# My Twin And I.



## Gudrun (Mar 19, 2010)

Hopefully by the end of this you're not all telling me to get a blog.:winking0001:

In 2005, I had my second child. When she was about 5 months old, I started feeling very nervous and losing weight rapidly. I had these deep grooves in my nail beds, diarrhea, tightness in my throat, horrible hair loss...you know the drill. My chiropractor and a friend with hashi's thought I had a thyroid problem. Not surprisingly, I left my first doctor's visit clutching a business card for a "really great therapist".

Saw a few more doctors who told me it was anxiety, depression (I stay home with two young kids so of course I need prozac, whatever) allergies. One tried to give me muscle relaxers for my throat. I gave up on doctors and my symptoms resolved themselves eventually.

Things were okay, I went on to have baby #3. I would get hit with these waves of fatigue but I thought it was normal and learned to cope. They told me it was probably my low blood pressure. Late last spring I weaned my son and the symptoms started again. This time I had hyper and hypo symptoms. It took me months to make an appointment. My doctor did bloodwork and said it was "normal" (T4 and FT3 are at the low end of normal) but I have high cholesterol and low sodium. Thank GOD he thought something was amiss and scheduled and ultrasound. I have a multinodular goiter and an appointment with an endo. I feel like I'm halfway there, you know. A GP who listened and a referral! It's still so hard not knowing exactly what's wrong with me though. I'm trying to be patient.

Now my identical twin had been having health issue of her own: facial edema, weight loss, severe inflammation in her hands, tinnitus...and decided to have her thryroid checked. She has a vitamin D deficiency and high cholesterol. Dr. #1 told her to "eat from the rainbow", Dr #2 told her to see a psychiatrist. Because therapy will fix the swelling in her face and hands and her irregular periods. Despite the fact that her TSH had gone 2.4 to 3.98 to 1.2. Normal right? Should being treated worse than a criminal be on the list of symptoms for thyroid disease? I would have her see my doctor but she's in Illinois and I'm in Cali. My mom thinks she can get a referral through her doctor. Fingers crossed for her, I really didn't want this for her too.

That's my story, I'm so happy I found this place. I'm following a few of your stories and my thoughts are with you.


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## Andros (Aug 26, 2009)

Gudrun said:


> Hopefully by the end of this you're not all telling me to get a blog.:winking0001:
> 
> In 2005, I had my second child. When she was about 5 months old, I started feeling very nervous and losing weight rapidly. I had these deep grooves in my nail beds, diarrhea, tightness in my throat, horrible hair loss...you know the drill. My chiropractor and a friend with hashi's thought I had a thyroid problem. Not surprisingly, I left my first doctor's visit clutching a business card for a "really great therapist".
> 
> ...


Did you read the book, "Prozac Nation?" Boy, these doctors. A person should not have to pay for such shoddy treatment and fluff-offs.

Thanks for sharing your story and I know you are worried about your twin as well. Me too.

Have her join us here if she will? That would be nice.


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## Gudrun (Mar 19, 2010)

I think the worst part is they make us doubt ourselves. You can tell them that you're not depressed but they'll twist the symptoms of your legitimate illness to fit.


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## Gudrun (Mar 19, 2010)

Here are my labs. I'm frustrated about the second set. The nurse over the phone kept insisting that she was giving me the numbers for my Free T3 but kept reading results for a T3 result. I got tired of arguing with her but realize now I should have asked to speak to my doctor. So I don't have the most recent results for my Free T3 after waiting over a week, just the useless T3. My TSH went down but during both tests I was going hyper again (naturally).

TSH- 1.67 [.358-3.8]
T4-.93 [.76-1.46]
T3 free- 240 [210-440]
T3- 120 [76-181]

TSH- 1.27 [.358-3.8]
T4- 1.00 [.76-1.46]
T3- 105 [76-181]


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## Andros (Aug 26, 2009)

Gudrun said:


> I think the worst part is they make us doubt ourselves. You can tell them that you're not depressed but they'll twist the symptoms of your legitimate illness to fit.


Hey; that is what the sociopath does. Plants the seed of doubt!:scared0011:

I am 67 and in "my day", it was valium. Ever since I was about 18, doctors wanted to put me on Valium. I would have none of it. Never took one and never will.

They figure if they put you in La La land, you will keep quiet and they will have done their job.

Thank you for your labs and ranges. Yes; you are headed to hyper it looks like.


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## Gudrun (Mar 19, 2010)

I can swing between hyper and hypo right? My doctor noticed that my BP and weight has been all over the place, my symptoms as well. It's so frustrating, to have both. Some days I'm freezing cold and lethargic, other days I feel like I drank a pot of coffee and can't take hot baths without overheating. My newest symptom is a very swollen tongue, it looks scalloped on the edges. It seems to stay that way if I'm hypo or hyper.


