4 replies to this topic

[elizabeth333]

Advertisement

Hello,

  I was diagnosed with Graves Disease in October 2013.  I did not take medication, initially, because my levels were subclinical. After a few months, though, my T3 was up to 3.06 ( normal = 0.7-1.7) and my T4 was at 3.48 (normal=0.75-1.54). My TSH was undetectable and my TSI was very high. At this point I began to have symptoms of Graves- shakiness, increased heart rate, loss of menstruation, and constant hunger, no matter how much I ate. I started taking Methimazole, 10 mg/day, and in the next few months the symptoms disappeared and my T3 and T4 levels began to stabilize.  My TSH remained undetectable, which my endocrinologist said was normal, since it is often the last to respond.  

 

At this point, while feeling generally healthy, I made the decision to leave my job and home and set out driving across the U.S. with the plans of moving from the east coast up to Alaska.  Unfortunately, I ended up having to come home after reaching California because of recurring viruses (sore throat, white spots in my throat, ear ache) and extreme lack of energy and exhaustion.  It was a hugely disappointing decision, and I am continuing to be unsure of what is going on. Though I am physically better, the extreme lack of energy, which seems to be turning into mild depression, continues. I thought I might be turning Hypo, but I have had a ton of blood work and as of last week my levels were: T3 = 88 (normal = 80-200 (not sure why new doctor has new scale), free T4= 0.71 (normal = 0.93-1.7) and my TSH = 2 (normal = .27-4.2) I am currently taking 7.5 mg Methimazole, daily, and my endocrinologist told me to continue this dose and do blood work again in a month. I have been checked for Mono and Lyme Disease, and my current and past endocrinologist told me that my Grave's should not be making my immune system not function properly. (in connection to getting sick on and off so frequently). 

 

I am now looking into alternative medicine. I recently stopped eating gluten, sugar, and dairy and am wondering about the Paleo diet, which I had read can be beneficial with people with autoimmune disorders.  Overall, I just don't feel like myself anymore. I went from being incredibly active to not having the energy to do much at all, and there doesn't seem to be an answer for how I'm feeling. I wanted to reach out to see if this seemed like a "normal" Grave's response, or if it seems that there are other things going on, as well as the Grave's.

Thanks so much!

Elizabeth

[Misty]

Hi Elizabeth, and welcome. Your levels are hypothyroid, either below or at the bottom of the normal range for TT3 and FT4. The goal when taking methimazole is to keep the FT4 in the upper part of the normal range.

 

You need a decrease to 5 mg and then new labs in a couple of weeks. The FT3 is more accurate than the TT3 as hormones and some medications can make the TT3 artificially high.

 

The TSH will stay artificially low while you have Graves' (TSI) antibodies in your system, so the FT4 and  TT3 or FT3, the actual thyroid levels, are what's important.

 

Most of us would feel awful with those levels. Exhaustion, depression, and a sluggish immune system are typical of those levels, and they also increase antibody production as the thyroid has to "struggle" to work properly with inadequate FT4.

 

Can you ask your doctor for a dose decrease to get your FT4 back up into the normal range?

 

Best wishes,

Yvonne, remission since 2005

[elizabeth333]

Hi Yvonne, 

 Thank you so much for your response.  I will definitely get in touch with my endocrinologist and consider going down on my medication. Any chance that you have had luck with using diet and supplements as a way to challenge the autoimmune response?

Elizabeth

[mmztcass]

Hi elizabeth and welcome:

 

We have a section here called Thyroid 101 which talks about the dietary/environmental triggers as well on the supplements to avoid. 

 

I had to eat pretty nearly all organic and GMO-free to not to have any symptoms.  The chemicals and toxins in the processed foods and many other foods and such that may be good for us were horrible for me.  I have to be careful when I eat out which I rarely do nowadays, maybe once every other month.

 

{{{hugs}}}

[JasonJay]

Hello Elizabeth,

 

welcome to Hypoland! We have very similar experiences and symptoms. Youre on too high of a dose of methimazole and your numbers are low range/hypo this is why you feel terrible. The good news is youll feel much better with a dose reduction within a few days/weeks. So try and trek through this discomfort for now but be happy to know it wont last and youll be back in your old happy healthy form soon enough.