[Ski]

#1072866

If you have already destroyed your thyroid, that ship has sailed. Discontinuing thyroid hormone replacement will be fatal. Thyroid hormone replacement is not being "on medication" the rest of your life, it’s giving your body the thyroid hormone that your healthy thyroid would have produced. Without it, your body will have nothing with which to function, and body systems will shut down.

[QueenMe]

#1072867

I’m banking on the fact that my thyroid wasn’t all the way destroyed with the RAI. I understand the consequences of untreated hypothyroidism. However, I want to give my body a chance to heal itself.

also, of course it’s being on medication for the rest of your life. It’s synthetic hormone. call it replacement, or hormone, or whatever it’s still a drug. It’s still a pill to take daily for ever and ever and I’m going to exhaust every possible solution before I go back to being dependent on it.

[QueenMe]

#1072868

here’s my beef with thyroid replacement — it’s a steady dose, which is NOTHING like what the body does naturally — there is no room for the natural fluctuations that are necessary for proper body functioning. I hate that.

[Ski]

#1072869

It is synthetic hormone, but it is chemically identical to the hormone your thyroid would produce. In addition to that, we take T4, which is not the active form of thyroid hormone. The body converts T4 to T3 when we need it, so indeed, we do have access to "more" as our needs change. The goal is to achieve a steady blood level of T4 for the body to access as necessary.

It is not likely that your thyroid is making enough thyroid hormone to sustain you, or else you would not have gone hypo and needed hormone replacement.

I’m sorry to sound so negative about this, and I’m sorry you were rushed into RAI. It’s one of the things we constantly battle here, because patients are routinely deprived of their right to choose. The fact is that you are past that point. There is no more possibility to "heal" the thyroid. It’s gone. It’s the same thing as if you had removed it surgically. There’s no going back to heal it any longer.

[QueenMe]

#1019614

Hello.

Briefly, I had severe Graves (T3 1300) and I was pressured into RAI. I know now that that was a huge mistake. As people have said, GD is an autoimmune disorder, not a thyroid disorder. The way western medicine treats it is like stopping a burglar by burning down the house he’s robbing. If I had done more research before RAI, I would have looked more into therapies like lemon balm, which actually inhibits the autoantibody, rather than destroying the thyroid.

Well now I’m determined to rectify this mistake. I am not taking drugs for the rest of my life. I’m sure I still have some thyroid function left, so I am going to work on strenghtening what I have.

Anyone done anything like this? I’d love to find anyone else who feels like I do.

[QueenMe]

#1072870

it’s not chemically identical. if it were, the body would digest it (as thyroxine is a peptide hormone) before it ever reached the bloodstream. hence "levo"thyroxine.

it might not be likely that my thyroid is making enough hormone to sustain me right now but I have faith that it will regenerate. After all, there was some tissue left. There is enough there so that I’m not on 200 mcg of drug. I might have a higher than normal TSH for a while but I am going to do more research on regenerative capacity. There is still some tissue there, especially if you haven’t been treated too aggressively with RAI. If not, why would some people’s GD come back?

I’ll keep you posted on my progress.

[elf]

#1072871

QueenMe, what dosage of RA iodine did you take?

[QueenMe]

#1072872

I have to look it up. It was 4 years ago. I have the file at home though I think.

[DianneW]

#1072873

QueenMe, research shows that regardless of what dose of RAI people take, over time the thyroid will continue to die out until everyone who had it will be hypothyroid. The cells that weren’t destroyed have been damaged with a premature-aging effect and won’t live a normal life-span.

If you allow yourself to remain hypothyroid for a long period of time then you may have damage to your heart and hardening of the arteries. This won’t be reversible if you allow it to continue.

I strongly advise you against what you’re thinking of. There is no evidence it has any chance to work for you.

[QueenMe]

#1072874

well, in 80 percent of people that may be the case. in the other 20% no. ( Clin Endocrinol (Oxf). 2004 Nov;61(5):641-8 . So why is nobody looking at the 20% and figuring out how to make more people like them?

