[Bobbi]

in reply to: Thyroid Regeneration? #1173335

One thing to keep firmly in mind as you go forward — the replacement hormone drugs belong to a group of drugs — like blood thinners and antiseizure medications — that have what pharmacists call a “narrow therapeutic index” (NTI). For them to work properly we have to maintain a specific concentration of them in the blood. We have to have regular blood level checks to make sure that the concentration is right. And changes in how we take the meds can interfere with that concentration. Even changing from one brand to another, or from one generic to another, can alter the concentration in the blood and throw things off. It is really important to be consistent. If you change how you take the meds, or if you start taking other meds at the same time, or if you change generics (a different drug store), or anything like that, you could be changing the concentration of the replacement hormone in your blood and throwing things off.

[Bobbi]

in reply to: newly diagnosed while planning to conceive #1173318

Hi, Mickiko, and welcome to our board.

As you have found out, not all doctors agree on treatment options. It can make our lives very interesting. Another thing that makes things interesting is that we can mis-interpret what we hear when we are hyperthyroid and ill, or only remember parts of it. So, it can be confusing. Be sure to ask follow-up questions, if they occur to you, and don’t be surprised if you got comments a bit twisted. Our concentration goes a bit wonky while we are hyperthyroid.

And not all of us agree on treatment options, either. What one patient did, or did not do, may not help you to figure out what YOU feel most comfortable doing. Some of us are not at all comfortable even with the small risk the antithyroid drugs (ATDs) pose to the developing baby. To figure out how you feel about this, you might talk with your pediatrician and/or with a pharmacist. Some of us wouldn’t touch RAI with a ten foot pole — and I felt the same way about surgery, irrational though that feeling was. But all of our treatment options are generally safer than remaining hyperthyroid, and the only bad choice you can make would be one that your doctor warned you specifically against for known medical reasons.

One thing is certain, though. Before you get pregnant, you need to get well again, by whatever treatment option you finally decide on. Optimally, you need to be healthy when you get pregnant. And that will take a bit of time. We DO get well again. Our treatment options do work to give us back our health. But our bodies typically need a few months at controlled normal levels of thyroid in order to heal from the stresses and damage caused by being hyperthyroid.

Wishing you good health soon,

[Bobbi]

in reply to: OK now what…RAI Seriously??? #1173293

Hi, Darcy: Just a quick comment to something you said in your comment to me — i.e. that you know I’ve had Graves for years. From my perspective, that is not a true statement. And, to all of you out there who want to argue with me, please don’t, because this is my personal take on things. So, yes, I have Graves antibodies. True. But at this point, it is no big deal because I got rid of my thyroid, and I have been healthy….repeat HEALTHY….for 15 years. Replacement hormone works well. So, I don’t really think of myself has “having Graves” the way those of you who are currently battling hyperthyroidism or the eye disease think of yourselves as “having Graves.”

I stick around here on this bulletin board, not because I still consider myself sick, but to give those of you who are in the throes of battle with this nasty disease a bit of hope. No, to give you LOTS of hope. I know how ill you feel, or how downright scared you are with the eye disease. I’ve been there. I was dreadfully ill. But, I am the norm. I am like thousands of other people who, through one treatment or another, got well again. Our treatments work to give us back our health. Please keep that thought firmly in your minds while you are casting about for what treatment option to choose. They are ALL better than remaining hyperthyroid.

[Bobbi]

in reply to: OK now what…RAI Seriously??? #1173288

Hi, Darcy: I’m sorry you are finding yourself in this quandary.

A bit of — hopefully — perspective. It sounds like you are boxing yourself into a corner, both emotionally and medically. You don’t want RAI, and the reasons sound more emotional than rational to me. And, I’m not arguing that you should do RAI. I’m just pointing out that basing your reasons on fear makes little sense when you are coping with a serious illness that can cause life-long repercussions unless it is treated promptly and effectively. FEAR BEING HYPER. It is currently the devil you know, but it is a devil nonetheless. The example of your friend, notwithstanding, RAI has made millions of us healthy again. Surgery to remove the thyroid may be a more common occurrance now than it used to be, but it is not considered “as safe” as RAI. And your doctor may be splitting hairs on that, I don’t know. Surgeons nowadays seem to have a better handle on thyroid surgery than they did in the past. Regardless, please try to be objective.

