypothyroidism, but since your thyroid is wonky and probably swinging all over, that could explain feeling hot and sweating frequently, too. Usually that sensation is found with hyperthyroidism. The blurry vision, double vision, and floaters could be from many things, but I know folks with Graves' Disease / hyperthyroidism can get eye problems, especially eye pressure. Diabetes can also cause neuropathy, eye problems, nerve pain, amongst other things. Not saying that is part of what's going on, but has anyone checked you for an A1C? Might be a good idea if they haven't already. The anxiety / depression / mood issues can also be caused by many things. Certainly being sick for a long time can test anyone's spirits, and we have all been there. Since things like depression don't cause rashes, eye problems, and goiters -- it's very likely that what you are dealing with is a side-effect or symptom of your illness(es).

Personally, my $0.02, I'd also try to see an eye doctor sooner rather than later. The many vision problems you mentioned should most certainly be checked out by a specialist. Also, a neurologist consult would probably be worth your while. Perhaps the doc you are seeing can give you some referrals. And I hope the endo gets back to you with a game plan soon, too. My humble opinion is that your thyroid is still a big player here, and should be addressed. Waiting and watching does not really seem like a viable option, and I'd stress the quality of life problems you are having daily. Sometimes that helps communicate the message to the docs.

Something to consider while you are dealing with all of this is disability. I'm not sure what you are qualified for, as each person is different, but it might be worth checking into. From personal experience, I'd recommend not going it alone, and finding a good lawyer to represent you. The processing times for SSDI claims are downright ridiculous, and the sooner you can start the process, the better.


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## bigfoot (May 13, 2011)

Oh, and Andros is very wise.  So many of us here have been through these things, and while it can be very hard some days to keep pushing forward for answers, they are out there. Just wanted to give you another high-five. hugs3


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## creepingdeath (Apr 6, 2014)

You have to remember I am on Medicaid.

You just can't pick and choose which Doctors you can see.

A lot of Doctors do not even except people on Medicaid. "It's all about making money to them"

A lot of tests need to be approved also.

And as for disability:

Most of the jobs I had in my life were either under the table or I was an independent contractor.

I do not have that much money put towards social security.

If I did apply it would be for SSI.

I do not think thyroid disease is considered a disability?

Because of being single with no children the only way I got on Medicaid is with a form from the Doctor stating I am temporarily disabled for less than 12 months.

The Medicaid coverage ends Sept. 1st of this year.

The State will revue my case and see if I can still receive benefits at that time.

They just gave me medical coverage also "no cash assistants".

I sure hope they keep giving me the benefits.

I don't think I'll be 100% cured by then.

It seems as if this is all thyroid related it takes a very long time to treat.

Plus all these appointments and tests take so much time.

My next appointment at this clinic is almost 2 months away.

I just want to get better so I can work.

My life since getting sick and unable to work has become very boring.

I did call the clinic yesterday and stated I have heard nothing from the Endo Dr.

They said he will call me tomorrow and let me know what is going on.

I am very optimistic that He will even call.

Before I got sick I had not seen a Dr. in probably close to 30 years.

Things have sure changed.

Everything is real fast. Rush you in and rush you out.

No tests are done in the office and have to be made somewhere else by appointment.

Seems more like they want to make a profit instead of making people better.

Also I do not like Doctors , hospitals. "It all gives me the creeps"


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## bigfoot (May 13, 2011)

Ahh yes, good ol' Medicaid. Hopefully they approve the tests and docs that you need in short order. You're absolutely right -- the system definitely needs to be fixed, and is geared towards profits. Sadly, all the recent legislation doesn't do much about this, other than shift the money around. But I digress...

I don't think thyroid disease is very well understood at the SSA (and many other places). At the same time, as far as disability goes, it's less about the actual diagnosis, and more of showing your reduced work abilities.


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## surge (Aug 15, 2012)

Sorry to hear about your struggle, and I like everyone else almost did a doubletake when I saw your numbers. They're bad. That's for sure. A lot of your symptoms are probably related to thyroid issues. Big swings in my levels do really mess up my nails, hair, etc. But particular nail deformities can be helpful in narrowing down potential issues, so I'd be sure to point them out to any doctor treating you, in the hopes that someone recognizes the defects and can speak to if they're just thyroid or maybe something else.

