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Well said Sharon.
I think that we can all learn something from you. Never say “Die”!
I hope the health of all is good. -Charleen (a women of few words, huh?)
Just as a quick update: I’ve spoken to my optho and there will be no surgery in the near future. Although I do have cataracts, my vision is not considered “medical poor” enough to warrant the surgery (and it will be surgery – hopefully stitchless, Jake). I’ll have to wait for the appt with the optometrist to see what adjustments we can do to help my vision until then. I had a suggestion to have “computer” glasses made using some of my old frames and placing just the bifocal lense prescription in them – I can put one pair by the computer here at home and one pair at work. This may actually work for a while. I will have to wait for the MRI to see what the TED is doing – let’s hope that is an exercise is futility. I need to get that blood work done to see what my levels are doing. When all the tests are in, I’ll make an appt with my endo and we’ll have a long talk (I bet that’s why he went on his long vacation now – to gather the strength to deal with me!)
But, guess what, Warriors!?! I’m alright with this. Am I a happy camper about dealing with these conditions – of course not. Will it be O.K.? Hope so. Will I be O.K.? Absolutely. The “process” I need to go through is completed. I’ve faced the fears, control issues, shattered dreams (and smokey illusions that I create to support those dreams) and the parts of the past that are involved – I’ve cried, yelled, screamed, cried, tried to change reality, sulked, cried, pouted and vomited emotions (still waiting for the dry cleaning bills).
I will be scared, sad, mad, angry, hurt and confused in the future as I journey through this lesson – but these emotions will be based on the immediate reality – and they will no longer have the ability to take the joy of the world and my life away. And I am grateful.
You have been there for me while I struggle. You have supported, cared, loved, shared and given *hugs* when words will not suffice. And I am grateful.
“The path we choose has the trials, hardships and pleasures on it already. They are just waiting to be encountered. It is how you treat what you find along the way that determines the outcome. This is the way of the warrior. It is called the Warrior Spirit.” [Home Page – Warrior]
This is the miracle. And you all are miracle workers. You are all Warriors. And I am grateful.
Sharon
Hello everyone, I know it’s been a while since I posted but I’ve been struggling with my body. I’m sure we can all relate to that. I recently had Oribital Decompression and it’s not going as well as they had expected. So they raised my prednisone and put me on an antibotic. Let’s see if this helps. But here is my miracle. I had my Total Thyroidectomy done in June of this year. They started me off right away with Synthroid but after the first blood work took me off all thyroid medicines. My last blood work on had two test on it, that’s all she ordered, they were TSH was 0.000 range 0.4 – 4.0 and FT4 was 1.65 with a range of 0.80 – 1.90. So my doctor told me last week that my thyroid is fine, working great (mind you thyroid is supposedly gone) and there is no reason for me to see her again. The only problem she foresees is my thyroid growing back so much that I’ll have to go through all of this again. That everyone I need done can be taken care of through my Internist. Now I still have the insomnia, the muscles pains, the hair loss, the memory loss, can’t walk much or do anything for that matter and well my eyes are in a whole other chapter of my life. Does anyone here think it to be WISE that I stop seing my Endo doctor or should I find another one. Personally, I think shes NUTS. Please Help. Thank you and I hope you all had a nice Holiday.
Diane
Hi Diane,
Wow, you have been (and are going) through a lot! Also, as you are aware, obviously your total thyroidectomy wasn’t “total” at all, since you’re getting a normal amount of thyroid hormone with the remnant of thyroid tissue following surgery. (It’s impossible for the surgeon to get all of the thyroid in a “total” thyroidectomy.)
The symptoms you’re having are difficult to sort out the cause of, since you are on Prednisone. Insomnia can definitely be caused by Prednisone—I can attest to that. Hair loss is a symptom I experienced with any CHANGE of thyroid levels, however small. It stopped once I got on a stable dose of thyroid replacement, about five years following my RAI. The muscle pains and memory problems for me also went along with not having my levels stable, but Prednisone can contribute to many of the problems you describe, as well.