And, furthermore, if you don’t think your doctor is giving you good advice, consult another endocrinologist with good credentials and see what that doctor has to say. Don’t “shop around” for a doctor who will tell you what you want to hear. That doesn’t serve your long-term health either. But getting input from another equally well-qualified source can sometimes help clarify our choices.

[Bobbi]

in reply to: Depressed / Fatigued – Frustrated #1173042

First: I am sorry that you are feeling rotten, still, NLBatten. I’m not remembering the specifics of your Graves’ journey here, but the first thing that crossed my mind is that you need to expect to spend months AT normal levels of thyroid hormone for your body to heal. We do not automatically feel well again once our levels are normal. You should see improvement over when you were hyper, but not necessarily absolute “normal,” for a while.

Second: You have done the right thing in getting your thyroid levels checked. Obviously, when you feel rotten, “off,” getting thyroid checks are a good place to start because if they are off, it is easy to fix.

Third: Since those levels are apparently not “off,” you now have to get your doctor to help you figure out what IS causing you to feel depressed and fatigued. This is not necessarily the job of the endo, although it can be a huge help if the endo is willing to pursue the symptoms and try to figure out what is wrong. But since your endo seems to be unavailable that way, if you can go back to your GP or internist, that could be a place to start.

But, going back to my first point. It takes time at normal levels for us to heal. Think of the analogy of someone who just had a knee replaced — the new knee does not automatically give them mobility. They have to do physical therapy to regain mobility and normality with the knee. Well, we, too, need to do a bit of “physical therapy” to regain muscle strength and stamina. We don’t necessarily have to see a physical therapist, but we do need sometimes to force ourselves to take walks, pump iron, do what we can to restrengthen returning muscles. I remember being tired when I first started exercising after RAI (when my doc said it was ok). And I would take short walks — 15 minutes or so — a couple of times a day. I would be tired to begin with, but the wee bit of exercise helped to make me feel a bit less tired. Or maybe it was just getting out in the sun, and doing “something.” Whatever it was, I felt a bit better for the small bit of exercise. And it helped me to do more, over time. If you have been waiting to feel better before you do things, you might try to reverse your thinking and make yourself do a bit of exercise. If it’s too hot, take the walk in a local enclosed mall. But do baby steps. Test your stamina , don’t wear yourself out.

And, treat yourself to a funny movie, even if it’s a rental. Put yourself into a situation where you will laugh — it does make us feel better. I must have watched my dvd copy of “Jumpin’ Jack Flash” a dozen times or so while I was recovering from hyperthyroidism. I would be feeling down/depressed and I would put that movie (or a Bill Cosby monologue) into the player and watch and start to chuckle, and I DID feel better for it. You might try it.

I hope you are feeling better soon.

[Bobbi]

in reply to: RAI or Surgery? #1172993

I would point out the part of kararoot’s original post which said that while her thyroid levels had dropped, her liver values had “tripled.” I took this to mean that her liver function had been tested prior to the “tripling,” when she had been put on the drug in the first place. If that is true, then it does not suggest that hyperthyroidism caused the elevated liver enzymes.

[Bobbi]

in reply to: RAI or Surgery? #1172990

If the drug that has been demonstrated to have a smaller impact on liver function is causing liver distress, what in the world makes anyone think that the OTHER drug — which is known to cause more liver distress – is going to be an improvement?! Some people can tolerate these drugs, and some people cannot. Obviously, it is frustrating to be the winner of the “cannot tolerate the drugs” lottery. But other treatments DO work without risking liver failure.

[Bobbi]

in reply to: TSH Testing Only Once Stabilized Post RAI #1172146

My bit of unsolicited advice is this: take the synthroid first and expect it to work. The vast majority of us who had our thyroids removed live well on synthroid type replacement products alone. And these products are much, much safer for the body than adding a jolt of T3. I was one of the people who listened to all the internet mumblings about needing additional T3. And even though I was on a minimal dose of it, for only about a year or two, it eventually — not right away, but eventually — made me thyrotoxic and the blood tests showed nasty elevations of T3. And now there are funky heart waves on EKGs that raise doctor’s eyebrows.

So, it isn’t worth it. Don’t assume your doc is a stick-in-the-mud because he/she doesn’t want to experiment with Armour or Cytomel first. They KNOW that T4 replacement works without the extra jeapardy for the vast majority of patients.

