[Bobbi]

in reply to: New to forum, subclinical hypothyroid #1075090

Hi, Thumper:

All "subclinical hypothyroidism" means is that your tested levels of actual thyroid hormone are "normal", but the TSH is slightly elevated. There can be any number of reasons for this happening, including an autoimmune problem, a response to illness or injury, taking corticosteroids or some other medications. The treatment is to prescribe, or increase the level of thyroid replacement hormone. Since you had RAI, and are already taking replacement hormone, raising the meds is an easy fix (or first attempt at a fix).

Even with RAI, there are typically thyroid cells still functioning. Not a whole lot, usually — especially if we have had an ablative dose of RAI — but enough that we can, occasionally require adjustments in the replacement dose. Antibodies can rev remaining cells into producing an extra amount of thyroid hormone, so that we need to, at least temporarily, lower our replacement dose. Antibody action can lower, and we might find ourselves needing a tad more replacement hormone. It’s annoying, but given that we’re on replacement hormone, the remedy is right at hand: changing the dose of replacement hormone.

But do not expect your dose of replacement hormone automatically to make you feel good. There’s more to feeling good than just a specific dose of replacement. Getting appropriate nutrition, and most importantly, getting a bit of exercise when we are hypothyroid (even if we have to drag ourselves out) can make a huge difference in how we feel. And, also, there can be something else going on that is making us feel ‘off’ that has absolutely nothing to do with thyroid. My first step is always to check my thyroid levels. If they are "off" it is a bonus. If not, I look to lifestyle, and then to the GP to try to figure out what else might be going on.

Being slightly hypothyroid can make the eye symptoms more pronounced. It does not "cause" the eye disease, but if the body is not functioning at par, then the muscles may not be able to compensate for the imperfect focal point and double vision can occur, or get worse, and the puffiness can increase. Getting back to better thyroid levels can eliminate those issues.

And, about the Armour: some folks do try that. And some like it. But you would have to go back to square one. The doctor would most likely put you on a low dose (because Armour contains the potent form of T3 which can aggravate heart conditions, etc.) and then gradually raise you up, just like when you started the Synthroid. The dose has to be carefully calibrated. It might work; it might not. My endo put me on synthetic T3 once, which made me feel great for a while — and then sick. I was on a very small dose of T3, and it made me ill. It is very potent stuff. When she took me off of it, I was absolutely positive I was going to start again having the problems that had resulted in me taking it in the first place, but instead I felt great! Go figure. It can all be very confusing.

Bobbi — NGDF Online FAcilitator

[Bobbi]

in reply to: Second Opinion #1075093

Hi, beana:

I’m not sure what you wanted from this second opinion. It sounds to me, however, like you encountered a constructive doctor. I’ll explain.

First off, if he does not think that the symptoms come from hyperthyroidism, he did suggest that it was possible that something else is going on. Usually, we hear a doctor say, "It’s not your thyroid." Period. Many of us have had to prod our doctors to look beyond the Graves for something else. It is completely normal to blame all of our physical problems on thyroid — but unfortunately, sometimes something else IS going on.

Second, he suggested tinkering with your dose of PTU to see if changing it moves the TSH and allows you feel better. This sounds like flexibility to me. He is not "stuck" on one particular measure within the normal range.

I do hope you are feeling better soon.
Bobbi — Online FAcilitator

[Bobbi]

in reply to: support for Mom with graves disease #1075096

First off, advice could be different if your mother is suffering from the thyroid problems as well as from the eye disease. You spoke exclusively about the eye disease, but when you mentioned depression, anxiety and nervousness, those sound like issues most often associated with thyroid imbalance. So one suggestion is to get those thyroid levels checked if they are not being monitored.

The eye disease can be devastating. If she is "only" (and I dont’ say that to minimize the problem) suffering from that, the depression might be addressed by seeing a psychiatrist for an evaluation. There are medications some people take (even when their eyes are not involved) to bring back quality of life.

She needs to know that the eye disease usually burns itself out in 18 months to 3 years, so she might very well be at the end of the horrific part sometime soon. One of the moderators here has had over 16 eye surgeries, so there is familiarity with how awful a siege someone can go through. But there comes a point in time when the bad changes cease, and the problem can be fixed. The folks I know from this board who have had multiple surgeries for the eye disease all look terrific to me. I know they look different than their image of themselves, but the surgeries can work to minimize the distortions caused by the eye muscle enlargment.

