[Bobbi]

in reply to: looking for help with PTU treatment #1068112

A quick response here. A DROP in your TSH means that you are more hyperthyroid than you were at the previous blood test, which is why a doctor would RAISE your PTU dose. The TSH stands for Thyroid Stimulating Hormone, and it comes from the pituitary which acts as a "thermostat" for thyroid hormone production. When the pituitary senses too much thyroid hormone, it reduces its production of TSH (i.e. the TSH number drops); if the pituitary senses too little thyroid hormone, it raises it’s production of TSH to stimulate thyroid cells to produce more hormone. Think of a seesaw with TSH on one side and thyroid hormone on the other. As one goes up, the other goes down, and vice versa.

As to why there can be fluctuations? You have an autoimmune disease. Antibodies cause your thyroid issues. As antibody action increases, you have greater symptoms. But antibodies can increase or diminish for no well-understood reason. The medication you are on only affects the production of thyroid hormone. It does not affect the numbers or behavior of antibodies. They vary independently of the medication.

My endo — who I think is terrific, by the way — does not check for freeT4 and T3 levels on any ongoing basis. Those levels were checked initially to try to determine the degree of hyperness, whether or not methimazole or PTU might be a more appropriate medication, etc., but they are not necessary all the time. The TSH is considered a "finer" test, able to test more minute quantities of TSH than any of the thyroid hormone tests. And the TSH does not fluctuate as quickly as the other thyroid hormone levels do so it gives a larger picture of where our levels are on average. I point this out so that you won’t necessarily fault the doctor you see because he/she isn’t running those tests.

I do hope you are feeling better soon.

[Bobbi]

in reply to: Newly diagnosed & have questions please #1069170

The ONLY treatments that have been proven to control thyroid hormone levels are removal of the thyroid (via RAI or surgery) combined with replacement hormone, or the use of antithyroid drugs.

Trying anything else is like playing Russian Roulette with a revolver with only one empty casing.

[Bobbi]

in reply to: questions about methimazole #1068132

Hi, and welcome to the board.

It strikes me that if you were subclinically hyperthyroid, that the condition probably felt like "normal" to you. Therefore, changes that the medication might bring about might feel — at least at first — as "abnormal." Also, being diagnosed with something can make us more aware of abnormalities. But, no, hyper symptoms should not increase if you are on an appropriate dose of medication.

Doctors and scientists believe that even subclinical hyperthyroidism, over time, is dangerous. While we are hyperthyroid, we lose bone, so it can hasten the onset of osteoporosis. While we are hyperthyroid we lose muscle mass, particularly the muscle in the large muscles of the chest, upper arms and upper legs. This can appear as weight loss. (When our levels of thyroid are returned to normal, this muscle mass returns slowly, and this can appear as weight gain.) Most importantly, is the adverse impact on heart function. The heart is a muscle, so the same muscle issues can affect heart function. Also, and more dangerous, is that elevated levels of thyroid hormone have been shown to throw off the "electrical control" mechanism of the heart — the control that keeps the heart pulsing rhythmically. If the rhythm is thrown off — as sometimes happens — it can be life threatening.

As to how long you might have to take the meds: if your condition is due to Graves, you might have to be on medication of one sort or another for life. A percentage of us (20-30%) can experience a period of remission where the symptoms go away. Remissions are defined by being able to go off medication for a year or longer, with normal levels of thyroid. But Graves is an autoimmune disease, and does not typically disappear forever, although the antibodies have been known to wear out the thyroid over time, and cause people to go hypothyroid.

Hair and nails are some of the last parts of the body to heal once we are returned to normal levels of hormone. Having our hair go brittle, and break off easily, etc. is rather typical of excessive levels of hormone. If we go too hypo, the hair tends to fall out in clumps, but not be as brittle. Getting the balance right is important.

And, yes, one of the side effects possible from the antithyroid drugs like methimazole is achy joints. Whether that is what caused your situation is for your doctor to tell you.

I hope this information helps,

[Bobbi]

in reply to: 2 weeks on levoxyl no change? #1068197

I am so sorry you are having such problems. I know it is hard, but two weeks is still too soon to start fretting.