Here's my question: are you on any medication now? You mentioned that the doctor pulled your synthroid but clearly you need to be on it. Getting you headed back to normal (b/c your numbers are very low. Very I-would-have-trouble-getting-out-of-bed low) and might clear up a lot though if these are long term, that points to the meds not working for you...for a variety of reasons...too low a dose, not absorbing well, etc.

I am concerned that a few of the symptoms you mention indicate other families of AI disorders. The spine, feet and interstitial rib pain can be indicators of a family of AI arthritis. The neck, too, maybe. Do you notice if the pain in the spine is worse in the morning or evening? And are your feet or hands swollen at all?

It's really hard to be in the middle of the cloud of symptoms and answers. I'm glad you at least have the confirmation that you are having pretty major thyroid trouble. You also know that if you have two AI issues now, you are likely to have more. I don't know a ton about all this outside my experience but if I'm going to add a test to your pile of tests we're requesting for you, I'd nominate the ANA. If your thyroid antibodies are so high, and considering some of your other symptoms, I can't help but think what's going on with you is bigger than just the thyroid.


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## creepingdeath (Apr 6, 2014)

surge said:


> Here's my question: are you on any medication now? You mentioned that the doctor pulled your synthroid but clearly you need to be on it. Getting you headed back to normal (b/c your numbers are very low. Very I-would-have-trouble-getting-out-of-bed low)
> 
> I am concerned that a few of the symptoms you mention indicate other families of AI disorders. The spine, feet and interstitial rib pain can be indicators of a family of AI arthritis. The neck, too, maybe. Do you notice if the pain in the spine is worse in the morning or evening? And are your feet or hands swollen at all?


Thanks for replying SURGE.

To answer your questions:

No I am still without medication. It has been at least 10 weeks maybe even 12.

My TSH is high but other than the antibodies being very high, T4 and T3 are within normal range.

I did hear from the Endo clinic this last Friday.

I did not speak to the Dr. directly but one of his receptionists.

The Dr. got my blood work and ultra sound results.

I was told I was given approval to have the CT scan of my neck from the State insurance.

I was told to have it ASAP.

So the soonest I could get it done was this last Monday.

Something is "up" though~ because when I went to the hospital for the test I was taken before everyone else and did not have to wait like I usual do.

I am still waiting to hear from the Endo Dr. for the next step in this whole nightmare experience.

I have a suspicion that I have had a thyroid problem for many , many years and really never new it.

Over the years my body has become accustomed to the symptoms till now. "And all hell has broken loose" with all these symptoms.

Like I said , I'm a pretty tough guy . So I guess this is why I am not bed ridden with numbers this low.

Trust me it isn't easy and I am sure not having a good time.

The middle back pain is almost always there. But was much worse when I took the Synthroid.

My feet and hands are never swollen.

I could very well have other Auto immune problems but I would find it very strange that all of them would raise there ugly heads at one time.

I have done a lot of research over the last couple of years about thyroid disease and have read stories about people having way higher TSH numbers than me "in the hundreds" and have had no symptoms at all and then a lot stories of people in so called range and have symptoms even more severe than me.

So I guess everyone is different.

The only thing I can do is take it one day at a time and hope for the best.


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## bigfoot (May 13, 2011)

creepingdeath said:


> I was told I was given approval to have the CT scan of my neck from the State insurance.
> 
> I was told to have it ASAP.
> 
> ...


While I don't wish you any additional issues to deal with, it may well be a blessing in disguise. You have gotten the attention of the doctors and now likely will have some data to back up your claims. This means they should start taking you seriously and work towards improving your health sooner, rather than later. And like you said, a TSH by itself is not really indicative of how bad or good someone's thyroid situation is. Those ultrasound and CT scan results should be telling when they show up. And I share your hunch that you have probably had a thyroid problem running in the background for a long, looong time.

hugs6


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## CA-Lynn (Apr 29, 2010)

Agree with Bigfoot. I think now the balls will start rolling to zero in on all the issues and tie them to firm diagnoses.

Many of us have had multiple autoimmune diseases diagnosed [with no firm evidence that one is related to another] in the same time frame. I myself have about 6 of them. But I'm here to tell you that 20+ years later, life is really good. Yes, I'm getting older and have age-related diseases [not autoimmune] on top of the other diseases, but I'm happier now than I've been in decades. Meds are working and modern science keeps coming up with new and better options.

So hold onto that. It WILL get better.


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## creepingdeath (Apr 6, 2014)

Went to the Endo clinic again today.

I am now 100% sure Hashimoto's is what I have.