As for something more immediate: if she would tolerate it, take her some comedies to watch on her TV. There was a time when I was feeling very depressed by the disease – its length, the eye complications, etc. — and I put comedy movies on to watch. Everything that made me laugh, made me feel better. I must have watched one moviea dozen times or more. It always made me laugh, and the laughter always made me feel better (both physically and emotionally). It does not trivialize the ordeal to seek out laughter: it is a life saver in my opinion.

Bobbi –Online Facilitator

[Bobbi]

in reply to: How many are like me? #1075115

Hi, Lynne:

No, that was not me. I would indeed do RAI again. And Ski has done it twice, because her first dose was too small to be effective. I think I remember seeing the post you are asking about and, if my memory is correct, the person who wrote it is DianneW. She has had a particularly grueling battle with this disease.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: 23 and just diagnosed with Graves Disease #1075174

I do understand how scarey heart palpitations are. Before I was diagnosed, I suffered one fairly close to my GPs office, and I went directly there in a panic. They gave me an EKG (finding nothing wrong), nitroglycerin tablets (as if I weren’t scared enough!)and signed me up for a cardiac stress test. I subsequently learned that heart palpitations are not the same thing as atrial fibrillations, and are not usually something we need to worry about. How to tell the difference, though is the big issue. And, I cannot help you with that . Talking with your doctor about it might help you to figure out when to call 911 and when to let things be, and just take a few deep relaxing breaths. Also, it might be possible for you to take a prescribed medication that will minimize those heart flutters, and also protect your heart from the effect of too much thyroid hormone. Not everyone needs this type of medication (a beta blocker); some folks should not take them. So it is a discussion you need to have with your doctor.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: 23 and just diagnosed with Graves Disease #1075171

How soon you will feel the effects of the PTU are anyone’s guess. The problem is that the thyroid cells not only make thyroid hormone but they STORE it. So, while the PTU is busy interfering with the cells making new batches of hormone to plague you with, the stored hormone is being released. Until those stores are used up, you won’t notice much difference.

Second. Just arriving at "normal" levels of hormone will not mean that you feel normal, or that you will suddently have all of your strength back. It just doesn’t happen that way, unfortunately. A doctor at one of our conferences told us that she uses a comparison to a hurricane. When a hurricane (or tornado, or earthquake, etc.) occurs, once the winds have died down is everything ‘normal’ again? Nope. It takes time to rebuild. It is the same with hyperthyroidism. Just getting the hyperthyroidism gone doesn’t mean things are OK. It takes time for the body to rebuild.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Hello Everyone #1075105

Hi, Kim, and welcome:

I have Graves, and I am healthy. The treatments available to us are effective, and much safer than hyperthyroidism. So, while I know it is scarey to be diagnosed with something like this, know that it is very treatable.

There is a list of recommended reading on the main/home page of the NGDF. The books recommended there can help a lot when it comes to understanding what is happening, and what the treatment options mean. If you read up a bit in one of those books, you’ll be able to whittle down your questions for your endo, so that you get the biggest bang for the $176 visit!

Bobbi — NGDF Online FAcilitator

[Bobbi]

in reply to: New to Graves and struggling with life… #1075391

Skichick posted this question in this thread:

[i:2h7jgdfn] can’t believe how many posts and unique experiences all of you had. Not to mention all of the advise. I am also Type A and feel like I am awful because I can’t do it all. My endo on weds said he overshot the mark with me and increased my PTU this time instead of reducing. I have a question – how long do I fiddle with the meds before it is time to think about RAI or thyroid surgery. I would rather not do the RAI since I want to have a baby and I have heard that you can’t until 1 year after treatment. Is this true? Thanks again. Jillskichick732

Posts: 4
Joined: Fri Nov 14, 2008 6:39 pm [/i:2h7jgdfn]

Hi, Jill:

You probably will have to "fiddle" with the meds relatively constantly as long as you are on them. You have a complete, and diseased, thyroid. The thyroid is being aggravated by antibody action, and antiboy levels can rise or fall for no well-understood reason. So, while you have your thyroid you can expect for there to be fluctuations in your dose of ATD required. Some folks do experience remissions (i.e. low, low antibody levels) for a while, but remissions are, by definition, temporary (although some can be years in length), and recurrance of the disease is pretty much a given.

So, the issue becomes one of whether or not the ATD does a thorough job of keeping you in the "normal" zone.