[Bobbi]

in reply to: What happens next? #1172882

Hi, Maryrenvall: I was warned by my doctor NOT to wrap when applying the cortisone cream to my legs. I know different doctors suggest different things, but I wanted to make sure that your instructions came from your doctor, and not some anonymous person on the web.

[Bobbi]

in reply to: Hours until surgery #1173011

Hi, kms1246. I’ll add my voice here wishing your son well. You two will be in my thoughts tomorrow.

[Bobbi]

in reply to: RAI or Surgery? #1172986

Any medical intervention has it’s pros and cons, kararoot. In your decision between RAI and surgery, you would be well-advised to base your considerations on facts and not fears. One of the basic facts that I think you need to know is that you can live well without your thyroid. Yes, there might be bumps in getting your replacement hormone levels properly fixed. There also might not. Nevertheless, some folks online do complain a lot about not getting things right, and I can tell that those posts have fed into your fears. The problem is — boards like ours are skewed towards illness, and towards problems. In the real world, healthy people no longer need these boards for support. Take a look at our archived posts. The problems are the same, year in and year out. But the posters are different. The names change every few months as people get treated (by whatever route) and get their health back. THIS board tries to keep a few of us who have indeed regained our health to provide a bit more balance to the posts.

As to trying to save your thyroid. That would be fine if the meds were not threatening your liver. But you cannot live without your liver. You can live, and live well, without your thyroid. If the meds are damaging your liver, you must make a choice between RAI and surgery. I had RAI and got well again. My mother had RAI 25 years or so before me, and got well again. Shirley here on the board had surgery, and got well again. I have several personal friends who had either RAI or surgery, and got well again. The normal course of events is for the replacement hormone to give us our health back. It works, and works well for the majority of people who are on it.

Wishing you good health again.

[Bobbi]

in reply to: Feeling Harvested? #1172907

What is known about antibodies is that they are tissue specific — or, perhaps, more realistically molecule specific. Just as any old key will not unlock any old lock, but only the lock for which it was designed, antibodies do not roam about looking for random tissues on which to wreck havoc. They attack the molecules for which they were developed. Period. What is also known is that someone who has developed one autoimmune disease is slightly more prone than the average person to developing a second autoimmune problem. But it involves different antibodies, not the ones that caused our thyroid problems.

[Bobbi]

in reply to: thyroid and eye disease #1172302

We’re told not to exercise when we are hyPERthyroid because of the added strain on the heart and muscles. Once we get to normal, or subnormal, thyroid levels it becomes safe to exercise again. But do take baby steps to test things out: sometimes we pull muscles or get shin splints, etc., by trying to do what we did before we became ill. Build up gradually to make sure y ou are not stressing your weakened muscles.

You may find that you don’t need replacement hormone once the effects of the tapazole have worn off. It may have been what was making you hypothyroid, and without that drug, you may go back to normal levels of thyroid hormone for a while. Some of us do have the antibodies for both Graves and Hashimoto’s thyroiditis, so we do swing back and forth between hyper and hypo, but most of us that go hypo on the meds can stop them and have normal levels for at least a while. You need to keep being monitored.

[Bobbi]

in reply to: What happens next? #1172873

In the U.S. many of our doctors seem to still want to limit people to two years or so on the ATDs. In foreign countries, it is much more common for people to stay on them for long years. It is important that you try to find out, from your own doctors, what their thinking about it is. Your doctor may be reluctant right now to speculate until he/she determines how well your body is tolerating the meds. But after a few months, you might be able to have a more thorough conversation that will give you insight into your doctor’s opinions and reasons for them.

[Bobbi]

in reply to: And now, my vanity…. #1172886

Basically, the body “considers” our hair and nails to be non-essentials, so when we are ill nutritional resources tend not to get to hair and nails and they become more fragile. Hair and nails are the first things to lose nutritional resources and the last things to get them back as we get healthy again.

I was advised by people to treat my hair very gently during the time I was ill hyperthyroid. I stopped perming. My long-time hairdresser refused to put any type of harsh chemical on my hair. I have also heard that coloring is hard on hair. I tried to do a very casual style that required little to no “fussing,” and certainly no “teasing.”

[Author]

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