The Doctor confirmed it.

In these last two months with no Thyroid med's this goiter has grown probably 10 times the size it should be.

The Endo started me on a low dose of Levothyroxine. 75 mcg.

No biopsy needed as far as he is concerned. No nodules on thyroid.

But because of these very debilitating symptom I'm having I had blood work done for other auto immune diseases, Lyme disease also.

Was also suggested I see a pulmonary Doctor for the breathing issues.

Although I had a pulmonary lung function test with above normal results I did smoke for 35 years but quit 2 years ago.

Ct scan of my neck show what could be a small amount of emphysematous changes in the top part of my lungs.

I still think my breathing problems are all thyroid related, possibly anxiety.

I can walk miles and not be out of breath but sometimes sit in a chair and all of a sudden my breathing becomes labored.


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## CA-Lynn (Apr 29, 2010)

Are you overweight? If so, how much.

I don't doubt that anxiety could exacerbate the breathing issues.

If you smoked for that long, odds are excellent that you have emphysema as well. So I wouldn't chalk off the breathing issues as being thyroid-related and assume they'll go away when the thyroid is under control. You need to see a pulmonologist.


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## creepingdeath (Apr 6, 2014)

No I am not over weight.

I am actually in very good shape for a guy 52 years old except for the thyroid problems.

I am not a very tall guy either 5 foot 4 inches around 130 pounds.

The lung changes were seen years ago on a Ct scan.

I was told everyone who smoked for many years has some form of lung damage.

I just had this full lung function test a few months ago and was told by my PCP that I do not have emphysema.

That you can not have above normal readings and have emphysema.

It is more likely scar tissue on the CT scan .

Also emphysema does not happen overnight.

One day I had no breathing issues and the next I did.

And like I said with above normal results on the lung function test I certainly would not be out of breath sitting still which sometimes I am.

I have actually never been out of breath doing anything physical.


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## Andros (Aug 26, 2009)

It sounds to me like you have myopathy of the muscles supporting the lungs. This is not unusual w/autoimmune thyroid disease most specifically Graves' Disease (hyperthyroid.)

However, myopathy can be due to a myriad of autoimmune diseases. Sad, but true!

Keep us in the loop here!


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## creepingdeath (Apr 6, 2014)

Every other muscle in my body are aching and weak.

I wouldn't see why the muscles that involve breathing wouldn't be also.

The CT scan showed no compression of my trachea from this enormous goiter.

But It sure feels like someone is grabbing me around the throat all the time.

A CT scan is preformed while laying down.

I feel like I can breathe better when laying down.

The goiter may be pressing sometimes when standing or sitting.

I will have to talk to my PCP about this tomorrow as I have an appointment with him.


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## bigfoot (May 13, 2011)

Interesting developments for sure. I think it's important to impart on doctors the quality of life issues, and most certainly the ongoing discomfort you are feeling, along with the breathing trouble. All too often I get the feeling that if a doc sees somebody "walking and talking" they automatically assume things are going well. Sure, we might not be emergent cases, but we still need to function on a daily basis and live our lives. I can't speak for you, but IMHO, if I was in that situation I'd be absolutely pushing for quickly dealing with a goiter that is ten times the size it should be. The breathing issues are just the icing on the cake, and might be enough to push for quick action.


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## CA-Lynn (Apr 29, 2010)

Myopathy can be due to a number of drugs that are not thyroid related, as well. Are you taking statins or other types of drugs for cholesterol?


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## creepingdeath (Apr 6, 2014)

The only medication I take is Levothyroxine 75 mcg which I have been taking for three days.

My arm pits are already starting to sweat.

Also I occasionally use Pepcid for heartburn acid reflux.

My cholesterol is not high.

Went to see my PCP today.

I sure must have got there attention because they want me to have an MRI of my spine for all these myopathy and neuropathy symptoms I am having.

Also I am to see an eye Doctor for double vision, floaters, visual snow and flashing lights.

I was looked at by three Doctors today and all agree my breathing issues are most likely thyroid related.

Not compression but just thyroid levels not being right.

Haven't gotten recent blood work back yet.


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## creepingdeath (Apr 6, 2014)

Well another development.

I just got a call from the Clinic I go to.

Seems the Endo who had me get all the auto immune blood work must have found something.

I was just told he wants me to have another blood test.

A double stranded DNA test (anti-dsDNA).

I only talked to the receptionist who was not too specific why he wants the test.

