[Kalonakini]

#1018775

Hi, all. I haven’t posted for years but felt I had to send this out since I’ve never heard of it until it happened to me.

I had RAI about 10 years ago and have been stable on synthroid after about the normal 2 years of playing around with dosages. My Graves was diagnosed when I went into a-fib (atrial fibulation where the top chambers of the heart just quiver instead of pumping), necessitating RAI as the quickest solution to a potentially dangerous situation. Everything fixed – life goes on. Believe it or not, you hardly ever think of Graves after a few years – you just take your pills.

Well, about 6 months ago, I was real short of breath all night so I went into the ER the next morning. I’ll make a long story short – the end result was that I was in a-fib again and my thryoid levels were almost the same as they were a decade ago. After assuring everyone from the janitor to the doctor that I really, really didn’t od on synthroid, I was slapped into the telemetry unit at the hospital for 3 days and taken off all synthroid.

They checked my thyroid and it was still dead as could be. They checked this, they checked that, they woke me up to give me a sleeping pill and yelled at me when I left the floor because I was going stir crazy. When I was discharged, I was given a thousand pills and made to take so many blood tests until I strongly suggested the lab just put me on the payroll. And through all this, my thyroid levels were only falling slowly but with no synthroid, they should have been falling like a rock. Why? No one had an answer.

Finally, the levels went to normal – and far beyond until I was hypo because everyone was afraid to give me synthroid for fear I would go into a-fib again. When my hair started falling out and I could hardly function, I had the cardiologist tell all the doctors that he promised I wouldn’t die on thier shifts if I was given synthroid (or maybe it was because I told them all either they give it to me now or I start taking my own supply at home).

Finally, the cardiologist came up with an answer to the why? His explanation: The thyroid is not the only gland in the body that produces thyroid hormones – it’s just the biggest. Graves is not cured by any treatment, it is just controlled. This disease will continue to run it’s course through the years. Eventually, all the glands producing thyroid hormone will naturally burn out from the Graves. However, before that happens, there is always a possibility of a "flare up" of the Graves where the thyroid hormones are produced in much too great supply – which, of course, is the simple definition of Graves. Combine that with the synthroid and – voila – you get to where I was.

In hindsight, I can see the symptoms – the weight loss (that was nice), the hands shaking, the appetite, the need for less sleep, the irritability, the heat intolerance – all those things.

Do I want to scare you? Absolutely not. Is this common? I am lead to believe it is not. But this forum is for information and I believe what happened to me is important information for anyone with Graves. Not just because it’s possible but because I have to take some responsibility for this getting to the hospitization stage. I became so used to having Graves, that I never thought of it. That was a mistake. We have a disease that we will have for years and years. We can’t let this disease run our lives or even become such an important part of our lives that we focus on it constantly. However, our health and the management of this disease is first and foremost our responsibility. We know our bodies better than any doctor and we learn where our thyroid levels need to be. This means we also have the responsiblity to keep track of where our bodies are and insist on more than a tsh test every 6 months if we’re feeling what we shouldn’t feel. I live with this disease – I’ve been hyper and hypo – I know the symptoms and I turned a blind eye to what was slapping me upside the head.

I’m fine now, my hair’s grown back, my body is telling me it’s almost where it needs to be (I’m giving my poor doc a break before I tell them we’re raising the synthroid just a tad), I can sleep and eat and – well, ok, so the weight came back with a vengence when I went hypo but some of it’s come off so that’s a good thing.

Hope you all had a Happy Holiday and a great New Year.

Sharon

[Ski]

#1067011

I’ve learned a lot about Graves’ Disease in the past 10 years, but this is something I’ve never heard, not at a conference, not in any kind of literature. If you were taking too much Synthroid, you’d go hyperthyroid, whether your thyroid is functioning or not. Too much is too much, and it would take weeks before your thyroid hormone levels changed dramatically, even if you stopped Synthroid completely. If there were other glands in the body producing thyroid hormone, we’d have heard of it, but I will send a note to make sure our medical advisor is asked about this specifically, and we’ll post the answer.

Our need for thyroid hormone changes over the course of our lives, and so you may have just gone a little more hyper all the time until you were toxic again. I hesitate to say that other glands produce thyroid hormone without having some sort of evidence.

I’m so glad you’re feeling better now!

[npatterson]

#1067012

Dear Sharon,

Like Ski, I have never heard of this. A copy of your post has gone to several doctors that act as referral sources for us.

The sole function of the thyroid is to produce thyroid hormone. Thyroid hormone affects MULTIPLE organ, tissues and functions. I have looked at several of the reference books I have on hand, and still can’t find anything to corraborate the statement of the cardiologist.

It is good that you are finally better, and we will soon have a more professional/expert answer.

[Ski]

#1067013

Here are two responses from members of our medical board of advisors on this topic:

"This is absolutely untrue. There are rare patients with ‘Struma ovarii’: thyroid hormone in an ovarian tumor. But beyond that (and rare patients with metastatic follicular thyroid cancer), the thyroid gland itself is the only source of thyroid hormone. I can’t speculate about what happened to her specifically other than residual thyroid tissue or an error in the prescription or intentional over replacement."

and the other:

"This lady was simply taking too much Synthroid/thyroid hormone and her problem was solved by reducing her dosage I assume.

And, yes, I can’t find the reference but I think there is an article out there somewhere about a small cell CA of the lung producing TSH causing hyperthyroidism. Not a problem this person has, thank Gawd. They don’t do very well.

And, yes, Graves’ can come back despite the treatment – surgery, drugs and/or RAI. I’ve seen it all. The last lady I recall had near-total thyroidectomy and was stable on Synthroid for 20 years. She developed hyper symptoms and stopping Synthroid didn’t help. Scan and uptake showed the little bit of thyroid left after surgery had decided to get hot. Pretty cool. I gave her some RAI and solved the problem, maybe."

I do hope that helps.

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