[Bobbi]

in reply to: Leukocyte Hyperplasia lesions?? #1065022

I cannot ask her about the itching: she went into the Peace Corps two months ago, and is somewhere in the back of beyond without power, running water or other conveniences. I do know that the creams combined with eliminating (as much as possible) sun exposure got rid of the lesions.

Bobbi

[Bobbi]

in reply to: So curious about how GD affects eyes. #1065099

I am not sure why an iodine contrast would be a problem for patients with TED, but some patients have allergic reactions to the contrast iodine and think they are allergic to iodine in general, which is not typically true. We need iodine, throughout our lives in order to have life. Iodine is the crucial ingredient in thyroid hormone, and without it the cells would cease to function. So, I guess to answer your question, it appears that the contrast form of iodine is somehow different from regular iodine. Is it because it is hugely concentrated? Or is it mixed with some other chemical? You would need to ask your doctors specifically what the problem is, and why you have been advised to stay away from it.

[Bobbi]

in reply to: Endo in 3 weeks a little worried #1065034

While I agree in principle with both Ski and lhc I want to give you a somewhat different slant on things. There are very good medical reasons why an individual patient should do one treatment over another, and it has nothing whatsoever to do with any "personal" opinion of a doctor. For instance, if you have some type of pre-existing problem with your liver — like autoimmune hepatitis or some other liver problem — doing the antithyroid meds could be more dangerous for your long-term health than removing your thyroid. Patients with other problems — heart problems for example — can be cautioned against the surgery or RAI. You, as the patient, owe it to yourself to keep an open mind and closely listen to what the doctor advises you and find out the OBJECTIVE reasons why that advice is being given.

More often than not, we do have a choice of treatment options. Situations in which we are advised against a treatment are not all that frequent. All of our treatment options are safer — in general — than remaining hyperthyroid. But if your doctor strongly suggests that you get one treatment and avoid another that you think you want, you need to get a second opinion from another doctor, because it could well be that in your specific case, the treatment you want to do is not safe for you.

I do wish you better health soon.

[Bobbi]

in reply to: Leukocyte Hyperplasia lesions?? #1065020

Hi, Sue:

I’ve never heard of this condition being associated with Graves disease. While it might be possible for someone else with Graves to have developed this condition — coincidences do happen — if it were a condition associated closely with Graves, it would be listed in some of the books about GD.

My closest friend was diagnosed with the discoid (skin) form of lupus, and there were creams that helped somewhat. She, too, showed negative for the more systemic form of lupus. She was told to avoid sunlight, which apparently makes the condition worse. So she wears sunscreen and long-sleeves. I don’t know if this information will help you, though.

[Bobbi]

in reply to: Armour Thyroid/Natural #1065068

To those of you who are on, or wish to try the Armour, just be very careful. I am one of the people who added T3 to my replacement regimen long ago, and pretty much for the same reasons Josh states. I wasn’t put on Armour, but on cytomel — the synthetic T3 replacement tablet. Taking cytomel gives a carefully measured dose (as opposed to the Armour at that time, which had a question mark about concentrations). Anyway, the problematic symptoms that caused me to take that pill (and, obviously, caused my endo to prescribe it) went away, leaving me feeling great. I took it for a year, perhaps two, and I began to have problems with it. I was dividing the smallest dose of the pill in half, because I could not tolerate more, and eventually I had chest pains, shortness of breath etc. Heart tests showed aberrant patterns. Blood work discovered that my T3 concentrations were too high, and I was taken off it. I was a bit saddened by this, because I expected the problem symptoms to come back. They did NOT come back. I felt, and continue to feel, very good on simple T4 replacement hormone. T3 is hugely potent, and as a result, can have an adverse effect on your heart. Be very, very careful with any product that contains it.

[Bobbi]

in reply to: only sleeping 2 to 4 hours night sooo tired #1065115

Hi, Cynthia:

If you just started your meds last Thursday, it is a bit too soon for you to feel the results of taking them. As Kimberly pointed out, the thyroid not only makes hormone, it also STORES it for future use. The medication we take when we are first diagnosed (antithyroid drugs) acts to stop the production of NEW thyroid hormone. But until the stored supplies are used up, we will not feel the difference. Taking a larger dose of the ATD right now won’t make a difference in those stored supplies. They are all ready for use.

Remember, please, there is no pill that instantly fixes our symptoms and issues. I know it is frustrating. The good news is that you have been diagnosed, and you are being treated. You are on the road to recovery, despite the fact that you cannot feel it right now. I hope you can hold that thought and let it give you strength.

