Thyroid Weight Problem??

[lanamp]

I have Grave's Disease, but have been in remission for a year and a half. All thyroid tests, every 6 weeks, have been normal. When first treated with methimazole, I gained 60 lbs. After I was in remission I started trying to lose this excess weight. I was able to lose 40 lbs in 5 months by eating fewer than 1300 calories per day and exercising at least 3 hours per day. As soon as I went back to normal eating and exercising, I gained it all back! Not more, just right back to where I started! I had never had a weight problem before. Now, if I step  up my diet and exercise, I can lose a few pounds, but immediately gain them back when I go back to normal. I am not sedentary and do not have a horrible diet normally. Please help, very frustrating!!

[leilajax]

As Barb states, you definitely can have both Grave's and Hashimoto's.  My TSI (Grave's) is high as well as my TPOab and Tgab (Hashi).  I have been told by others on this forum that having both can put you in a normal thyroid net result, even though you swing back and forth.  I haven't found a doctor who can treat it, yet and I've been to 2 PCPs, 3 endos, a rheumatologist, and an ENT.  I've also seen a specialist at Hopkins that said until my TSH raises into hypo, they can't treat me.  I fully understand this as the risk of pushing me into hyper is likely.  However, waiting for my immune system to kill my thyroid enough to put me hypo is wreaking havoc on my body!  I am hoping that the 2 day scan, that you kindly confirmed on one of my threads was the radioactive iodide uptake scan, will prove that my thyroid needs to come out.  At least then I will only suffer the hypo part and can be put on meds.  Again, I agree with Barb in that you need the TSI, TPOab, and Tgab tests.  My PCP wouldn't order them nor did my endo order them.  The rheumatologist ordered them and that's when I was finally diagnosed!  Scary!  Good luck and keep us posted!

[Barb135]

Unfortunately, even HEAD endo's often aren't worth a cr@p.  TSH will not pick up all thyroid dysfunction, because it won't tell you if you have Hashimoto's, nor will it tell you whether or not your actual thyroid levels are adequate - it merely "assumes" that they are.  

With all due respect, I'd have to kick your endo to the curb and find someone else, because my TSH stays at < 0.01 and every effort to lower my medication to bring it up, have made me extremely ill.

If you can't get your doctor to test the FT's, you can order the tests from a online site.  You order/pay for the tests, they send (e-mail) you a lab order and tell you what lab to go to, in your area.  You go get the blood draw then about 2 days later, they e-mail you the results, followed up by a hard copy in the mail.  The cost for TSH, FT3 and FT4 is about $85.  It's not covered by insurance, but if you can't get the tests any other way, it's worth it.  There are several sites, but the one I used was healthcheckusa and I had very good luck with them.

Sometimes, if you go to your doctor with FT labs in hand and can show them that levels are low, you'll get better treatment.  Since you'll be following up with your pcp, it might be a good idea to have the labs in hand when you see him; could save some time.

[lanamp]

My Endo Dr. flat out refused to do anything other than TSH stating "TSH is the most sensitive test for picking up thyroid dysfunction." (Should I also let you know he is the HEAD of the Endo Dept with my insurance carrier.) My TSH was still the same 1.58. I know the other tests, which I have had done with other drs, are also routinely given and the data is very helpful. I was very frustrated! When I emailed him back about my recurring issues, he told me "many medical (and non-medical) issues can mimic thyroid disorder." ?? No Joke!! That's why it usually takes so long for people to be diagnosed, I'm aware of this. Due to my test results, he recommended I follow up with my regular Dr. Guess that's the best brush-off I'm gonna get. Wonderful!! Guess I get to start all over-AGAIN!! GRR!!!

[Barb135]

Yes, Graves would be diagnosed, based on a separate test.  Thyroid Stimulating Immunglobulin (TSI) is the definitive test for Graves.  I  questioned the diagnosis because early stages of Hashimoto's can also be characterized by hyperthyroidism and a lot of people "assume" Graves, when a person is hyper, but that's not always the case. The "swings" in Hashimoto's can last for long periods, at a time.  

Yes, it's possible to have both Hashimoto's and Graves.  You should ask to get tested for Hashimoto's.  The antibody tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab).  You need them both, because some people have one or the other, some have both.  Hashi's can't be ruled out without them both.

With Hashimoto's, it's not unsual to have symptoms long before labs indicate a problem.  If you're only getting TSH done each time, you really don't know what's going on, because TSH doesn't always correlate with the actual thyroid hormone levels i.e TSH can be "normal" and hormone levels can still be too low for you.  Even "high normal" TSH can indicate a problem.

[lanamp]

I was diagnosed with Grave's based on a completely seperate blood test that was only a 'yes or no' test. I'm sorry I do not have access to those labs, it was several years ago with a different dr. But it definately said I have Grave's Disease.

I have never been tested for Hashimoto's. Is it possible to have both Grave's and Hashimoto's? According to my last year and a half TSH tests, I am not swinging back and forth, but have stayed in the 'normal' range. But I sure do not feel normal!!

[lanamp]

I am not on beta-blockers now, or any other medication for any thyroid related issues. I have been in remission for over a year with no medication during that time.

I thought the 'normal' ranges listed with the tests were each based on which lab does the test? EX: a t4 from lab A would have a different range than a t4 from lab B, based on how they preform the testing. I thought that was why they listed their 'normal' ranges along with your actual results. I could be wrong???

