[Bobbi]

in reply to: Lots of tears #1066651

Hi, sunshine:

I know just how awful it is to have the eye disease diagnosed. I didn’t have a very bad case of it, because I never needed surgery. But I got double vision, and a bit of protrusion, and the fat pocket swelling, etc. At the time this happened (about 10 years ago or so), the docs were not routinely doing radiation to try to contain the swelling of the eye muscles. It was being studied at Mayo, and I tried to get into the study but was not able to. Anyway, my doctors took a wait and see approach, watching for problems with the optic nerve but not prescribing anything. I was in a panic for a lot of months.

But as Ski said, the eye disease does remit. After the so-called "hot phase" where symptoms come and grow, the disease goes quiet, and over time, some of the symptoms go away. I now only have doubling of my vision when I’m tired, and the appearance of my eyes has improved significantly, even though they don’t look pre-disease "normal." So, if you can hang onto that information, it may help you to keep a bit calmer during your hot phase.

I do wish you good luck,

[Bobbi]

in reply to: Feeling so angry, when will i get answers? #1066644

I can give you my experience. While on PTU, and at normal levels of thyroid (i.e. euthroid), I felt horrible. From comments online, I was told that I "must" be hypo — I wasn’t. I decided that I was having a reaction to the PTU, and made the decision to have RAI. I was told in comments online that I would feel the same way or worse after RAI. I didn’t. Thank goodness. I never, ever again felt as bad as I had while euthroid on PTU. In fact, after RAI and settling into replacement hormone, I have felt terrific. So, I know from my own experience that some folks cannot take the antithyroid meds, but they can do RAI or surgery and get well again.

Some of us do not handle the meds as well as others. Replacement hormone isn’t precisely a "med." It is chemically identical to our body’s own thyroxin (T4). It is used precisely the same way as our body’s own thyroxin. The only side effect issues have to do with getting too much of it (we become hyperthyroid) or too little (we are hypothyroid). If we get the right amount of it we are euthroid. Some, extremely few folks have a reaction to the inert ingredients (things like food coloring) that turn the chemical into pill form. There are, however, manufactured products that do not contain the dyes, etc., to get around that problem.

So, you need to adjust at least one part of your thinking. It’s a semantical quibble, but it may help you. Removing your thyroid (whether via RAI or surgery) will not leave you hypothyroid for the rest of your life. You will be euthroid on the replacement hormone, not hypo, just like you were pre-Graves.

We are extremely lucky with our autoimmune disease: we can live, and live well, without the organ that our body is attacking. If you cannot do the meds, and it sounds like you may not be able to, do know that you have options that can make you well again.

Good luck,

[Bobbi]

in reply to: Still Graves? #1066662

First of all, you need to distinguish between being hyperthyroid and "having Graves." If you are hyperthyroid, it shows up on a simple blood test. If your thyroid levels have been checked and they are normal, then you are not hyperthyroid, or hypothyroid. Those are easy things to rule out.

"Having Graves" is another issue. We will always carry the antibodies that caused the hyperthyroidism. They do not go away, typically. If your thyroid is gone, though, those antibodies cannot do a lot of harm any longer. They attack specific targets: the thyroid gland; in a very few people these same antibodies also can affect the muscles of the eyes, and the skin on the lower legs. But the GRAVES antibodies won’t make you feel the symptoms you are describing unless they are causing aberrant levels of thyroid hormone. The 5% thyroid that is left "could" be the issue, because antibodies CAN rev things up for that 5%, but if your thyroid levels in blood tests are normal, that 5% is NOT the problem.

There are other possibilities. Did your doctors consider fibromyalgia? I have heard recently that doctors are starting to see this as a legitimate, and perhaps autoimmune problem. Chronic fatigue syndrome is another condition that may be in the process of being re-evaluated as potentially autoimmune. I think they’ve also found a viral connection to at least one of these diseases. Anyway, I would keep on pressuring the docs to try to figure out what IS going on. It’s helpful to know what is not going on, but you still need to find out what IS making you feel so crumby.

I hope you get your answers soon.

[Bobbi]

in reply to: how do you get over the anger? #1068104

I suppose the most important thing for you to understand, hockey, is that getting tested too early does not, in the long run, get you back to health quicker. That probably goes contrary to what you think — after all if you don’t wait, and you need a change, then it seems like getting tested earlier than suggested would be a good thing.

It would, IF the test results were an accurate reflection of your thyroid hormone status. They might be. But if they are not then whatever adjustment is made will either be too much, or too little. If it’s too little, you are prolonging the agony. If it is too much, you are back to square one, starting over again. In the experience of the endos, waiting six weeks to three months (and my endo prefers the three months) gives a more accurate view of the patient’s overall thyroid levels, and therefore is the quickest way to get to stable levels of replacement.