[Bobbi]

in reply to: Exercise #1065090

I would definitely ask the doctor again, just to be on the safe side. But it is possible that with your level of intervention already (meds, whatever), combined with your level of illness, and added to the fact that you are listening to your body and not pushing things right now, that your doctor is OK with whatever you are doing. I would, indeed, get it nailed down, though. Being hyperthyroid can throw the heart rhythm out of whack, and exercise makes that a more dangerous possibility. Also, there seemed to me to be a problem with muscle biochemistry while I was hyper. The muscles didn’t "recover" (for want of a better word) as quickly from retracting/working. Pushing them caused strains and shin splints.

Wishing you well,

[Bobbi]

in reply to: surgery???? #1065075

I did not do surgery, but someone else, who has, will undoubtedly come here to give you some information. Also, you can search through posts to see what has been said on other threads. We’ve had a lot of discussion about surgery recently.

What I wanted to respond to was a sense I got from your post that you are viewing surgery as a "quick fix." I may have gotten the wrong idea, and if so I apologize. Surgery does remove the thyroid in one swoop, so in that sense it is quicker than RAI to bring about normal levels of thyroid hormone. But if you are assuming that, as a result, you will be feeling normal again right away, you are not quite correct. There is no quick fix for feeling normal again. It takes months at normal levels of hormone for our bodies to heal after being hyperthyroid. How many months depends upon how long someone went undiagnosed/untreated. Someone who spent a long, long time hyper, will take a longer time to heal.

I mention this not to discourage you. We do get well again. But there are many people who expect to feel normal again as soon as they start taking replacement hormone (or the ATDs) and when they do not, they panic or fret, thinking something went wrong. So think of it this way, please: if you had been run over by an 18 wheeler, would you expect to feel well again as soon as you recovered from surgery? Or would you expect there to be a long recovery period for the broken bones, etc.? Being hyperthyroid is — to our bodies — like being hit by a metabolic 18 wheeler. Just getting surgery (or doing RAI, or starting ATDs) does not fix things overnight. It STARTS our recovery. But there is a recovery period involved.

I do hope you are feeling much better, and soon.

[Bobbi]

in reply to: Newly dx with Graves/goiter #1065146

In answer to your questions about RAI and synthroid, I had RAI, about twelve years ago, and am healthy. Ski, too, had RAI. Twice in her case, because the first time the nuclear med doc didn’t give a strong enough dose, and she never stopped being hyper.

The radioactive isotope used in RAI has a very short life span, as radioactive materials go. It’s half life (the way these things are measured) is 8.1 days. In addition, it is extremely water soluble. And it ONLY is absorbed into the thyroid. These three aspects of it are important. Anything that is not absorbed into your thyroid is eliminated very quickly from the body via kidneys (urine), sweat and saliva. Drinking fluids in the first two days after RAI helps to eliminate any residual amounts of it even more quickly. What is left in your thyroid is half gone after 8.1 days. Nuclear scientists consider radiation "gone" after five half-lives. That means that there is so little of the substance left as to be meaningless. So, if that is the case, then for those of us who have RAI, after five half-lives (or 40 and a half days), the RAI is eliminated from our body completely.

As to synthroid. My reasoning about having to take synthroid (or something similar) for the rest of my life was this:

It is likely that we will have to be on some medication or other for the rest of our lives. Only 20-30% of people who go on the meds get a remission. Remission is, by definition, a "temporary" elimination of symptoms. It is not a cure. The hyperthyroid problem is going to come back at some point in time. And, remission, again by definition, is defined as being able to go off meds and have normal levels of thyroid for a year or more.

I looked at the side effect issues of the ATDs vs. the replacement hormone. Replacement hormone IS thyroid hormone. It is chemically identical to our body’s own T4. T4 is a prohormone — it cannot be used in cell metabolism unless it is converted to T3. So, I look at it as a "timed-release" T3. Anyway, all of the side effect issues listed in the drug manuals, with one exception, have to do with getting either too much of it (hyperthyroid symptoms) or too little of it (hypothyroid symptoms). The exception is that some folks are allergic to an inert ingredient that is used by the manufacturer to turn the chemical (levothyroxin) into pill form. Typically, it is an allergy to a food dye. There are replacement pills made without food dyes in them. One of the pill manufacturers uses lactose in it’s inert ingredients. Folks with a lactose intolerance might have to switch to a different brand. But other than that, taken in the proper dose, replacement hormone is easily used by the body without toxic side effects.

The issue with ATDs is somewhat different. There are potential harmful side effects from them, even if taken in the proper dose. These side effects are rare (less than 5%, I believe it is), but real. So, I decided to do RAI and take replacement hormone instead.

