[tiredofitall]

#1060390

I have been lurking around this forum for years and have never found anything close to what I am experiencing, so I thought I might as well register and ask the question.

I was diagnosed with Graves’ Disease 16 years ago after a trip to the ER with pneumonia and AFib due to being super-hyperthyroid. I was given RAI within days of that.
Within a week after RAI, I was sick and have never, ever felt well since then.

I began sleeping 18 hours a day and gained 60lbs quickly. I just could not get out of bed for more than a few hours at a time. I have often said that on my 50th birthday, I turned 70. That pretty much says it. Now I am 66 and feel like 86 (or 96?).

Basically I have tried everything: supplements, exercise, T3, etc and I have only gotten worse. My life has been totally destroyed, since I can not plan to do anything any more, because from hour to hour I never know how I will feel. I have no family or friends support anymore, because they are sick of me always feeling so bad. I am estranged from everyone.

I have tried several different doctors and they all end up saying the same thing. They say my labs are in range, so I should feel fine and there is nothing else for them to do. (So I must be nuts! Right?)

I did have one doctor say years ago, “we must be missing something”, but that never went any farther than that.

The bottom line: I feel to this day exactly how I felt 2 weeks after RAI and before I was started on T4.

Where do I turn? Is Graves just a small part of what’s wrong with me? What else could it be? If my Thyroid labs really are in a normal range and I still feel like this, does that indicate that looking at “Graves'” is not where I should be looking?

Thanks in advance for any input.

[Kimberly]

#1182363

Hello and welcome – we are fellow patients here, not doctors, but it certainly seems like the doctor who said they were “missing something” is on the right track! If that doc is still on your team, perhaps you can push that individual for more assistance?

Graves’ disease is an autoimmune condition – and those of us with one autoimmune disease are at higher risk for a second one. So perhaps that would be a good place to start looking. The more specific that you can be with symptoms, the better.

Hopefully, your doctor is testing Free T4 and T3 in addition to TSH. The “normal” range for thyroid labs is fairly wide, and some patients do feel their best at a certain spot in the range. But it sounds like what you are experiencing is so severe, that perhaps looking outside the thyroid issues would be most helpful.

That’s awful that you’ve already given up 16 years of quality of life – hopefully, you can connect with the right physician who can help you put the puzzle pieces together and figure out how to get you some relief!

[JHinrichsen]

#1182364

I am 58 and in your same shoes. I regret the choice of RAI because my hormones have never recovered from the onset of Graves. I was so desperate to feel better after the diagnosis that I would have done anything to try to feel better. I have never had a weight problem in the past but for a time it seemed hopeless. However it isn’t. I now have a doctor willing to start testing hormone balances and figuring out foods that will quit working against me. Menopause is not helping but the autoimmune condition is complicating things. I have just been diagnosed with rheumatoid arthritis, another autoimmune, tests are pending for gluten and insulin levels that are also predicted to be out of balance. All the dieting in world will not help until you learn more about the foods and do not concentrate on calories in – calories out. My point is that is isn’t directly the Graves, the thyroid problem, it is very likely the autoimmune condition did not stop at the thyroid gland. And remember the thyroid gland helps control and trigger our other hormones. Find a doctor that will help you figure things out. My doctor has also requested a physical therapy session that does the testing for how I burn calories and fat. Again he suspects wheat/gluten and insulin are turning quickly into sugars and storing fat making all the exercise I do to have little effect. What a struggle we have. 😆

[tiredofitall]

#1182365

Thanks for the advice.
I appreciate all your input.

Without going into every detail, I have, at one time or the other, tried just about everything suggested in this forum with no improvement what-so-ever.

Several times, I have changed my Synthroid dosage to try to find a sweet spot. Tried adding Cytomel. B12 and B6 supplements. Strict diet. Exercise.
I have tried at least a dozen doctors and they all say my T4, T3 and TSH are in range, to come back in 6 months and that’s the end of it. Not one of them has been at all interested in exploring the matter past my 15 minute appointment time limit, even when I asked them too. It seems I can not make any of them understand just how bad I feel all the time. They just don’t hear what I am saying.

Yes, I agree that there is more going on here than Graves’, but since it all started with Graves’ (RAI), that’s the point where every conversation gets started.

I just find it really strange that one day I felt just fine and a week later (after RAI) I could barely get out of bed and things have never gotten any better than that.

I am still hoping that someone else has experienced this and can point me in the right direction. That’s why I decided to post in this forum.

Thanks again

[Raspberry]

#1182366

I am so sorry you’ve been through so much difficulty since the RAI. I don’t know if I have any advice that would help but I’ll throw a few thoughts out there. You said that of all the doctors you’ve seen none of them would explore the issue past 15 minutes. That tells me that even though you’ve seen so many, you haven’t even seen one doctor yet that’s taken a real investigative approach. Maybe it would be worthwhile to try to track down a different type of doctor – there are organizations for holistic and integrative medicine that list doctor members. Osteopaths are supposed to sometimes have a different take than md’s. If you are limited by the town you live in it might even be worth it to travel to see someone even though I know that would be difficult working with little energy. I wish you all the best.

[Mickee]

#1182367

I had RAI aa year ago this month & it almost killed me. It did nothing to reduce my thyroid levels, I had hives, lost of taste (could not taste anything), more rapid weight loss. Ended up in hospital for anorexia. Lost alot of hair, very weak, severe arthritis, I did not have before.
There is no way I would reccomend RAI to anyone.
I now take Avemar live enzymes, Live pro-biotics, Natural Vitamins ect. and am finally starting to feel better again. I highly reccomend the natural approach. I too took Methimazole, Propranalol ect. and it did not work.

[Kimberly]

#1182368

Thanks for sharing your story – I’m sorry that you had such a terrible experience with RAI. Hopefully, you are still working with a doctor to monitor thyroid levels and make sure that hyperthyroidism doesn’t recur. We recommend the three conventional treatment options to patients, as there aren’t any alternative methods at this time that have been proven to be both safe and effective.

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