I will check with dr regarding gluten when I see him. This is not the first time I've heard that, but I've never looked any further into it since my test result were supposedly 'normal.'

[Barb135]

Forgot to mention that both Graves and Hashimoto's, will usually, eventually, cause the thyroid to "burn out", since the antibodies are attacking healthy tissue and when there is no more  healthy tissue, the thyroid stops producing.

Other than celiac, which is an autoimmune disease, gluten intolerance and autoimmune disease are not necessarily intertwined.  There are many of us with autoimmune disease that are not gluten intolerant. I, personally, have 2 autoimmunes and do not have gluten intolerance.

It's true that for some reason, some labs are changing reference ranges; we haven't exactly figured out why yet.

tgirlnc - have you had an FT3 test done?  If so, what are your levels?  FT3 is the most important of the thyroid hormones, because that's the one the cells actually utilize and it correlates best with symptoms.  

[Barb135]

On what basis were you diagnosed with Graves Disease?  From your post, I gather the diagnosis was based on a completely normal TSH and rapid heart rate?

Have you ever been tested for Hashimoto's Thyroiditis? While Hashimoto's it typically associated with hypothyroidism, early stages can be characterized by periods of hyper swinging back to hypo.  It ultimately ends up with permanent hypo.

I completely agree that you need the FT3 and FT4.  If you've been tested for thyroid antibodies, please post the results and reference ranges.

[tgirlnc]

I am a bit confused by your post..are you just on beta blockers right now?  Gimel is correct regarding the "normal" reference ranges, you want to be in the mid to higher part of the range.  Also, I have just recently learned that some labs (Who knows why?!) have a FT4 range lower than standard- (which is what I just encountered a a major world renouned hospital)..they were medicating based on a reference range of (.5 -1.2)....which the industry standard is actually (.75/.8 - 1.77) for FT4.  This is very important, because my FT4 has been sitting at .7 for the past four months and I was told by my endo that I was in normal range and was fine (even though I have gained weight, dry skin, hair, cold..etc)...I didn't listen and adjusted my medication down (thankfully) on my own...and I am still on the edge of hypo...and I am adjusting my meds down again (now my endo finally agrees I need to).  I have Grave's disease...and trying to get to remission.   Also, two other things to keep in mind that if you have Graves, your thyroid can "burn out"...after remission and your levels can drop...(so definitely get a full work up including your FT4 which is most important and FT3) ..and also if you haven't tried going gluten free...that may be key to some weight loss.  Gluten intolerance and autoimmune disease are intertwined.  Keep us posted on your results.

[lanamp]

Upon further consideration...I have reviewed my supposedly normal 2007 results, I wondered why I was tested at that point but not before. At the time of that 'normal' test, I was experiencing very fast heartrate. 120 while sitting talking, up to 193 if fast walking. This was when the first TSH with Reflex to Free T4 was done. They did not consider me to have a thyroid problem at that time, they just put me on beta blockers indefinately. It was 2009, or 2010, when I was finally diagnosed by another dr at a different clinic. So...it is possible that this level, although considered 'normal' is not actually normal for me? Guess I'll have to make a new appointment with my Endo Dr.

[gimel]

From some past experience with working rotating shifts, I certainly understand how that could cause anyone to be grumpy and exhausted.  LOL  However, just because your TSH is within range does not mean that all is well.  TSH is a pituitary hormone that is supposed to accurately reflect levels of the biologically active thyroid hormones, but it cannot be shown to correlate well with either Free T3 or Free T4, much less with symptoms, which are the most important consideration.

So, it is good that you are going to test your levels of Free T3 and Free T4 (not the same as Total T3 and T4).  Be aware that many doctors use "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the range is adequate.  That is not correct.  The ranges are far too broad for that to be true.  Tests of healthy adults with no known thyroid issues, have shown that a functional range would be more like the upper half of the current ranges for FT3 and FT4.  That is why we hear from so many members that symptom relief required Free T3 in the upper third of its range and Free T4 around the middle of its range.  

I also suggest that, in addition, to the Free T3 and Free T4 tests you should insist on, you should also request to be tested for Vitamin D, B12, ferritin, and a full iron test panel.  Similar to FT3 and FT4, you would like to see those well up in their ranges also.  

When the lab report is available, please get a copy and post results and their reference ranges and members will be glad to help interpret and advise further.

[lanamp]

My last test was called 'TSH with Reflex to Free T4' My result was 1.52 within a normal range of 0.34-5.60. In 2007,well before my thyroid issues began, my result for this test was 1.59. I will have more testing done this coming week and have requested my dr order T3 and T4 in addition to TSH. I am not taking methimazole, or any other medication at this time. I have been off all medications for a year and a half with 'normal' thyroid tests during that time frame also. However....I am exhausted, grumpy, and just generally not feeling great. My dr assures me this is not from thyroid issues, which could be true as I rotate between day and night shifts at work? I will update with new test results later this week.

[gimel]

It sounds like your methimazole dosage may be a bit too high, resulting in low levels of the biologically active thyroid hormones, Free T3 and Free T4.  Even though within the so-called "normal" range, the levels may not be adequate for you, resulting in low metabolism.  Do you have any other symptoms that may be related to being hypothyroid?  Also, please post those test results and their reference ranges shown on the lab report, so that members can comment further.