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## Andros (Aug 26, 2009)

Gudrun said:


> I can swing between hyper and hypo right? My doctor noticed that my BP and weight has been all over the place, my symptoms as well. It's so frustrating, to have both. Some days I'm freezing cold and lethargic, other days I feel like I drank a pot of coffee and can't take hot baths without overheating. My newest symptom is a very swollen tongue, it looks scalloped on the edges. It seems to stay that way if I'm hypo or hyper.


Oh, yes and that is why some of these antibodies' tests are so important. They actually confuse the issue and we start to see strange labs w/ all too frequent fluctuations.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies),TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html


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## Gudrun (Mar 19, 2010)

Thank you so much Andros, I'll be sure to have my Endo do those tests. I know they're doing an FNA and maybe an uptake scan. I asked my GP how many nodules I have and all he could tell was "a lot". My goiter is becoming visible form the outside. *sigh*

My biggest fear is that I've come this far and the endocrinologist won't help me. Irrational but understandable given how I've been treated in the past.

One more question if you don't mind? I had a lot of vision problems during my second pregnancy, the one that resulted in postpartum hyperthyroid. An eye doctor told me after she was born that I had swelling in my corneas that is common in pregnancy but mine was the worst she'd seen. She was unable to give me contacts. My eyes now often get gritty and bloodshot, especially when I'm feeling hypo. Should I be concerned about TED?


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## Lovlkn (Dec 20, 2009)

Gudrun said:


> Here are my labs. I'm frustrated about the second set. The nurse over the phone kept insisting that she was giving me the numbers for my Free T3 but kept reading results for a T3 result. I got tired of arguing with her but realize now I should have asked to speak to my doctor. So I don't have the most recent results for my Free T3 after waiting over a week, just the useless T3. My TSH went down but during both tests I was going hyper again (naturally).
> 
> TSH- 1.67 [.358-3.8]
> T4-.93 [.76-1.46]
> ...


Gudrun,

The T3 is not a useless test and "will do" if a Free T3 is not run to give general idea of where you are.

I think you are confusing it with a T4 which is a useless test , it's the Free T4 that you need not a T4.

As far as your labs, they look completely normal, I wouldn't say you are on your way to hyper quite yet. Small fluctuations are completely normal but with the multi nodular goiter it could definitely give you ups and downs.

I just read your last post and wonder if they might consider surgical removal because of the goiter size increasing. If that is the case then there is no need for an uptake which could irritate your eyes even more. You should make an appointment with a doctor who specializes in TED for a baseline exam. Sometimes thyroid hormone movement can cause the irritation of the eyes.


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## Gudrun (Mar 19, 2010)

Lovlkn said:


> Gudrun,
> 
> The T3 is not a useless test and "will do" if a Free T3 is not run to give general idea of where you are.
> 
> ...


I know. I thought for sure they would show something, anything out of order this time. It's so discouraging. Even with a goiter I start to think maybe I'm just a crazy person with bad hair and high cholesterol.

Sorry about the confusion with the T3.


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## Lovlkn (Dec 20, 2009)

Gudrun said:


> I know. I thought for sure they would show something, anything out of order this time. It's so discouraging. Even with a goiter I start to think maybe I'm just a crazy person with bad hair and high cholesterol.


LOL, it must stink not having the labs to justify a doctor writing you a prescription to make you feel better. I went 7 years without an official diagnosis so I know where you are coming from.

I also want to mention when I thought I was finally going to get my official DX my labs came back completely normal - just like yours but less than a year later they went hyper and I got my dx. I think the antibodies tests are a good place to start to get an official dx if your issue is Graves or Hashi's.

How often have you had thyroid labs? Do you have any history in lab's from a gyno? You should ask for paper copies of all thyroid tests run for your own records.

Does your goiter interfere with swallowing?


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## Gudrun (Mar 19, 2010)

I'm starting to notice now that it's harder to swallow certain things if I don't chew them really well, like raw carrots. Some days it feels so tight that I feel like something is stuck in my throat. What's worse is it causes this dry cough that makes me gag.

I had labs run in 2005 (TSH only) and twice since late January. I can check with my OB/GYN. Thanks!