MY thoughts are I was positive for ANA and the Endo may suspect Systemic lupus erythematosus.

This might be the answer for all the very severe and strange symptoms and the reason I feel like I have one foot in the grave.

I will have the blood work on Monday. I truly do not feel like leaving the house today.


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## bigfoot (May 13, 2011)

While I sure don't wish you any additional problems, hopefully this doc has something in mind. Sure sounds like it. Do keep us updated and hope you feel a little better tomorrow.


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## creepingdeath (Apr 6, 2014)

Well,

Looks like all the blood work I had for other autoimmune diseases are coming back negative.

All the Basic metabolic workup is perfect also.

Looks like all these horrible symptoms are Hashimoto's related.

My breathing issue actually seems to be getting a little bit better "nock on wood"

But joint and muscle pain are still wreaking havoc.

I was also denied the MRI of my spine by Medicaid.

They say it is not medically necessary.

I know there is no damage to my spine.

These Doctors at this Clinic send me to a different specialist for every symptom I have.

When I know my problems are from one big disease and that is Hashimoto's.......................

I sure hope this Endo can get this under control before I lose my mind.............


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## bigfoot (May 13, 2011)

It sure seems like there is a specialist for everything under the sun. On the plus side, those tests came back negative. I think there are a lot of issues, signs, and symptoms that docs are reluctant to chalk up to Hashi's. Oh well, people used to think bloodletting and frontal lobotomies were a good practice, too. Eventually medical science came around.  Crossing my fingers the endocrinologist can get a handle on it -- I really think it's possible, and agree that is likely to blame for a lot of this.

Oh and how is the levothyroxine working out for you -- still taking 75 mcg? Any other improvements noted?


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## creepingdeath (Apr 6, 2014)

Yes I am still taking 75 mcg.

I don't see the Endo till the end of July.

I'm sure I'll need an increase.

My goiter has gotten smaller over the last week also.

I doubt it will get that much smaller.

It did not the last time I was on thyroid replacement.

PS> I was wondering when you were going to put a picture up of Bigfoot.......


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## bigfoot (May 13, 2011)

Yeah, that 75 mcg of T4 is probably not enough.

Took me a few years on the photo, but I finally got around to it. Had a heck of a time getting him to stand still for a photo.


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## CA-Lynn (Apr 29, 2010)

Fly in the ointment.........there's such a thing as "false negative." For example: I've had tests for Rheumatoid Arthritis run about 4 times over the years and they always come back negative. And yet I do have all the physical evidence of RA.

So just because it's negative, doesn't mean it really is.


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## creepingdeath (Apr 6, 2014)

CA-Lynn said:


> Fly in the ointment.........there's such a thing as "false negative." For example: I've had tests for Rheumatoid Arthritis run about 4 times over the years and they always come back negative. And yet I do have all the physical evidence of RA.
> 
> So just because it's negative, doesn't mean it really is.


C-reactive protein and Sed rate- "ESR"

came back negative.

No inflammation.

But it sure feels like I have inflammation.

I haven't heard anything from my PCP but I am sure he will say I have no more autoimmune diseases.

I just wish at least a few of these major symptoms would go away.

The little ones I'm sure I could learn to live with.


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## shafree (May 8, 2014)

CRP and ESR won't be elevated in everyone with inflammation. People present differently. It's one of the reasons I don't envy rheumatologists their jobs!

Autoimmune diseases can be very tricky to diagnose and because so many of them share overlapping symptoms it is sometimes years before doctors get to the bottom of it.

You seem to be a good candidate for having more going on than just Hashimoto's, but I hope for your sake that it really is just Hashimoto's!


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## creepingdeath (Apr 6, 2014)

shafree said:


> CRP and ESR won't be elevated in everyone with inflammation. People present differently. It's one of the reasons I don't envy rheumatologists their jobs!
> 
> Autoimmune diseases can be very tricky to diagnose and because so many of them share overlapping symptoms it is sometimes years before doctors get to the bottom of it.
> 
> You seem to be a good candidate for having more going on than just Hashimoto's, but I hope for your sake that it really is just Hashimoto's!


I truly hope so too.

I don't have years to get an answer or solution to this problem.

I sure wish taking this little magical thyroid pill once a day would solve all these problems.

Looks all good and promising in the medical books but in reality most often it does not work the way it's written .

This disease is really bazar and mind boggling.

Why so often doesn't the treatment work the way it is supposed to?

