[jmkarlen]

#1060572

I had RAI in August. T3 and T4 have been normal for 3 months but my TSH has not budged at all since my diagnosis in June 2014. I was on synthroid for a month and taken off again because my TSH did not move at all. Now I have gained weight, have headaches, am not hungry, super tired, and having GI issues.

I am scheduled to do labs next week and am very anxious about what they are going to show. Looking to eliminate gluten from my diet as my next step. Anyone else experience these symptoms?

Soo frustrated with not feeling well.

[snelsen]

#1183444

Seems like you have most symptoms of being hypo. Big time.

I am unclear why they took you off Synthroid completely. You had an RAI, which pretty much destroyed the ability of your thyroid gland to make thyroid hormone.

My opinion, as another Graves’ person, is to refrain from eliminating gluten from your diet. Take one thing at a time. I am making an assumption that you have eaten food containing gluten all of your life, but have not had all this symptoms, including GI symptoms, all of your life. Seems much more likely to related to your Graves’/RAI roller coaster ride than gluten intolerance.

If you really want to remove gluten from your diet, a hard thing to do, with much less eating pleasure in my opinion, if it is not a compelling reason for doing this, wait until all Graves’ stuff is managed,and you are back to being you. This will happen! Really.

And, yes, I had ALL those symptoms when I was hypo. And I got that way when we tried to reduce my Synthroid.

Kimberly is so so good at explaining TSH, T3, T4, that I look forward to her response to your dilemma.
Shirley

[Kimberly]

#1183443

Hello – Doctors do like to see TSH come back to normal, as suppressed TSH is associated with an increased risk of bone loss and cardiac issues.

HOWEVER, for someone early in the treatment process for Graves’, TSH should *NOT* be used as a benchmark for deciding when to start replacement hormone or for adjusting the dose.

TSH is a substance produced by the pituitary gland that either directs the thyroid gland to produce more hormone or to put the brakes on thyroid hormone production. The amount of TSH produced generally depends on a “feedback loop” according to where our thyroid hormone levels (T3 and T4) are. When T3/T4 are too high (hypER) the pituitary shuts down production of TSH to try and tell the thyroid to stop producing extra hormone. When T3/T4 are too low (hypO) the pituitary cranks out TSH to get the thyroid to produce MORE thyroid hormone. With Graves’, the feedback loop can be interrupted, with TSH staying suppressed, even though T3/T4 are in the “normal” range. Researchers think that Graves’ antibodies might be responsible for this effect.

If you pull up the “Treatment Options” thread in the announcements section of the forum, you can find the guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association on treating hyperthyroidism. It would be helpful to bring this with you to your next set of labs. On page 603 (page 11 if you are downloading as a PDF), the guidance states that: “Since TSH levels may remain suppressed for a month or longer after hyperthyroidism resolves, the levels should be interpreted cautiously and only in concert with free T4 and T3 estimates.”

I would suggest bringing this to your next appointment – and if possible, seeing if you can get your labs done more quickly.

Hope that you can get some relief soon!

[jmkarlen]

#1183445

Thank you for the information. I went and did my labs today and will be waiting to hear from my doctor tomorrow.

Meanwhile, I am still having headache, fatigue, and tummy issues. Boo!

[jmkarlen]

#1183446

My endo just called and is putting me back on 88 mgs of synthroid.

T3 0.7
T4 0.3

TSH 35.79

Hoping I start to feel better in the next few weeks. I am just feeling so crummy right now.

[Kimberly]

#1183447

No wonder you aren’t feeling well! Definitely file away a copy of that lab report. The next time your doc wants to make adjustments based on TSH alone, remind him/her about what the results were this time around. As patients, we often have to be very assertive in order to get the care that we need.

Hope that you will start to see your symptoms resolve now that you are back on the meds!

[JEH]

#1183448

I was diagnosed with Graves in 1998 and almost immediately after I started ATD I began to gain weight and became seriously constipated, both symptoms of hypo. The doc told me to go on a low carb diet and eat more fiber. Very helpful (sarcasm intended)

My experience has been that I continue to have both hypo and hyper symptoms interchangeably even when my labs are normal as they are now, although the symptoms are minor when compared to how it was when I was first diagnosed. In 1998 my bp was over the top, my heart rate was 180 bpm, and the eye problem had already started. So now I only pay attention to my eyes, bp and heart rate. The rest I have accepted and adapted to. I think I would drive myself crazy if I tried to get back to the way things were before my diagnosis. After 17 yrs I have learned to accept that I have a chronic condition and to be glad it’s not fatal.

Good luck to you.

Jane

[JEH]

#1183449

I was diagnosed with Graves in 1998 and almost immediately after I started ATD I began to gain weight and became seriously constipated, both symptoms of hypo. The doc told me to go on a low carb diet and eat more fiber. Very helpful (sarcasm intended)

My experience has been that I continue to have both hypo and hyper symptoms interchangeably even when my labs are normal as they are now, although the symptoms are minor when compared to how it was when I was first diagnosed. In 1998 my bp was over the top, my heart rate was 180 bpm, and the eye problem had already started. So now I only pay attention to my eyes, bp and heart rate. The rest I have accepted and adapted to. I think I would drive myself crazy if I tried to get back to the way things were before my diagnosis. After 17 yrs I have learned to accept that I have a chronic condition and to be glad it’s not fatal.

Good luck to you.

Jane

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