First off, the dose of synthetic replacement you are on may not be the right dose yet. There may be thyroid cells still dying off, you might eventually need more — or less of a dose. Some doctors start out deliberately low, because they do not want to risk making us hyperthyroid again. Sometimes, the doctor tries to estimate the right amount needed, but adjustments have to be made.

It does start to work right away, and is converted, right away, into T3. It also builds up over time to provide a cushion of T4. T4 has a half-life of almost one week, so any that your body does not need and use one day, gets saved to be used another day. Over time, it builds up.

The hardest part right now is that you truly have to wait a while before having another blood test to determine whether or not to adjust your dose. If you go in too soon, and your TSH has not had a chance to adjust properly to the dose you are on, you could put yourself on a hormonal roller coaster. My doctor, against her own comments, changed me too soon: she thought I looked more hypo than I should have, and adjusted my replacement up. I went hyperthyroid, and had to have things readjusted weeks along down the line. It is better to guts things out and wait however long your doctor recommends between blood tests.

I do hope you are feeling better day by day.

[Bobbi]

in reply to: To use an apt term – Scunnered! #1068354

OK — here’s the warm cuddly post. ” title=”Wink” /> This, too, will pass. You will reach a point where you can anticipate feeling well as much of the time as you did before getting Graves. It’s hard when you are going through all the hormonal changes, and waiting for your body to heal. It takes way, way more time than any of us want. The vast majority of us regain our health.

Jake, who started the bulletin board long ago, created an image that helped me a lot when I was where you are now: the Graves Warrior. Instead of feeling like I was the prey of some giant cosmic joke, the "Victim", I began to think of myself as a fighter. It made a difference, so I pass it along.

And, I’m sending hugs —

[Bobbi]

in reply to: Does age impact ATD’s? #1068556

Some background on age and medications in general. You may be aware that the older the patient, the more likely it is that they will have adverse side effect issues from drugs. This is because as we age, our livers and kidneys (the organs that help to process waste products out of the body) become less and less efficient. The articles I’ve read indicate that this process can start as early as in our 30’s.

Many — if not most — drugs are metabolized in the liver. As the drugs are metabolized into a usable form in the liver, by-products are often produced, and sometimes these by-products are toxic to the body. If the liver can process these by-products out quickly enough, they won’t make us ill. But as we age, and as the liver becomes less efficient, the by-products can build up and cause problems for us. This can happen even with drugs that we used to be able to take with no problems.

[Bobbi]

in reply to: Would you switch docs? #1068520

Sometimes the doctors get blamed for the inefficiencies of the office staff. I cannot tell whether that is what is happening to you at this point in time, but it might be. They might be scheduling too many patients, too closely together. They obviously are not handling the paper work part of things well, otherwise you would have had the information you needed by now.

If it were me, I would go into the office and wait for the paper work to be handed to me. Or to be given an exact time when the paper work would arrive. I would be nice about it, but I would be firm: You may not know precisely who dropped that ball, and it doesn’t pay to yell at someone who isn’t the responsible party. But, bottom line, you obviously need that paper work, and it doesn’t sound like they’re going to get it to you any time soon. It is obviously an unnecessary trip for you, but if you need the paperwork, you may have to resort to a trip.

Wednesdays off are not necessarily the reason for the waits in office. My endo takes Thursdays off, and her office runs like clock work. I have, in the past, given up on other doctors due to long waits in some cases, but not in others. It depends on the doctor. If I really like the doctor, and they run behind all the time, I book appointments at times when I am almost guaranteed not to have to wait: i.e. first appointment in the a.m. or first appointment after lunch. ” title=”Wink” />

[Bobbi]

in reply to: Had a melt down tonight…. #1068534

I am sorry you had such a bad day.

Could it be that the power going out was a bit too much like getting Graves? In other words, it was one more thing that you could not control, taking over your life and wrecking things? It’s just a thought.