It's the year 2014. shouldn't medical science have a grasp on this whole thyroid thing by now?

And why isn't this disease taken more seriously?

Before all this happened to me I knew thyroid problems existed but did not think they could have such an impact on someone's life.

It just attacks every part of you , physically, mentally, emotionally and spiritually.

This is truly a nightmare disease.


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## CA-Lynn (Apr 29, 2010)

A PCP wouldn't be educated/trained/experienced enough to come up with alternate diagnoses.

Creepingdeath - this is not a nightmare disease. Putting things in perspective, this disease won't kill you. So many others can and do.


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## bigfoot (May 13, 2011)

creepingdeath said:


> It's the year 2014. shouldn't medical science have a grasp on this whole thyroid thing by now?


I often wonder about this, too. We can grow tissue in a petri dish, get DNA information from a strand of hair, and do laser surgery on eyeballs. But every day we seem to improperly diagnose and ineffectively treat plenty of thyroid patients. Sure, we are probably in the minority here on the forums, but to me that is indicative of a larger problem. People should not be falling through the cracks like they do. Hashimoto's Disease was discovered in the early 1900s by the Japanese doctor of the same name. That means we've had over 100 years to perfect our techniques. Yet it seems like we are moving at glacial-like speed. <climbs off of soapbox>

:blink:


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## creepingdeath (Apr 6, 2014)

CA-Lynn said:


> Creepingdeath - this is not a nightmare disease. Putting things in perspective, this disease won't kill you. So many others can and do.


The symptoms I have personally are nightmarish to me.

I think this disease treats everybody differently.

Some people have minor symptoms like being tired or gaining some weight.

And others become bedridden with extreme debilitating symptoms.

Without treatment or medication for this condition you will eventually die.

So if you look at it in terms of the big picture like getting trapped in a long term situation without your replacement thyroid medication you will die.

So I say "yes" you can die from this disease...............


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## CA-Lynn (Apr 29, 2010)

It's unfortunate that the symptoms are nightmarish to you. So many others have had much more serious and chronically debilitating diseases.

No, you're not going to die of it......if you take the pill each day. It's cheap. Yes, it's long term.

I think you need to reframe this and compare it to cancer or lung disease or cardiac disease.


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## creepingdeath (Apr 6, 2014)

CA-Lynn said:


> It's unfortunate that the symptoms are nightmarish to you. So many others have had much more serious and chronically debilitating diseases.
> 
> No, you're not going to die of it......if you take the pill each day. It's cheap. Yes, it's long term.
> 
> I think you need to reframe this and compare it to cancer or lung disease or cardiac disease.


There is no comparison to diseases like that.

But people with those conditions are eligible for SSD or SSI.

Hashimoto's I think not.

So I have to try and find a company or someone who will hire me with these debilitating symptoms.

My line of work is hard enough without feeling sick and being in pain.

I need a cure for this and fast or I may find myself trapped in that situation without medication or even food.

NOW if that isn't nightmarish enough then I don't know what is.

And if I have to take this medication for life then the disease is also for life.

I would think that would put this disease in the category of being chronic.


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## CA-Lynn (Apr 29, 2010)

No one is saying it's not chronic. But taking one pill a day, getting the dose changed as needed, is [in the grand scheme of life] not that big a deal.

The take away message is that thyroid disease is not debilitating and if you find it to be that way, then it warrants further investigation into other causes.


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## creepingdeath (Apr 6, 2014)

CA-Lynn said:


> No one is saying it's not chronic. But taking one pill a day, getting the dose changed as needed, is [in the grand scheme of life] not that big a deal.
> 
> The take away message is that thyroid disease is not debilitating and if you find it to be that way, then it warrants further investigation into other causes.


No big deal if the once a day pill would work. For me this has not happened after taking it for over a year.

My symptoms are debilitating and are from Hashimoto's...........I have been checked from top to bottom and found to have nothing else wrong with me that could cause these symptoms.

Your symptoms from a previous post show they were not all that bad .

And that you have gotten relief from taking thyroid replacement.

http://thyroidboards.com/forums/topic/9705-hashimoto-symptom-poll/

Like I said earlier , everyone's symptoms are different with thyroid disease. And everyone responds to thyroid med's differently.

I have talked to people who have had no symptoms at all and others who are practically bedridden from it.

SO............ "Thyroid disease can sometimes be debilitating", 

Because your experience with this disease may not be all that bad does not mean everyone else's is that way .


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