As for what to do about the anger and impatience? It might help if you sit down and try to analyze when it happens. Are you in the middle of trying to do too much? Are you pushing too hard? It has been suggested that Graves people are often "Type A" personalities. I know I am. So, if you are, if you are pushing too hard, you CAN (and I speak from experience) figure out how to ease your load. I stopped doing things that made me feel pressured, made me feel fatigued, unless they were something I wanted — or absolutely needed — to do. There are laundromats, dry cleaners, ready made packages of food. There are paper plates and plastic eating utensils. I think you get my drift. When you feel pressure build up, sit down and do some controlled, deep breathing in a quiet place. Go for a short walk. Put some music on that soothes you. Don’t try to clump all the "necessary" activities together, but space them out a bit, giving yourself time to relax. You notice I’m not talking about changes to other people. That’s a short walk to a dead end. The only person you have the ability to change is yourself. If you are feeling tense, frustrated, impatient, and angry find a constructive way to ease your load. Cathycm is training to be a wellness coach, and she put out a long list of good ideas for taking care of ourselves today. If you haven’t read them yet, go look at them.

I do hope you are feeling much better, soon.

[Bobbi]

in reply to: Need some encourgement please! #1066690

What is the goal? If the goal is to increase strength and stamina, starting out with an exercise program that exhausts you and creates pain and tremors (which can be a sign of weakness) is counter-productive. It doesn’t matter if your mind tells you that you had "light intensity" exercise. What you called light intensity may have been true pre-hyperthyroid. But we lose muscles while hyperthyroid. Post-hyperthyroid, light exercise can have a completely different meaning. I was serious when I mentioned that I started "pumping iron" with very thin paperback books. The reason for that was because I could not do 15 reps with even 1 lb. weights. I certainly could not do three sets of 15 reps with 1 lb. weights. But I could with very thin paperback books. And I worked up to 1 lb weights fairly quickly, without injuring myself. But when I tried to do too much, too soon, I got pulled muscles, shin splints, tennis elbow, you name it. So, it would probably help to readjust your thoughts about things and start out very, very carefully. It is probalby preferable to spend a week doing too little — i.e. only taking 10 minute walks each day, for example — than trying to do too much and feeling awful afterwards, and taking days in between to recover.

There’s a saying in the exercise world "if there’s no pain there’s no gain." I did not subscribe to that while I was trying to work my strength back. When there was pain, I quit. The point was to keep making progress, not to quit. The point was to feel more energy, not less. And I kept that firmly in mind as I worked my way back to strength.

[Bobbi]

in reply to: Confused #1066669

There are people who can have less than optimal results from any treatment option for any disease. The problem with the internet is that it provides a constant forum for all those cases, without necessarily providing the balance of posts from all the people who were helped by a treatment. People who are ill, who have had bad results, who are opposed to something or other, will come online and post. People who have gotten well again, do not haunt these forums. They are back living their lives. They are not dwelling on "disease" by and large. It actually takes a fair bit of patience to come on when you are well and read all the problems associated with disease. So online forums can be skewed towards problems rather than solutions. This particular forum wants moderators who have gotten well again as a counterbalance. We occasionally see posts here from folks who have gotten well again, but not very often, other than from the moderators. And the moderators have typically done RAI. One of the current moderators, James, is doing well on the meds.

If you want to test my comments, go back in months, go back through the archives, and read the posts. They will sound every bit the same as the current ones. The issues, the fears, the problems remain constant. The names, however, are changed.

Yes, I had RAI 12 years ago. It made me well again. I did not have a completely easy time of things getting to a single dose of replacement hormone. In the midst of a particularly trying time, I nicknamed my thyroid "Arnold" for The Terminator. I figured my thyroid had come out of the "truck fire" of RAI skeletal, but still lethal. (It does help to keep a sense of humor.) Anyway, what I experienced was that my swings of hormone were easily accomodated post RAI, and that I never, ever felt as horrid as I had while on PTU, or while horridly hyperthyroid. I know that RAI can make someone well again. I also know that surgery can do the same. Or the meds, if they work effectively to control hormone levels without side effects. And replacement hormone has remarkably few side effects: it IS T4/thyroxine, so as a result its side effects are hyperthyroidism if you take too much, or hypothyroidism if you take too little. It does — to my mind at least — simply things a lot.

So, I suppose what I am saying is that any of the three treatment options can give someone back their health. I was made well again by RAI. The hard part for you is to work with your doctor to find YOUR optimal treatment path.

