[Bobbi]

in reply to: Dependent on Hormone Pills #1174122

One thing about the “information” that the medical professionals give us when we are entering into a procedure is to list THE most conservative instructions, and THE broadest range of negative outcomes. It is called “informed consent” and it is intended to cover their rear ends in the event of an adverse situation occurring. When I had surgery a few years ago, one of the things listed was “death.” The thing you need to do is QUESTION the medical professionals. “How often does death occur during a hysterectomy” for example.

If you opt for the surgical removal of your thyroid you can make a safe bet that “death” will in fact be one of the possible outcomes. But it doesn’t happen that often. But it would help to find out how often it does happen, so that you can make a well-thought-out judgment. So, if you want RAI (which I don’t hear you saying that you do, but if you did), then you need to ask the person issuing the guidance if that guidance is “general” (i.e. including thyroid cancer patients who get whopping doses of RAI) or specific to your level of treatment. If the recommendations to avoid your husband are because the level of radiation you will be emitting is seriously dangerous, or if this is simply precautionary to avoid him getting ANY exposure to unnecessary radiation. Whatever the treatment option is, we need to ask objective, appropriate questions and get thoughtful, factual responses.

I hope you are enjoying your weekend.

[Bobbi]

in reply to: Dependent on Hormone Pills #1174117

I realize that we live in uncertain times economically, and many folks are feeling insecure. But to think in terms of “I can live longer hyperthyroid if everything collapses” is extreme. Again, it’s a way of making a decision based on fears or guesses rather than on realities. Try to get factual information to make your decision. And try to relegate irrational fears to a back burner, because the bottom line is that the quality of your life depends upon you making a GOOD choice for yourself. That choice can be antithyroid meds OR replacement hormone, depending upon your situation.

If cost is an issue, talk with your pharmacist to compare the costs of antithyroid drugs vs replacement hormone. Based on health plans, pharmacy involved, etc., the costs can vary between me and you, so checking your own resources could be helpful.

[Bobbi]

in reply to: MY TERRIBLE TIME WITH TED-a review #1174101

Definitely hugs. Big. Bear. Hugs. And best wishes for a totally successful surgery next week.

[Bobbi]

in reply to: Graves with some Hypo symptoms… #1174106

And, one additional comment. Just because we have one disease, it does not mean that forever any symptom that we have is due to that disease. It is possible to turn up with some other problem(s). Maybe not “fair,” but definitely the way life goes.

[Bobbi]

in reply to: Dependent on Hormone Pills #1174113

Here’s some thoughts that might help:

It isn’t just Graves patients who use replacement hormone . People who have Hashimoto’s thyroiditis use it; people who have had thyroid cancer and had their thyroids removed use it; people who have lost sufficient thyroid function (about 10% of aging adults just to use that demographic) use it. Compare that then to Tapazole, which is only used for hyperthyroid patients. The “market” is obviously bigger for replacement hormone, hence the likelihood of a pharmacy giant stopping it due to limited market is not great.

I think whether or not you stay on the antithyroid drugs or remove your thyroid and go on replacement needs to be decided on realities, not fears.

[Bobbi]

in reply to: Migraines #1174020

I used to get hormone related migraines, and they did go away once I was in true menopause.

The problem for me was that I thought I was in menopause when I was hyperthyroid. I was 52 at the time, and all the signs and symptoms were there. EXCEPT those signs and symptoms (night sweats for instance, dwindling periods) were not caused at the time by menopause: they were caused by being hyperthyroid. Once I got my thyroid hormones controlled at normal levels, the signs of menopause went away, and stayed away for several years. And the headaches came back as well.

Just food for thought. I don’t know if that is your situation, but it most definitely was mine.

[Bobbi]

in reply to: New to the board w/Graves #1174051

Hi, and Welcome:

The “good” news is that you have a diagnosis right now for at least some of the symptoms that you have been experiencing. Our treatment options DO fix the problems that are caused by being hyperthyroid.

Eye symptoms: think of NOSPECs. NO symptoms. Soft tissue swelling. Protrusion. Exophthalmos (sp??). Compression (of the optic nerve). Having some eye symptoms does not mean that we will inexorably go on to awful eye symptoms and compression of the optic nerve. There’s no way to predict the development. But, as you have been told, people who smoke are at greater risk of developing more eye symptoms than others. It can help to go to an opthamologist for monitoring of your eye condition. Our endos do somewhat basic tests to see if our eye muscles are getting engorged and stiffening (they typically ask you to watch their fingers move around the periphery of your sight), but it is the opthamologists who actually monitor/treat the eye disease.

I used to be a smoker, and the hardest thing I’ve ever done in my life is quit. It helped me to recognize that it’s an addiction. A serious addiction. That means that my brain was my worst enemy when it came to quitting, because it was craving the nicotine, and constantly “telling” me that I could have “just one.” Which is not possible with an addictive substance. I told myself that I wasn’t quitting forever — just until I was 75. Perhaps, you could fill in the limit with “until the eye disease has passed,” or something similar. But then, I discovered that once enough time had passed (I don’t remember how much — maybe a month?) it became easier not to smoke at all than it had been not to smoke in all those places where smoking has now been banned. Perhaps that bit of insight will help you, if you decide to well and truly quit.