And, the issue is also one of what type of medication you would prefer to be on while pregnant, and perhaps nursing an infant. If you are a person who would eliminate caffeine, alcohol, cigarettes, etc. while pregnant, you might not feel comfortable being on a drug that is known to pass into the baby. PTU crosses the placental barrier in smaller concentrations than does methimazole, which is why doctors prefer us to be on PTU if we are pregnant and hyperthyroid. That preference does not mean, however, that –given a choice — our doctors would prefer us to be on ATDs as opposed to replacement hormone. You should talk with your own doctor about this issue.

We are asked to wait a year (sometimes less, but let’s say a year) for two reasons. The first is that allows several egg cycles to pass. Our doctors think that the radiation exposure to eggs that are just about to be released is greated than to eggs that are dormant. So, we wait through several menstrual cycles — the typical "low" end recommendation is six months.

Then, we should wait until we are stabilized on replacement hormone, and our bodies have had a chance to heal. This can take a while. My GP at the time I got ill told me that in her experience, it takes a good nine months for someone to go through treatment and stablized hormone levels, before they feel themselves again. On average. For some of us, it took longer. But being healthy when you enter a pregnancy is huge.

I hope these comments help,
Bobbi — NGDF Online FAcilitator

[Bobbi]

in reply to: How many are like me? #1075112

Hi, and welcome to our board.

I do understand how scarey it is to comtemplate RAI. I found it a very difficult decision to make, even though I had the example of my own mother who had done it about 25 years before me, and it made her well again. I was, more or less, driven to RAI because I had a bad reaction to the antithyroid meds. I still quibbled for a while.

All of the information that we have says that RAI does not impact future fertility. Wonky thyroid levels do have an adverse impact on fertility. Studies have also shown that it does not lead to any statistically significant increase in birth defects, either.

You are currently in a situation where the devil that you know (hyperthyroidism + antithyroid meds) is more comfortable to you than the unknown of either RAI or surgery. But hyperthyroidism is the WORST option for you in terms of fertility and long-term health. Studies have demonstrated that even minor levels of hyperthyroidism over time are horrid for long-term health. So, if the antithyroid drug isn’t working to control your thyroid hormone levels in the normal zone, you really do need to consider the other options.

I assume you have talked things over with your doctor. If you have not, that is going to be your best source of information. If you do not trust your endocrinologist, get a second opinion from another one.

Wishing you well,
Bobbi — Online Facilitator

[Bobbi]

in reply to: Glad to find you here #1075148

Hi, Malia:

When I was given permission to start exercising again, after RAI and a bit of time on replacement hormone, I went to an exercise physiologist who analyzed my strengths and weaknesses and prescribed an exercise routine. I was amazed to discover that I had only 8% (yes, EIGHT percent) of the strength of a normal woman my age, as a result of the excessive levels of thyroid taking away muscle. The muscle does come back, and it does need exercise to strengthen it. BUT — and it is a major "but" — 1) your doctor needs to tell you it’s OK to exercise at this point in time, and 2) if it is OK, you need to listen to your body. What you consider "light" exercise from your pre-Graves experiences is, perhaps, very much too much for your body right now. When I began exercising, the only "weights" I could use on my arms, to get the number of reps wanted, were paperback books! So, if you are leaving the exercises exhausted, you are doing too much, even if, in your mind, it does not seem like too much.

We do regain our strength, and our stamina over time, but at the early stages we can experience "set backs" — which are morale busters — if we push too hard.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Choosing Thyroidectomy on Purpose #1075737

This is basically to aaagraves, about the recommendation to have surgery rather than RAI, because her RAI didn’t "take." Or, to anyone else, for that matter who thinks that surgery will definitely "fix" things — as opposed to RAI. The data suggests that the failure of the treatment to correct hyperthyroidism is the same — approximately 10% — for either RAI or surgery.

There are undoubtedly many factors to explain this bit of data — primarily, however, it is the misconception that people have about how much tissue the surgery will remove. As a general rule, surgeons leave "some" thyroid tissue in order to protect the parathyroid glands, and also in order to protect the nerve that services the vocal cords (which runs through the thyroid). So, our thyroidectomies are, typically, "partial" not total. And if thyroid tissue is left over, there is always the possiblity that there is enough for the patient to remain hyperthyroid — less hyperthyroid than before, but still hyperthyroid.

Whether someone who has had RAI can then opt for surgery is a question I don’t have the answer for. It may vary from patient to patient. You would need to talk with your doctor.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Glad to find you here #1075144

Hi, Malia, and welcome to our board.

It might just be that you need to climb into bed for two months! Hyperthyroidism is a bit like being hit by a metabolic Mack truck. Every cell system in the body is adversely impacted by wonky thyroid levels. You have been really, really sick. So, I would suggest that you ask yourself this question: "If I had been run over by a Mack truck, would I expect to be running on a full schedule right now?" If the answer is "Of course not, Fool!" then you need to slow down and prioritize, and give your body some slack.