[Bobbi]

in reply to: Confused #1066667

It is a really bad idea for the patients to tamper with their med dose, without the doctor’s knowledge. You are paying your doctor big bucks for his/her expertise here — you should follow his/her advice. And, yes, if you have doubts about the doctor’s advice, do seek a second opinion.

While some people claim to feel energized while hyperthyroid, many of us — myself included — just felt exhausted, sluggish and weak. I don’t think I’ve ever felt so tired as I was while I was hyperthyroid. And I didn’t lose much, if any, weight. Anyway, there is a list of symptoms, yes, but not every patient feels all of them. Some patients even gain weight while hyperthyroid. What counts is not so much the symptoms, but the blood test results. If the blood tests show elevated levels of thyroid hormone and depressed levels of TSH, you ARE hyperthyroid, whether you feel that you are or not. And even minor levels of hyperthyroid have long term bad health effects if allowed to continue. You need treatment.

Sometimes, we feel bad while on the meds, because the meds are causing side effects. I am not saying that IS what has happened to you, but it certainly happened to me. While on PTU, and supposedly at normal levels of hormone, I could not think, I was sluggish, etc. etc. I decided that it was the medication that was the problem, and got my thyroid removed via RAI. I just knew that I could not spend years on a medication that made me feel so rotten — if it was the medication at work. People online told me that I was making a mistake because I would feel that way when I was hypothyroid. They were wrong, thank goodness. I never felt that badly again, ever. As I said, this may not be what is happening to you. But most people who stay on the medications feel fine while at normal hormone levels, so feeling badly on them is something you need to discuss with your doctor. That’s especially the case if you are going to be tempted to be non-compliant with the dose as a result.

I do hope that you are feeling better soon.

[Bobbi]

in reply to: Ignorance or Arrogance? #1066671

I would like to suggest a different perspective: We Graves people are so very lucky. Yes, we have a very dangerous disease, but we also have three different medical options that have been PROVEN to give us back our health. Not all of them work for every patient, but when one option does not work for any one patient there are two more options. Most people with life-threatening conditions are not that fortunate.

I went online and read up on the supplement you mentioned. You need to notice that what it is purported to do is to reduce "symptoms" of hyperthyroidism. The symptoms mentioned that might be helped (insomnia, etc.) had absolutely nothing to do with controlling blood levels of thyroid hormone. THAT is what is making you ill: your blood levels of thyroid hormone. So what it sounds like is that this substance "might" help mask the symptoms, make us more comfortable. That’s it. The website that I visited was a medically sound one. It also said that further study was necessary before this supplement could be recommeded for people with hyperthyroidism.

Eating well, and making life style changes can definitely help keep you healthier. These things will not, cannot control your thyroid hormone levels.

Allowing elevated levels of thyroid hormone to continue is horrible for your future health. Even subclinical levels of hyperthyroidism have been shown to cause long-term health problems. So your problem is to find a proven treatment to control those levels of hormone. If the meds are not working, your options are RAI or surgery. There is no other real alternative.

[Bobbi]

in reply to: Need some encourgement please! #1066686

Well, even if you cannot get into physical therapy, and have to use a local gym, keep in mind that you are where you are at right now because you have been very sick. Even though the trimmer bodies make you feel bad in comparison, they have NOT been sick. You don’t need to apologize for problems created by illness, and you should not put off exercise (if your doc has OKd it) because you are not in the same shape they are. Wrap yourself in the concept of Graves WARRIOR and do what you need to do to make you feel whole and healthy again.

[Bobbi]

in reply to: Need some encourgement please! #1066684

I can only give you my experience on this issue — but I had to work my way back to strength and stamina very slowly, but with utter consistency. I pumped iron for the first time in my life (I was 52), and dragged myself out for short walks even when I wasn’t "feeling like it." It helped to make me feel better.

We’re all different in the amount of damage the hyperthyroid condition did to our bodies. If you lost a massive amount of muscle while hyper, as you said, you do need to condition the returning muscle so that it works well. I joined a "health club" sponsored by a local hospital. They have their exercise rooms in the same place as the out-patient physical therapy. It was great for me, because I wasn’t having to exercise along with "cute young things in thongs": everyone else was a debilitated as I was. And there was an exercise physiologist there who evaluated me and gave me a course of exercise consistent with my levels of strength, etc. He told me that according to his computer, I had 8% of the strength of a normal woman 52 years old. EIGHT PERCENT. That’s a whole lot of ground to make up.

So, obviously, I had to start with what seemed like idiotically light weights (literally I used small paperback books for arm "weights" at first). My point: it may help you to get back on track to get professional advice, and to recognize that you cannot simply go back to pre-illness normal exercise, etc., without working up to it.

