[ely2009]

#1071275

I was having all the "classic" symptoms when my TSH was normal as well. It wasn’t until a couple of months after when my symptoms persisted and my GP ran the tests again that it dropped just slightly under the "normal" level. If I hadn’t been persistant and hadn’t trusted my body, I probably would’n’t have been tested again so soon and wouldn’t have begun treatment as soon as I did. For me I KNEW it was my body – not my mind. It is probably worth investigating more.

Good luck,
Emily

[cathycnm]

#1071276

David – Oh my, I sometimes cannot believe how little emotional intellegence healthcare providers can show. I am so sorry to hear you were shut down like that. I recently posted that I am at about month 9 after RAI and had been feeling more and more hyper for about 6 weeks. I had my annual at that time and got a TSH. By then, I was a wreck with a capitol W. I cried all through my apt because she said my TSH was normal (had labs a couple days before) and that it was just stress. To make a long story short – eventually my PCP did decide maybe my endo should back off the thyroid a bit – but he did not call back (because the labs were normal). I finally got my dose tweeked down – my last TSH this week was almost the same as it was on the higher dose – but I feel 100% better.

My situation is different from yours – but the same. Because we both got the "your labs are normal, so your symptoms are not real" types of messages. Nothing feels quite so disempowering as not feeling heard or believed.

Your symptoms sound like they warrent more attention – I encourage you to go back again – or find a different doctor. In the mean time, it may help to keep a symptom chart. Take that in to your next appointment with you! That is often a huge help to the physician in diagnosis. Let us know how it goes. And – I agree – there are a whole lot of diseases that I would gladly NOT have compared with Graves. I am glad you do not have Parkinson’s. C

[Hopeful23]

#1071277

i too can second ur story. i went un diagnosed for three years. my levels were in normal range for a year so my dr stopped kooking at my levels right when they showed up. stay proactive and get more than a blood test. ask for an ultra sound and a thyroid uptake scan stat. best of luck. im 24 and been dealing with this for three years cause i didnt know what to ask for or about.

[knitlit]

#1071278

Aurelian,
One book that was very helpful in explaining GD is called "Living With Graves Disease and Hyperthyroidism" by Mary Shomon. There was a check-off list to take to your dr. appointment, this list was a compilation of factors that show a predisposition to GD.

Some of the items on the list were: Do any of your family members have GD? Do any family members have Hashimoto’s? Sjorgrens disease? Does any members of your family have hyperthyroid or hypothyroid history? Any history of autoimmune disorders? Recent traumatic events or illnesses? etc.

I hope you will be able to resolve your health issues soon.

[Aurelian]

#1019377

Though I haven’t been feeling overly well for some time now, the rapidly thinning hair and hand tremor that developed over the last few months finally drove me to scour the internet. While it was Parksinsons that I originally feared, it was Hyperthyroidism and Graves Disease that I found.

I was truly shocked (and somewhat excited) that Hyperthyroidism could not only explain my most recent problems (the hair loss and hand tremor), but a collection of other maladies that have plagued me for much longer: My near-constant upset stomach, the unexplainable depression and anxiety that has been weighing on my shoulders, my inability to concentrate on anything I used to truly enjoy, the painful headaches behind my eyes, the periodic eye twitching, the growing dissimilarity in appearance between my eyes… not to mention the fact that I am very much underweight for my height (despite eating literally twice as much as anyone I have ever met!).

It seemed a dream come true, to be perfectly honest– every single complaint I have ever had about myself could be explained by a treatable disease? I must confess I found myself hoping for the diagnosis.

Unfortunately, that diagnosis hasn’t come. After waiting three weeks to finally get into a Doctor and be tested, I’ve been told that my TSH levels "looked good," and was dismissed. It is the nonchalance with which the results were discussed that I am finding so frustrating. There were no alternatives offered, nor any discussion of other tests. And, to be perfectly honest, even I can see how these symptoms could POTENTIALLY be explained by an overly anxious or stressed personality.

I am posting here because I am curious if anyone else had similar frustrations at the beginning of their battle against Graves Disease. Is the TSH test reliable and final? Can I confidently conclude that I do not have Graves Disease or Hyperthyroidism and that I really need to take a hard, introspective look at my current state of mind? Any advice on how I should proceed from here would be much appreciated.

Thanks,
David (22 year old male, for what it is worth relative to the symptoms and disease)

[Ski]

#1071279

Hi Aurelian,

If you’ve had thyroid blood tests run prior to this, when you know you were healthy, it may be helpful to know what your TSH level was at that time. A significant change (from top of the normal range to the bottom of the range, for instance) would probably bring some interest from the doctor. Unfortunately, not everyone has those types of historical results. Did you receive a copy of your most recent test? If so, you can at least know for yourself whether the TSH falls in the very bottom of the normal range, which could indicate high-ish thyroid hormone levels, since TSH has an inverse relationship to T4 (thyroid hormone).

One quick solution would be to ask the doctor to test your full thyroid panel, not just TSH. TSH is pretty good as a test result, and for most people it is truly the golden level to test. It is the thyroid stimulating hormone that comes from the pituitary, and it is released in proportion to the levels of thyroid hormone the pituitary senses in the bloodstream over a few weeks’ time. If your thyroid hormone levels are fluctuating rapidly, or have just begun to travel in a certain direction, the TSH may not have "caught up" quite yet, so it’s possible the T4 result could provide some perspective.

I would concur that a scan/uptake result would be helpful, but the first thing it sounds like you must do is convince your doctor that it’s not only a possibility, but a probability, that Graves’ is what they’ll find. An uptake/scan is not something they’re likely to order "just because." There is a blood test for Graves’ antibodies, which may also be helpful. The complication with that blood test is that you can have a negative result (no antibodies) even though you truly have Graves’, because the antibodies wax and wane for various reasons (no one has a handle on those, exactly). If you get a POSITIVE result for Graves’ antibodies, that’s conclusive. A negative result is not necessarily conclusive.

This can be SO frustrating, I know! There is still the possibility that it’s not Graves’, so don’t let the doctor sit back and say "done." You are having severe symptoms, and you need relief. The investigation doesn’t stop just because they didn’t find what they thought they would.

Do let us know how things are going!!

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