We do get well again, Deb. It takes some time for the body to heal. In the mean time, if you can cut yourself some slack — even a wee bit — you might find the process less frustrating. Most of us tend to be Type A people — doing, doing, doing. But while we go through RAI and the healing process, our bodies need us to relax a bit. Melt downs are often brought about because we are doing more than our bodies can bear.

Wishing you a better day today,

[Bobbi]

in reply to: nancy patterson #1069409

A rationale behind the "go slow" approach: the endos prefer to keep us off the hormonal roller coaster as much as possible. In other words, they would rather estimate a touch low and then increase slightly, than go overboard, and put us back into hyper territory and have to reduce things. As much as we were all "used to" being hyperthyroid, it is a very dangerous condition, and while we don’t feel well hypothyroid, it is not as immediately threatening to life as hyper is.

[Bobbi]

in reply to: Weight Gain – Oh NO!!! #1068876

Perhaps it would help to understand some of the issues behind weight gain/loss with Graves. While hyperthyroid we lose muscle mass. For some reason, the excess levels of thyroid cause the body to "eat" muscle. Now, muscle weighs more than other tissues, and therefore, we see weight loss when we lose muscle. (Yes, there can be some loss of "flab" too, but right now, the issue is muscle.) Losing muscle lowers metabolism because muscle burns more calories, even at rest, than other tissues do. So with muscle loss we cannot eat as much as we used to without gaining weight. Some of your weight loss — if you lost weight with Graves — was lost muscle. This is BAD weight loss.

When we get stabilized to normal levels of hormone, muscle gradually comes back. It isn’t strong muscle unless we exercise it. But it comes back. And this can appear as weight gain. But, it is GOOD weight gain because it is raising your metabolic rate, and allowing you to eat more without gaining.

So, obviously, the issues are complicated. Please do not obsess with weight gain to the point where you are not getting good nutrition or are skipping meals. You NEED good nutrition right now because your body has been through the wringer. As long as you are eating properly, the weight issues will normalize. And eating a minimum of three meals a day helps to keep metabolism up as well.

I hope this info helps.

[Bobbi]

in reply to: GD and Lupus…Why different Dr.s for them??? #1068896

I understand your frustration: I hate being a big toe to one doctor, a thyroid to another, and eyes to a third. But there are no doctors that treat "autoimmune" disorders across the board. Graves affects the thyroid (endocrinologists), the skin (dermatologists) and the eyes (opthamologists). Lupus requires a rheumatologist or a dermatologist (or both — my best friend has the discoid version that is only affecting her skin at the moment).

[Bobbi]

in reply to: Updates….. #1068901

Hi, Krystal:

Thanks, so much, for posting this message. Newcomers to this board most definitely need to hear good, positive news.

Good luck with the job search. And I am so glad you are feeling so much better.

[Bobbi]

in reply to: RAI sore throat? #1068933

Hi, Runlacie:

The reason you were told not to eat shellfish, tuna, etc. in the days prior to RAI was to try to leave space inside thyroid cells for the iodine in the RAI. If we ingest too much iodine, there will be no place for the RAI to settle in the thyroid.

So, since it has been a while since your treatment, any RAI that did not make it into your thyroid has been eliminated from the body. And eating those foods should not have an adverse effect.

If you want to be on the safe side, talk with your endo’s office.

Wishing you good luck,

[Bobbi]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070638

Hi, Worried Mum:

Hyperventiliation could be associated with excessive levels of thyroid, but it would not be wise to assume that is the cause. Your daughter needs some really good medical evaluation.

As to undergoing surgical procedures while hyperthyroid, it is usually not advised unless the risks of waiting for medication to bring thyroid levels down are worse than the estimated risks of the surgery.

This whole series of events must be wearing on you and your daughter. I hope she gets relief soon.

[Bobbi]

in reply to: How much Tapazole is too much? Results tomorrow… #1068940

Hi, Mongo:

Your Tapazole dose "kicked in" immediately, but it can take a bit of time before we feel results. The reason: the drug interferes with the production of "new" thyroid hormone. But the thyroid actually stores previously made hormone, too. That stored hormone gets released in response to the demands of the pituitary (TSH). So, until the stored hormone is used up, we do not feel results from the ATDs.

[Author]

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