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Not MS, not what??

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Old 01-20-2010, 07:37 PM   #1
Join Date: Jan 2010
Location: Naperville, IL
Posts: 2
justagirlwithms HB User
Not MS, not what??

I have MS and my mom has had her thyroid removed. For the past 6-9 months, I have felt like YUK - nausea, tremors, heart palpitations, irritated eyes, fatigue/weakness and since many symptoms were common to MS, I just figured that was advancing. I have two small boys so as if my MS weren't enough, this was getting to be a problem. I saw my MS neuro, and he ran an MRI and some labs. My MRI looked good, and he suspected the reason for my symptoms was thyroid issues because even though my TSH was normal (3.5 on .5-5.0 scale) my antibodies were through the roof. I was elated because I thought I could go to an endo and get some help! Well, got to the endo and my hopes were dashed - she said my thyroid was fine, and that my symptoms must be due to something else. What, she could not say, but she flat out said that a normal TSH, even in the presence if antibodies, negates any chance that my symptoms are due to a thyroid issue. I just don't buy it, but I don't know what to do next. Hopping from one practitioner to another seems wasteful...anyone have any suggestions?

I thank you, and my boys thank you!

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Old 01-20-2010, 08:43 PM   #2
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Join Date: May 2008
Location: AZ
Posts: 2,251
javelina HB Userjavelina HB Userjavelina HB User
Re: Not MS, not what??

Ugh, another endo who doesn't deserve to be practicing medicine. You are right not to buy her incredibly wrong advice. It's practitioners like this that keep us hypo forever. Ok, rant over

Your TSH is very high, anything over 1-1.5 is considered high unless proven otherwise, especially with your symptoms. Look up the National Academy of Hypothyroidism for a really good explanation about how poor a test TSH is for diagnosing and monitoring treatment for hypothyroidism, expecially with Hashimoto's. You need hormone replacement to replace what your thyroid is not putting out.

Many of us here have had terrible luck with endos so you're not alone. You need to find a practitioner who understands how thyroid disease works and who will prescribe hormone replacement for you. This does not need to be an endo, a good family doc or naturopath or functional medicine doc will often be better. Some have good luck with DOs. Some post here for a good doc in their area, some ask pharmacists for leads to who prescribes desiccated thyroid (often an indication that they are more open-minded and progressive in their treatment). But you need to keep looking and find someone who can help you and not have that awful outdated mode of non-treatment your last endo had.

Old 01-20-2010, 09:01 PM   #3
Join Date: Jan 2010
Location: Naperville, IL
Posts: 2
justagirlwithms HB User
Re: Not MS, not what??

Thanks so much. It feels better just to have a little validation! I was beginning to feel crazy. Alas, I am no foreigner to self-advocacy so I will march on!

Ok, so anyone know a good family doc in the Naperville, IL area? I have one, but not sure I would classify him as "good."

Last edited by justagirlwithms; 01-20-2010 at 09:10 PM.

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