I do wish you good luck with your decision. Whatever you do, don’t put off treatment. Taking the ATDs initially is helpful, inasmuch as it starts to control your thyroid hormone levels, reducing the symptoms, and allowing you to think through your options. And, if your doctor wants you on a beta blocker (like the metropole) that is also a good idea. Having too much thyroid hormone is extremely hard on our hearts. Too much thyroid hormone makes the heart beat too fast, and can interfere with the rhythm of heart beats, causing arrythmias. It is important to get things under control sooner, rather than later.

[Bobbi]

in reply to: What are the signs of an allergy to Methimazole? #1065198

Pretibial myxedema isn’t a rash precisely. It is a thickening of the skin making it appear a bit like orange rind. Yes, it is a bit red, but mine looked more like raised, thick welts, than any rash I’ve ever had. It is possible that it can look like a rash — I don’t know. The thing is, a dermatologist could confirm the diagnosis by taking a skin biopsy of the affected area. Then you would know what you have.

[Bobbi]

in reply to: Going hyper after stable levels on synthroid #1065190

Please don’t panic and anticipate the worst. It is normal for there to be fluctuations from time to time in TSH and thyroid levels. Sometimes it can be caused by residual thyroid tissue left in the body. (RAI and surgery typically can leave a wee bit.) If there is any thyroid tissue left, it can be revved up by antibodies. At one point in time, when I had lost a lot of weight, my replacement level needed to be lowered. The thing is, changing replacement level is a simple fix. Don’t try it yourself, though. See your endo.

Wishing you good luck,

[Bobbi]

in reply to: I’m Post OD – Day 5…Pls Share your Comments #1065410

Hi, Sutan:

As Ski pointed out, pain level is definitely personal. But, more to the point, this surgery is not a "one size fits all" type of thing. I have seen descriptions on the board from individuals whose OD was approached in very different ways, going in through different parts of the face. It may make a huge difference as to amount of pain afterwards.

I do hope you are feeling better soon.

[Bobbi]

in reply to: Cost of Thyroidectomy #1065422

One of the more frustrating parts of our current health care system is that it is very difficult to find out the actual cost of procedures before the fact. It takes serious research. There’s no way an online source for you is available, at least that I know of. You would need to directly call the billing offices of your available hospitals and check. And call surgeons and ask for their charges. Ditto anesthesiologist. This is at least in part due to the fact that it depends on where you live, how expensive a procedure is going to be. There are HUGE differences based on geography.

Moreover, I cannot believe that RAI costs would be anywhere near the cost of a thyroidectomy. It involves swallowing a pill. Period. There is, typically, an uptake and scan test first, which may be pricey — I don’t know. The pill itself may be pricey. But there is no surgery room involved; no anesthesia; no recovery room, no surgeon costs, no anesthesiologist costs, no overnight stay in a hospital, etc. But if you should find out, in your research, that it does cost the same, please let us know.

[Bobbi]

in reply to: Incidence Rate of Thyroid Dumping After RAI #1065418

Speaking from my own experience — I was a 52 year old "anglo" when I had RAI — about one week after swallowing the pill, I was rather significantly more hyper. It lasted two or three days, and then subsided.

I don’t know what your doctor meant by the dumping phenomenon not being an issue. We have seen numerous posts here on the board over the years from panicked patients who thought they were going into thyroid storm when the dumping occurred. (It is not "storm" because the cells are dying and not making new hormone. In true "storm" the cells continue to manufacture new hormone as they dump hormone into the body.) It was definitely "an issue" for them. It was not an issue, perhaps, in terms of "danger."

I know of no documentation over incidence. My own endocrinologist, however, warned me of the phenomenon at the time of RAI, and gave me instructions for increasing my dose of beta blocker during those days in order to be more comfortable. This warning from a well-recognized, board-certified endocrinologist, suggests that it happens more frequently than not.

[Bobbi]

in reply to: new to GD/probably electing surgery/looking for support #1065462

The pros and cons will probably NOT be equally weighted. Our subjective feelings weigh in subtle ways. But if you put things down, and give yourself time to mull them over, you will come to a sense of what you feel MOST comfortable doing. I totally understand your comment about limbos, and feeling the need to move out of the dithering mode. At some point you will need to make a decision. But as long as you are using an effective treatment now, you do have time to let your thoughts settle. Take some deep breaths, plan something you enjoy, and get away from the issue for some hours or some days. If you are currently being treated, unless your doctor thinks otherwise, you do not have to rush yourself through this one.

[Author]

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