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Old 09-25-2004, 09:24 AM   #1
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Unhappy Desperate...please help

I've been soooo tired and achey for such a long time. Now my hands and feet are really hurting. After suffering from chronic hives for two years my allergist found that my thyroid antibodies were "off the chart" according to him. They were over 700. He put me on .25 snythroid daily. My latest blood testing showed my TSH at 7.07. This has been after taking snythroid for 4 months. My allergist really doesn't want to see me again.....My PCP hasn't a clue. My question is, should I go to a rheumatologist or an endocrinologist? My case is rather complicated since I suffered from Lyme's disease in 2002. I was treated immediately for it but it is still showing up in blood tests. I also have extremely high antibodies to parvovirus and epstein barr........Does anyone have a suggestion as to what type of doctor I should see? I need to start feeling better!! Thanks in advance to any replies.

 
Old 09-25-2004, 10:11 AM   #2
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Re: Desperate...please help

Hello bubs,

I am sorry that you are feeling so lousy. I am not the person to say which doctor you should see. There is one thing that I see wrong with your tsh. It looks like it is way too high. Do you have the symptoms of hypothyroid?

When my tsh was 6.45, I felt terrible. I was constipated, losing hair on my head, depressed, fluid retention. All the symptoms of hypo.

Someone else here with more knowledge will help you.

Have a nice day

 
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Old 09-25-2004, 11:22 AM   #3
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Re: Desperate...please help

Yes, I have all the symptoms you mentioned. I have never been so tired in my entire life! I didn't know if my TSH at 7.07 was considered really high or not. Did your hands and feet hurt when yours was high?

 
Old 09-25-2004, 11:29 AM   #4
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Re: Desperate...please help

Mine went to 20 and that is when I felt very very bad. Yes my hands hurt with a numb feeling. Some people get carpal tunnel syndrome with hypo.

Your tsh is not way off but it is not right. With it being like that you surely don't feel well. I would say you need to up your dose.

The doctors are suppose to also test the freet3 freet4.

I would give that doctor a call and tell him how you feel.

 
Old 09-25-2004, 11:35 AM   #5
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Re: Desperate...please help

I appreciate your input. It honestly has been so frustrating trying to figure this all out myself. These boards are so full of good information. The T3, T4 thing kinda has me confused. My allergist also said that Hashimoto's can cause chronic hives. Has anyone heard of this? I've not sent any reference to it on this board.

 
Old 09-25-2004, 12:56 PM   #6
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Re: Desperate...please help

Bubs, you TSH is quite high compared to the rest of the population, who have a TSH closer to 1. Your dose of synthroid is also very low (in fact it's the lowest) - it is customary to start out that low but to build up to an optimal dose. The fact that your doctor as not done this (along with relying solely on TSH) leads me to believe he/she isn't very knowledgeable about thyroid disease.

The tests that Betty mentioned are Free T4 and Free T3 and they are measurements of thyroid hormones that are available for your body to use. The thyroid produces two main hormones, T4 and T3 and they circulate in your body bound to proteins. For them to be of use they must be "freed". A measurement of these freed hormones tells you a lot more than just a T4 or T3 level.

This is a link to a post made my Midwest1 about the different types of doctors you can use and how to find a good one - she explains it much better than I could.

http://www.healthboards.com/boards/showthread.php?p=1234119#post1234119

As for Hashimoto's causing hives I can't help you, but I wouldn't be surprized. The list of symptoms that the thyroid is responsible for is extensive and insidious.

Best of luck and if you have any more question please post them!
Nat
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Old 09-25-2004, 02:42 PM   #7
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Re: Desperate...please help

Quote:
Originally Posted by Gopherhead
As for Hashimoto's causing hives I can't help you, but I wouldn't be surprized. The list of symptoms that the thyroid is responsible for is extensive and insidious.
Bubs, I did a little snooping around the boards and you'd be surprized how many people suffer from hives and hypoT. It can be caused by your thyroid, but it can also be a reaction to the synthetic thyroid (synthroid), or more specifically the binders / fillers used in the meds.

Here is the search I did, cut and paste the URL minus the [url] [/url] remarks and you'll see what I mean.

http://www.healthboards.com/boards/search.php?searchid=317134

Nat
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Old 09-25-2004, 06:01 PM   #8
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Re: Desperate...please help

Nat...I tried to go to that posting, but it was no longer available?? Anyway, I appreciate the input. This board is so helpful and I finally feel as though there is light at the end of the tunnel. I took two synthroid (.25 )today and I think I've noticed a difference already. Is that possible? I've had such a horrendous last coupla months; I hate to be too optimistic. Thanks again for all your help. It is so much appreciated.

 
Old 09-25-2004, 06:35 PM   #9
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Re: Desperate...please help

Nat has good information huh? I just wanted to say that whenever you get your bloodtests, make sure and get a copy. By law you are entitled to get your copy.

When you get it, post your results here with the ranges. Nat or someone will interpret them for you.

Some doctors only go by the tsh, and that is not right. They are just not updated on things I guess.