When your TSH becomes detectable again and rises, it will help your doctor determine whether your Free T4 is truly right for you. It is in the normal range, but your TSH will eventually rise, giving you a better indication what that Free T4 is for YOU. When it does, it may indicate it’s as normal as it now appears, or it could be a bit high at—say—6.5, meaning most likely that you were subclinically hypothyroid and your doctor might decide to put you on thyroid replacement hormone after all.
I am really puzzled as to why your endocrinologist would release you from care while your TSH is still suppressed, since it’s impossible to determine for certain whether your Free T4 is truly appropriate for you until your TSH rises.
If you don’t understand why your TSH is still so low, it’s not because you’re still hyperthyroid, as obviously your thyroid has been removed and your doctor told you your thyroid levels are normal.
Many people with Graves’ Disease (but not most other kinds of hyperthyroidism) have a TSH that remains low for possibly many months, even when their thyroid levels are normal. Doctors used to think the hypothalamus-pituitary mechanism had “gone to sleep”, but now have good cause to believe that when people have high levels of thyroid stimulating antibodies, these antibodies act like TSH and the body stops its own production of TSH until these antibodies decline in number.
Now that you’ve had most of your thyroid removed there’s less thyroid tissue for your immune system to make antibodies to. As the old antibodies are depleted, your hypothalamus-pituitary axis will begin functioning more normally and your TSH will rise in response to your body’s need for thyroid hormone.
The danger of releasing you to the care of an internist is that not all doctors are familiar with the reasons for a suppressed TSH and might think you are still hyperthyroid. I’ve heard of this happening to patients. In any case, if you’re not certain that you trust the judgement of your endocrinologist, I suggest you get a second opinion. Most people with Graves’ remain in the care of an endocrinologist long-term, and this is still early for you. It’s important for the management of your eye disease that your thyroid levels are optimum, so I hope you won’t take chances with this.
Best wishes to you.
Dianne W
Online FacilitatorJust a bit of information that might help you right now. Endocrine glands are bits of tissue that release their hormones directly into the blood stream. Thus, any bits and pieces of thyroid tissue, anywhere in your body, no matter how small, may be functioning and providing thyroid hormone. This is one reason why thyroid cancer patients, who have thyroidectomies AND RAI treatments, go back preriodically to have even more RAI to make sure that every last bit of thyroid tissue has been eliminated.
When we have our thyroidectomies (or our RAI treatments) we patients assume that the whole thyroid, every last bit of thyroid tissue, has been eliminated. It isn’t usually true. What we hope will happen in our case, is that enough tissue is eliminated to make hyperthyroidism a thing of the past.
I actually have no knowledge about whether thyroid tissue can grow back or not. But antibody action can often, most definitely, cause whatever tissue we have to produce an overabundance of thyroid hormone. Or too little, over time. So, you must make sure that your thyroid levels are monitored at reasonable intervals. What is reasonable? Talk with your doctor. And make sure that it happens at least once a year.
It is definitely possible for a thyroidectomy to leave us with enough thyroid tissue to render is “normal” again. It is also possible for preliminary blood work to change, and change drastically, over time. I had RAI. After a few months on increasingly lower doses of replacement hormone, I was declared “euthroid.” (i.e. “normal” levels of thyroid hormone were being produced.) A few months later, I was told that I had to go back onto replacement hormone. Levels of replacement hormone increased over time. I suppose that must sound like “bad news” to you, but in truth, once I got through my RAI I never again felt as bad as I had while I was hyperthyroid, and for that I was deeply grateful, regardless of having to change replacement hormone doses.
I hope you are feeling well, and that you continue to feel better than when you were ill with too much thyroid hormone.
Bobbi — NGDF Online Facilitator
Dear Grneyedlady,
It was good to hear from you. Glad you were able to have the orbital decompression surgery, but it soundslike you weren’t totally pleased with the results. I had orbital radiation on both eyes this past summer and this seems to have halped my eyes, but my hyperactive thyroid is still a problem. I’m now scheduled to have a thyroidectomy on January 8, 2008, and must admit to being anxious re this because of my age of 67 and a general fear that some complication will occur. How did your thyroid surgery go and was your voice affected? How long were your hospitalized? Did you gain weight after the surgey because of now being hypothyroid. I would be most interested in learning of your surgical experience. I will try to post my E-mail address so you could respond directly to that address if you wanted to.
Thanks,
Nina -
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