[Anonymous]

#1031083

Hello, I’m a 45 y.o. male with most of the classic signs of Graves, but labwork has been normal since one mildly elevated autoimmune thyroid test about 2 yrs ago. I can’t walk too well anymore (myopathy around knees) and my eyes are a mess (blurry, dry, painful in morning, etc…). I want to stay functional and keep my job, but it seems I can’t get treatment because my TSH, T3 and T4 are normal. Also, MRI and thyroid ultrasound came back normal (thyroid was mildly enlarged.) Does having all the symptoms and OK lab work sound familiar to anyone out there? Is this common to early onset?
Thanks,
Rick

[Anonymous]

#1107560

Graves is usually diagnosed after having a thyroid uptake scan or maybe thyroid antibody test. It doesn’t sound like you had either one of those. The specific thyroid antibody test for Grave’s is TSI – thryoid stimulating immunoglobulins. There are other antibody tests which lead more toward a diagnosis of Hashimoto’s thyroiditis.

Have you visited an opthalmologist about your eyes? It is possible to have TED (thyroid eye disease) and not hyperthyroidism.

[Anonymous]

#1107561

First off — my best wishes to you regarding the joint pain, etc. That’s tough and annoying to learn to live with. I’m glad you’re asking questions (what is this? etc.).

I can’t point to any empirical evidence other than looking back at the progression of *very* suspicious symptoms, but I seem to have gone through something similiar to you.

I’d been losing range of motion, especially in my knees and legs over the past 7-8 years. I was blaming it on teaching all day (all day standing). I got to the point summer ’01 where it was painfully difficult to step in and out of the bath tub. I noticed the changes (even in my lower back) over these past years because I used to sit zen lotus style (legs crossed) and slowly over the years, despite lots of stretching, I lost flexibility anyway. I now use a 1 foot tall bench. It appears that the antibodies that are the culprits of Graves were attacking my joints long before my thyroid levels finally flared.

The trigger for my thyroid levels looks like it was a viral infection winter of ’01/’02. By Aug ’02, I was miserably heat intolerant, and by Sept. ’02 I started to have heavy tremors (I had noticed the light tremors a couple years earlier – a warning sign).

So, can you have Graves without the increase in thyroid? It appears that the medical community says yes, although there doesn’t seems to much of any research done in this area.

BTW, there are other reasons for what you describe, so I wouldn’t assume that Graves is the problem without getting the bloodtest to confirm the presence of the culprit antibodies. I’d be persistent with my doctor in finding the reason for your pain.

Best wishes.

DebbyG

[Anonymous]

#1107562

Hi!
OK labwork depends… Do you have your actual test results, or is your doctor just saying they’re ok. My doctor said mine were “confusing” and then I was told the uptake & scan was “normal” when in fact it was twice normal. I simply went to another doctor who told me this, and got me on the right track. Good luck! Definitely try a second opinion.

Kirsten

[Anonymous]

#1107563

I really need some help. I was diagnosed with graves about 8 months ago. I had the 131 about 7 months ago. My thyroid has been proven to be all over the board, it flucuates constantly. It has not evened out and I am not sure if it ever will. I also do not feel as if I am getting all the help I need from my Dr. I go in and get my blood tested from month to month and only when I tell doc that I am feeling like it is low will she up it. I am on Synthroid at 125 mg now and have been for the last 60 days. For the 60 days before that it was 100mg. My TSH tested at 2.14 60 days ago, 0.16 30 days ago and am waiting for new results now. But, I feel like it is really low right now. I am thinking that I do better with it at the top of the range. Can anyone let me know what the ‘normal’ range is and if anyone has ever experienced this?

[Anonymous]

#1107564

Hi LeiLaniV,

The normal range for thyroid hormone is vast. It also differs from lab to lab (different processes derive different numbers as levels), so you need to take a look at your actual test results. You have a right to see them, and to get a copy of them to keep. Just ask the doctor’s office to get you copies. They will indicate what their lab’s range of normal is, so you can see where you fall (high-normal, mid-normal, low-normal).

Seven months after RAI, it is not that unusual for thyroid hormone levels still to be “bouncing around.” Your body has been through an incredible assault of hyperthyroidism, your thyroid has been damaged by the RAI, and now your body is trying to find its own balance, with the help of your replacement hormone.

Hang in there, there’s a light at the end of the tunnel – and it’s NOT an oncoming train.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1107565

Hi there. I am two years post RAI, and have been at normal levels for about six months thru the winter, but now am experiencing hyperthyroidism again. I was on 175 mcgs of synthyriod, then 150, now 125. I go to the doctor tomorrow. I still don’t feel like I want to feel. I am a little discouraged by now. But, I know, there’s a light at the end of the tunnel. Good luck to you.

Annette

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