I had my RAI right before Thanksgiving, twelve years ago. I felt dreadful throughout the holidays. But it was the holidays, right? And I felt I "should" do all kinds of "normal" stuff. Well, I had been fortunate enough to talk with a counselor at one point, and realized that I could not continue to do everything. It was temporary, but I needed to pull back. That year I prioritized like mad. I bought ready-made foods, I did not do a bunch of holiday baking, I ruthlessly eliminated anything that was going to tax my meager strength; my husband had to pull up some of the slack; I also had the blessing of a cleaning lady who was a Godsend. And, I enjoyed the holiday with my family. Afterwards, my oldest child told me that I had really made Christmas special that year. Focussing on what was truly important was noticed by my family.

So, right now, you are in a "recovery" mode. Your body will not even begin to recover until you are at sustained normal thyroid hormone levels. As for advice: make lists to help your foggy memory; prioritize activities and eliminate any that are not absolutely crucial; ruthlessly eliminate "empty" calories. Yes, it is the holidays. But you can enjoy them, without adding to weight gain, by portion control and eliminating foods that do not provide good nutrition. And, yes, climb into bed when you are feeling tired. You have earned it.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: TSH levels, then and now #1075141

One thing I’ve learned in the 12 years that I’ve "had" Graves ( at least diagnosed Graves) is that reading test results is not nearly as straightforward as I would like.

That said, it might help to know that the TSH is a type of "running average" of our actual thyroid hormone levels. A running average actually takes longer to "center" than one would like. Because it is a running average, we need to be patient and wait the required amount of time for our next blood tests: testing too soon can cause a hormonal yo-yo, at worst, which is something to be avoided if possible. Also, it was thought when I was diagnosed that the TSH was suppressed for so long that it might take time for the pituitary to "wake up" to new thyroid hormone levels.

I don’t know the answer to these issues. I think you should just make sure that you are being checked regularly, and if you start showing a whole list of hypothyroid symptoms, you should talk with your endocrinologist.

Bobbi — Online Facilitator

[Bobbi]

in reply to: What Now? #1075155

It seems like you have been through the wringer. The RAI usually works on the first try to rid us of the scourge of hyperthyroidism.

I understand what it is like not to be able to participate in an activity that is a passion. But it strikes me that you might look forward to being able to run again, if only you and your doctors can get your hyperthyroidism under control. I cannot give you advice about the "best" way to do that — only your doctor can do that. I can tell you that there are only three options that have been proven to work: the antithyroid meds, RAI or surgery. Anything else is unproven, and a time waster. And, as a result, dangerous.

I can only advise you to "hang in there." Discuss your treatment options with your doctors, and then do it. The fellow who started this board long ago (Jake) used to give frequent pep talks about us thinking of ourselves as Graves’ warriors. The warrior image did help me when I was going through snafus and snags on the road to recovery. I imagined myself wearing a Valkyrie helmet. Perhaps such an image (if it doesn’t make you laugh) could help you, too. Although, come to think of it, laughter also helps from time to time.

Wishing you much better health, and soon.
Bobbi — Online Facilitator

[Bobbi]

in reply to: to wristmaker #1075214

Hi, Wristmaker:

Just a comment about what tapazole (and any other antithyroid drug) does: It provides a chemical block that interferes with the chemical process by which iodine is turned into thyroid hormone inside the thyroid cells. If you take too large a dose, you could go hypothyroidl; if you take too little of a dose, you would remain hyperthyroid. So there is a balancing act that goes on when taking these meds. You and your doctor need to find the Goldilock dose — the one that is "just right" at any given point in time. Since your TSH went so high, stopping the med, temporarily, makes sense. It does not necessarily mean that you are "well" again, however.

Also, the disease we have is caused by antibodies, which can rise or fall in number for no well-understood reason. So, sometimes, we experience lower levels of the antibodies than others. This will necessitate a change in the dose of antithyroid drug you might need. It does not, however, mean that the disease has gone away.

That is one of the reasons why it is so important for us to have some consistency in doctors, if possible, and also to get regular blood checks to determine just where our levels are at. Barring consistency in doctors (or nurse practitioners), the suggestion that you get a copy of each and every blood test result and keep them in a file, can be helpful. Then, any new doctor would have immediate access to that history.

I do hope you are feeling better soon.
Bobbi — NGDF Online Facilitator

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