I do wish you well, and hope you are able to regain that strength and stamina.

[Bobbi]

in reply to: Please help… #1066741

I don’t know where on the internet you got the information, Tamara, that you would need to be away from your baby for three weeks. I think you need to talk with your doctor about that. The internet is a source of information but not all of it is true. In fact, on medical sites it has been estimated that 80% of the info is either out-dated or dead wrong. You need to double check all info with your doctor. It is true that we need to stay away from babies and small animals for a while after RAI, but I have never heard of a doctor telling anyone that the time frame is three weeks. It might happen, but it all depends upon the dose of RAI, on the age of the child, etc.

If your rash and itching is due to an allergic reaction to the tapazole, and it cannot be controlled, and your doctor is pushing RAI, you need to seriously consider doing just that. Or ask the doctor about surgical removal of the thyroid since you don’t want to be away from your child. You do have other options.

[Bobbi]

in reply to: Armour Thyroid vs. Synthroid #1066772

Tamara: Armour thyroid is not for patients who have hyperthyroidism. It is for patients who have had their thyroids removed, either by RAI or surgery.

[Bobbi]

in reply to: Went hypo..on levoxyl..when does it kick in? #1066706

Don’t panic about that level of TSH/hypo-ness. With thyroid cancer patients it was routine, until at least a few years ago, for them to have to go off their replacement hormone for WEEKS prior to having tests to reassure that all thyroid tissue was gone. They went hugely hypothyroid. We don’t even come close, thank goodness.

The replacement hormone gets used immediately. That doesn’t mean you will feel any great difference immediately, but it will be used by your body. There are at least several reasons why you won’t feel any immediate change. First, you might not be on quite enough of a dose. Getting the dose right requires taking the dose for six weeks to three months, getting checked again to see how much it changed things. Sometimes our endos try to estimate how much we will need, and give us that dose. Other endos will start deliberately lower than they think we will need, just to be sure they do not cause us to go hyperthyroid again. (The replacement hormone IS thyroid hormone, and you can go hyper on it.)

Second, you thyroid cells can still be dying off at this point, so any dose you ultimately need would be affected by that.

Third, it takes time for the replacement dose to build up in your body. Ultimately we get a "reservoir" of T4 from the replacement hormone. Any part of the replacement dose that your body does not need one day is viable in the body for quite a while. (The half-life of T4 is just a tad under seven days — so of any that doesn’t get used this week, half of it is still viable after the week is over, etc.)

Just try to be patient. It’s wonderful that you are so quickly on the road to health. Some people do take longer after RAI to go hypo. Wishing you well,

[Bobbi]

in reply to: Taken off methimazole in Dec. back on in Jan. #1066754

In autoimmune diseases like Graves, lupus, rheumatoid arthritis, etc., there are periods of time when symptoms rage, and then, for no well understood reason, and at no predictable time, the antibody levels go down and the symptoms can abate (remission). Over time, an episode of raging symptoms will return. In Graves, a remission is defined as being able to do without the meds for a year or more.

The treatment options that we have for Graves do not control our antibody levels, they can only control our levels of thyroid hormone production. What treatment option you pick should be based on a completely realistic evaluation of your medical needs. There is nothing wrong with choosing any of the options, as long as you realistically understand what the outcome is likely to be and your doctor thinks that the option is appropriate. If the meds work to control your levels of thyroid hormone, without frequent swings into aberrant levels, and without side effect issues, how long you are willing to use them is usually your choice and has nothing to do with how long someone else used them. If the meds are not doing a good job of controlling your thyroid levels, or you experience adverse side effects, then you do need to evaluate your other options.

I understand that your hopes have been frustrated, and I’m sorry. I do wish you luck with your decision.

[Bobbi]

in reply to: people just don’t understand, and i don’t either. #1066785

One thing I did was recognize openly — to myself and my family — that my emotional responses to things were off-kilter. I stopped trusting my emotional responses, which gave me a wee bit of space between feeling things and acting on those feelings. If you cannot trust your emotional response, you are less likely to act on the emotion. I practiced "I" messages a lot through my adult life when confronting people about emotions and that helped me when I was going through the Irrationals with Graves. Instead of "You never pick up your clothes," an "I" message is "It makes me angry to find clothes all over the floor." Well, when the Graves Irrationals hit, I could say, "I am so angry about X, but I know it isn’t your fault." It helped, if only a little, to keep my loved ones from wanting to strangle me and put me out of my misery.

None of it is easy. Just know that this, too, shall pass.

[Author]

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