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## Andros (Aug 26, 2009)

Gudrun said:


> Thank you so much Andros, I'll be sure to have my Endo do those tests. I know they're doing an FNA and maybe an uptake scan. I asked my GP how many nodules I have and all he could tell was "a lot". My goiter is becoming visible form the outside. *sigh*
> 
> My biggest fear is that I've come this far and the endocrinologist won't help me. Irrational but understandable given how I've been treated in the past.
> 
> One more question if you don't mind? I had a lot of vision problems during my second pregnancy, the one that resulted in postpartum hyperthyroid. An eye doctor told me after she was born that I had swelling in my corneas that is common in pregnancy but mine was the worst she'd seen. She was unable to give me contacts. My eyes now often get gritty and bloodshot, especially when I'm feeling hypo. Should I be concerned about TED?


I certainly do not mind. It just so happens that I had bulged corneas and I do mean bulged. From the side, my eyes looked like teats. It was a very very bad condition and of course, in my case this was all from a very advanced case of 
Graves' disease left untreated because doctor's all said it was in my head. There was nothing wrong with me. Hah!!

That said, I would advise you to see a Board Certified Ophthalmologist who is used to dealing with thyroid related eye problems.


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## Gudrun (Mar 19, 2010)

My appointment with the endo is tomorrow. I have NO idea what to expect and am really, really nervous. My husband is going with me. Will they do the FNA tomorrow you think? My step mom assured that it is very, very painful. So I got that going for me and my nerves. Actually the pain doesn't scare me as much as...I don't honestly know. Afraid they'll find something, afraid they won't I guess.


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## Twin1 (Mar 21, 2010)

Of course she told you it was painful. Do yourself a favor and cut them off for awhile. What time is your appt?


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## Gudrun (Mar 19, 2010)

Well, I'm not sure what to think. The endo contradicted everything my GP said about my thyroid, told me I didn't need the FNA and said supposed he would test for antibodies but it was pretty pointless since wouldn't treat me even if I had Hashimoto's because my TSH is normal. When I asked if my thyroid could be going from hyper to hypo as in Hashitoxicosis he dismissed it and said he would question anything I've read online. TSH doesn't really fluctuate that much, unless it's a bad error, you're either hyper or hypo.
I guess I need a second opinion?


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## Lovlkn (Dec 20, 2009)

Gudrun said:


> Well, I'm not sure what to think. The endo contradicted everything my GP said about my thyroid, told me I didn't need the FNA and said supposed he would test for antibodies but it was pretty pointless since wouldn't treat me even if I had Hashimoto's because my TSH is normal. When I asked if my thyroid could be going from hyper to hypo as in Hashitoxicosis he dismissed it and said he would question anything I've read online. TSH doesn't really fluctuate that much, unless it's a bad error, you're either hyper or hypo.
> I guess I need a second opinion?


Don't give up and find another endo to go to. I find it best never to tell any MD that you go to the internet for information as most are so insecure they cannot handle it.

Early in thyroid disease lab results can go from hyper or hypo to normal. TSH would not be the best test to track these changes so you may end up needing to pay out of pocket for the TSH, FT3 and FT4 in order to get some lab history to take into your next doctor.


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## Gudrun (Mar 19, 2010)

My most recent Free T3 was 230 (210-440) I asked if I should be concerned that it was on the border and he just shrugged and told me that it was fine with a normal TSH. I asked if I could be in the early stages of thyroid disease and told was "sure, it's possible" but seemed to think it was no big deal.

What was weird is that he told me that they probably missed my postpartum hyperthyroid because it can come and go within weeks and labs may only catch people in the middle of hypo/hyper but then went on to say such fluctuations didn't happen, at least not often enough to be worth concern.


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## Andros (Aug 26, 2009)

Gudrun said:


> Well, I'm not sure what to think. The endo contradicted everything my GP said about my thyroid, told me I didn't need the FNA and said supposed he would test for antibodies but it was pretty pointless since wouldn't treat me even if I had Hashimoto's because my TSH is normal. When I asked if my thyroid could be going from hyper to hypo as in Hashitoxicosis he dismissed it and said he would question anything I've read online. TSH doesn't really fluctuate that much, unless it's a bad error, you're either hyper or hypo.
> I guess I need a second opinion?


I think that guy needs a serious thump on his head!! I replied in the other thread.

What poppycock!

{{{{Gudrun}}}}


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## daisy_ysiad2002 (Aug 17, 2009)

look up adrenal fatigue..they can mimic most of these symptoms.


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## Phoenix (Mar 20, 2010)

Gudrun,

Have they ever checked your antibodies? TSI, TPO, and anti-thyroglobulin would be where I would start if they have not done them. Also, have they ever done an uptake scan or ultrasound of your thyroid?

Doctors amaze me sometimes. They take the hipocratic oath to help us and to do no harm... but isn't doing nothing in some cases, doing harm?

Phoenix


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