Betty

 
Old 09-26-2004, 06:03 AM   #10
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Re: Desperate...please help

Bubs, sorry the link didn't work. If you go to the search page ([url]http://www.healthboards.com/boards/search.php?[/url] ) and type in Hives and choose the Thyroid board (and choose "show as posts") you'll get the same set of results I did.

Yes, it's possible an increase made a difference - some people are senstive to the T4 and they notice an improvement sooner than others. I know I was one of those. It might help if you kept a log of what your symptoms were and when you experienced them - this way you'll know what to expect when you next need an increase.

Nat
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Old 09-26-2004, 06:24 AM   #11
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Re: Desperate...please help

Here's more about the association between hives (urticaria) and autoimmune thyroid disease ~
This is from worldallergy.org ~
"Patients with chronic urticaria have an increased frequency of Hashimoto's thyroiditis. An association has been noted with the presence of antibodies to thyroglobulin, or a microsomal-derived antigen (peroxidate) even if patients are euthyroid. The incidence of thyroid autoantibodies in patients with chronic urticaria is approximately 24%. Thyroid function and thyroid antibodies should be checked in all patients with chronic urticaria. There are no data to suggest that either of these antibodies are pathogenic in terms of hive formation and it is believed that these are associated, parallel, autoimmune events."

And this is from allergyweb.com ~
"Autoimmunity to thyroid tissue has also been associated with urticaria. In fact, treatment with thyroid supplements in euthyroid individuals (who have elevated anti-thyroid peroxidase and/or anti-thyroglobulin antibodies) has been shown to be beneficial (Rumbyrt J, et al. J Allergy Clin Immunol 1995;96:901-5)."

Hope you find a good doctor very soon, bubs. Did you find my suggestions for do so?

 
Old 09-26-2004, 11:52 AM   #12
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Re: Desperate...please help

I'm still in search of a doctor. Another question, even IF my free T3, T4 is off, what else would a doctor except prescribe synthroid which is what I'm taking now. I have all the symptoms of hypothyroid and my TSH was 7.07 and antibodies were "off the chart". I'm sure my dosage needs increased from .25 but do I still need more testing for the T3, T4? I'm confused. This is very new to me. I appreciate all the good info and I'm optimistic that I'll be feeling better soon.

 
Old 09-26-2004, 12:47 PM   #13
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Re: Desperate...please help

I think that if you are not getting enough t3, he will put you on t3 supplement.

Someone else can tell you more.

Good luck

 
Old 09-26-2004, 12:54 PM   #14
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Re: Desperate...please help

Quote:
Originally Posted by bubs
I'm still in search of a doctor. Another question, even IF my free T3, T4 is off, what else would a doctor except prescribe synthroid which is what I'm taking now. I have all the symptoms of hypothyroid and my TSH was 7.07 and antibodies were "off the chart". I'm sure my dosage needs increased from .25 but do I still need more testing for the T3, T4? I'm confused. This is very new to me. I appreciate all the good info and I'm optimistic that I'll be feeling better soon.
Bubs, sorry to have confused you even further You are on synthroid (albeit too little of it) because of your test results and having the Free T levels checked would only emphasise this. The reason you need to get these two hormones tested is to chart progress and see if your meds need to be increased / decreased.

Your FreeT levels are markers of actual thyroid hormone in your body that you can use, by checking if they are high or low you know if your current dose of synthroid is working. Both can be low, or it can be just one, this would help determine which meds you need (either just T4, as you're getting now, or something with both T4 and T3, or just T3) and how much of them. Monitoring your TSH once you start treatment isn't the best way to go about it; some people need to have their TSH very low, well below were most doctors think it should be, before their FreeTs move up to where they feel normal again.

HTH
Nat
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Old 09-26-2004, 08:40 PM   #15
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Re: Desperate...please help

bubs:

You asked about finding a doctor. That is the most important thing you do. Find a good doctor. I'm still on a quest to find a good one myself. Its not easy. I've asked everyone I know, and then I've asked all those people to ask their doctors if they know of an Endocrinologist who handles THYROID as a specialty. Ask the pharmacists in your area, go into a compounding pharmacist if you have to...they do a lot of hormone stuff. You want to keep asking about that specific specialty though. You don't want some ovary guy or Diabetes guy like a lot of Endos are. I've made that mistake and its a waste of time.

Quiz the phone-answerer at the office, and ask what kind of tests they run, T3f, T4f and what kinds of meds they script for. If they say only Synthroid...you might want to put that doc at the bottom of your list. You want someone who will provide the full gamut of options.

Sometimes, Naturepaths can be good or Holistic docs.


Make appointments like you were job hunting...then take a wild, but focused run at all of them. Bring a notebook with all your latest test results including doctors notes. Accept that you will be dragging yourself in an out a few places until you find the right one.

If you live in the Northeast, you'll at least be in a good area for good doc hunting. I'm in CT and think I might wind up taking a stab at a Doc in Boston next. I just need someone to drive.

Good luck! Your health is worth the effort.

~S

 
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