I have a full understanding of the risks of hypothyroidism. being hypothyroid makes me miserable anyway, so I won’t let it get to that point. I am logical enough to know if my self-healing doesn’t work, that I will need to go back on medication. But I will give my body a chance to do so.

But the body has an incredible way of healing itself. Granted, in subacute thryoiditis there is no radioactive poison involved. However, DNA damage repair does occur, and it can be encouraged. By treating hypothyroidism with medication, you suppress TSH levels — so how are you ever giving your body a chance to naturally stimulate what might be left of the thyroid gland?

[DianneW]

#1072875

In that study the average dose was 7 milicuries, which is small, and the actual number that wasn’t hypothyroid 25 years later was 18%. These days most people receive larger doses. Have you checked to see what dose you received?

Besides the damage from the RAI most of us have ongoing damage from the thyroid antibodies. A large percentage of people with GD become hypothyroid in time even if they haven’t had RAI as a treatment. So while you’re correct that you most likely have some thyroid tissue remaining (most of us do), if you had enough to sustain you without replacement hormone, your TSH would not have risen to begin with. I can’t imagine on what basis you think it’s even possible for the thyroid to regenerate at this point. This logic is much like suggesting a diabetic could regenerate his pancreas if he stopped taking insulin.

I have a personal story about this. Last year one of my cousins didn’t come to the family picnic. Her sisters told me that she had been diagnosed with bipolar disorder. I questioned them about her because I’d long suspected her of having Graves’ Disease because of her eyes. I’d even talked to her about her eyes at one of the picnics. They told me she’d had surgery on her eyes a few years ago to get rid of the bags around them (apparently after I’d talked with her).

To make a long story short, I questioned them about whether she’d ever had her thyroid levels tested. They weren’t sure, but told me that about 15 years prior she’d taken some kind of radioactive pill for her thyroid. I asked if she was taking any kind of thyroid replacement hormone, and they said she wasn’t. So I urged them to get her in for a thyroid test right away. The results came back and she was severely hypothyroid. Apparently she had not understood when she had RAI that she had to have her thyroid levels monitored. She thought she was cured of her thyroid problem and that was it.

In the meantime, she has developed a severe case of high blood pressure and heart disease, and she’s only 55. She had lost her job because of poor mental/emotional function. Her thyroid had apparently been okay for a number of years before gradually becoming hypothyroid, but at least in her case it didn’t regenerate by not taking replacement hormone.

So you can see why this idea doesn’t appear like a good one to me. It’s your life and your body of course.

[QueenMe]

#1072876

interesting points Diane. I don’t remember what my dose was, and my endo has since retired. I will try to track them down. I do remember it being fairly small.

Like another post said, thyroid antibodies can be controlled by exploiting the psychoneuroendocrine axis, which I have done. So I have no doubt that my TSI are low.

I understand your point about the pancreas, but in type II diabetes, many times insulin can be avoided if the disease is caught early enough — it can be managed with diet and exercise. but after the point at which many people have totally burned their pancreases out, then they need insulin. and the more I think about it, the pancreas doesn’t have so much of a feedback mechanism as the thyroid does — i.e. what triggers a rise in insulin is glucose, not an endogenous hormone like TSH.

like i said earlier, my basis for thinking thyroid regeneration is possible is that it regenerates after thyroiditis, in which portions of it are destroyed. there is also evidence of regeneration in 3d collagen matrices.

i understand that I probably sound crazy, and that this wasn’t the forum to talk about my plan. But thank you all for your input.

[DianneW]

#1072877

Like another post said, thyroid antibodies can be controlled by exploiting the psychoneuroendocrine axis, which I have done. So I have no doubt that my TSI are low.

Controlled? How nice that would be!! Certainly there’s evidence that in some cases influence can be exerted, but "control" is a very strong word. I think these distinctions are important.

All the best to you.

[Author]

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