[Bobbi]

in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173911

Gatorgirly: You probably know more about this sort of thing than I do, but according to my Merck manual, palpitations are not necessarily dangerous. Some of us “do” feel extra strong pulses from time to time when there is nothing really wrong. I’ve always attributed mine (which happen occasionally) to a heightened nervous system, rather than to anything to do with the heart itself. Well, now I do. When I was hyper and feeling them frequently, AND having an extra fast pulse at the time, they did indeed cause me concern about my heart.

Also — again this may be information no one needs, but when you have been on a beta blocker for a while, you cannot stop it all at once. We need to WEAN ourselves from the medication, otherwise the symptoms that the drug has been preventing come bouncing back with a vengeance.

[Bobbi]

in reply to: Please explain how hyperthyroidism can return after RAI #1174027

What you will get from us is guesses, which isn’t necessarily helpful. There ARE situations which would necessitate more/less replacement over time. Losing/gaining a lot of weight. Going through menopause. Perhaps other situations. There have also been discussions occasionally on this board about the regeneration of thyroid tissue after surgery. I’ve not heard of it after RAI.

I will tell you that at one point in time I gradually went from 125 to 0 replacement hormone, over a few months. I was considering calling my thyroid after the Terminator, because it seemed to have come out of the RAI “truck fire” skeletal but still lethal. Then, after about three months on no replacement hormone at all, I had to go back on it, and gradually increase it over time, back up to 125. Go figure.

The only explanation I got at the time was that the disease is autoimmune; that “some” thyroid cells could still be present, functioning, and that the antibodies were revving it back up. Not a comforting thought at the time. But since then I have only had to have minor adjustments of the replacement hormone from time to time, both up, and down. I’ve been on mostly the same dose for the past 12 or 13 years.

[Bobbi]

in reply to: question on treatments #1174011

Most endocrinologists that I know of, support using the antithyroid drugs, barring situations in which 1) the patient’s liver functions change drastically; or 2) the patient’s white cell count plummets; or 3) the patient has serious allergic reactions to the drugs. Not everyone is a candidate for the drug therapy. If you fall into any of those categories (or other categories in which the drugs are showing, or have the potential to show dangerous effects on the body), then you will have a hard time finding a doctor to go along with continued treatment. If you are, however, just starting out, and want to try the drugs, most endos do not have a problem with it.

[Bobbi]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173414

Again, to re-emphasize Kimberly’s comment: too much Vitamin D is toxic. And it can build up in the fatty tissues of the body. Be under a doctor’s care, and make sure that the doctor is checking your levels periodically, when you are taking large supplements of this vitamin.

[Bobbi]

in reply to: Hello everyone #1172667

I, too, had a GP that had definitive blood work and missed the hyperthyroid diagnosis. Frustrating. As far as taking medications like the Inderal, it is important to discuss things with the doctor before changing dosing patterns.

And, please know that we do get well again. The two treatment options (drug therapy or thyroid removal) have a proven track record of giving us our health back. Some patients may not be able to do what they would prefer — treatment-wise — due to specific health considerations unique to those patients. But with several options, we do look forward to getting our health back.

[Bobbi]

in reply to: Is surgery not an option if I can’t take Methimazole or PTU? #1173988

Hi, MHLee: I’m sorry for your predicament.

I cannot answer your questions about how long before surgery, etc….you really need to listen to your doctor, or get a second opinion from an equally qualified doctor.

The issue with surgery is this: Generally speaking, no surgeon will operate – for any reason other than abject life/death emergency — on a patient who is hyperthyroid. Operating on the thyroid itself when someone is hyperthyroid is even more dangerous. The risk of thyroid storm is significant. And people have died as a result. You might find a surgeon willing to try, but most likely you will be given arguments against doing the surgery, unless your thyroid levels are controlled somehow.

I would strongly recommend that you understand that YOU are the person most emotionally involved with the process of nursing your son. Babies have thrived over the decades being bottle fed. Nursing is better. No question. But babies need to be cuddled and fed at the same time and there’s usually no reason why the bottle cannot provide the feeding with the cuddling still in place.

So you need to do what you can to get yourself healthy again. Your baby NEEDS a healthy mom, not just breast milk.

[Bobbi]

in reply to: Loss of Taste and Smell After RAI? #1174001

Approximately 80% of the medical information online is bogus, outdated, or otherwise unreliable. One of the quickest ways someone should become skeptical is if the site is trying to sell you something…whether it is a book or a “tonic” or whatever. RUN from those sites, as a rule.

Thanks, gatorgirly, for your comments. It’s a help.

[Bobbi]

in reply to: Flu and Pneumonia Vaccines #1173975

My doctors always advised FOR getting the vaccine against the flu, and pneumonia. And, now, my GP is advising me to get the shingles vaccination as well. When I was on ATDs, I also was given a flu shot, by a previous GP, but she only gave me half a dose at a time. I think that is because sometimes the ATDs can suppress our white cell count– at least that is the explanation I remember at the time — and she was trying to err on the side of caution: i.e. giving me protection from the flu, but in step fashion rather than all at once.

[Author]

Posts