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in reply to: Is there anybody out there? #1066438
There’s a potential for confusion here, Magnus. Perhaps. Your question had to do with whether or not you have a weakened immune system because of the Graves. There are certain circumstances under which our immune systems are less able to ward off disease. Number 1 is if we are actively hyperthyroid. Being hyperthyroid is an illness (no matter what the cause), and it weakens our bodies’ abilities to fight off infections. Notice, this is true of ANY serious illness.
Number 2 is SOMETIMES when we are on antithyroid meds. As Kimberly pointed out , the antithyroid drugs have an occasional/rare side effect of seriously suppressing our immune systems. That is why we are warned when we go on them to report any severe sore throat or other infection that doesn’t seem to go away. There is debate (again Kimberly mentioned it) about whether or not some slight suppression of the immune system goes on routinely with these drugs, so our doctors often become cautious. My own GP when I was first diagnosed wouldn’t even give me a whole flu shot, even though there was no live virus involved. This was almost surely overkill. I was also warned to stay away from anyone who had received certain types of vaccinations done with debilitated, but still live virus.
Other than with those two conditions, we can expect to have normal immune system protections. This is particularly true of anyone who has had their thyroids removed, and are at controlled normal levels of hormone. Our immune systems are not suppressed by the autoimmune condition all by itself. When our immune systems are suppressed in some way, there is impaired antibody action: antibodies cannot fight off disease. But our disease, being CAUSED by antibodies, would also go away, or lessen.
in reply to: HypEr vs. HypO #1066417With either condition you need to take medication of some sort to get you back to normal levels of thyroid hormone. I believe that the medication for lifting us out of hypo back to normal is safer than the antithyroid meds that lower our thyroid production from hyper to normal. Everyone can do their own research on this issue. But that is my "take".
in reply to: Please tell me yoru RAI story!!! #1066410I had RAI in November of 1996 — the week before Thanksgiving. By the first week of January, I was slightly hypothyroid, and put on replacement hormone. The only medication I was on after RAI was the beta blocker. I lost weight after RAI, probably because I was so sure that I was going to gain, that I started a food log and wrote down everything that passed over the lips. I wanted to be able to prove to my endo that I wasn’t over-indulging. It undoubtedly kept me ruthlessly honest. I went down 18 pounds before gradually starting to regain weight (with returning muscle).
in reply to: Some questions from a newbie… #1066442Actually, posting your blood tests doesn’t do much here: nobody here is qualified to interpret them for you.
As for your question about whether an autoimmune disease is a sign of a weakened immune system: no. Our immune systems made a mistake, and created an antibody to a normal body part (in our case the thyroid). But unless those antibodies are creating havoc with the thyroid organ (i.e. unless we are hyperthyroid, and sick) we can expect to have normal health. What makes us sick is wonky thyroid levels. If the thyroid levels are controlled in the normal zone, our immune systems should be working just fine when it comes to other diseases. If, however, our thyroid levels are out of control, we can become weakened and get sick more frequently with other infections.
in reply to: Went hypo..on levoxyl..when does it kick in? #1066736If you do not feel hyperthyroid any longer, Susan, then it probably is ‘working.’ I must tell you that when I went in for my first blood work, five or six weeks after RAI, I felt terrific, and I was hypothyroid. I always knew I was more on the tortoise end of the animal spectrum than the antelope end.
Anyway, if your doctor has suggested a time for you to come in for blood work, do it, even if you feel well. If nothing else it will give you a sense of what type of progress you are making. To answer one of your questions, though, some folks do go euthroid (i.e. normal levels of thyroid) after RAI. It’s pot luck, but it does happen on occasion.I’m really glad to hear that you are feeling well.
Getting your levels under some type of control on the meds is terrific. That is definitely something to feel good about. But remission is defined as being able to go off the meds for a year or more while maintaining normal thyroid levels. Many people who do the meds stay at controlled levels of hormone, and some with a low level of medication, but that does not mean that they can go off the meds necessarily.
in reply to: confused re: dosage & brand change #1066446Our doctors tend to go by the TSH numbers, and not the numbers for the levels of thyroid hormone itself. Why? It was explained to me that there are two reasons, basically. The first is that the test for TSH is "finer:" it is accurate to a much more sensitive level than the tests for actual thyroid hormone. Second, TSH is like a running average, it moves up and down with less volatility. Thyroid hormone has a fairly short life span in the body (at least the T3 does) and therefore the picture you get one moment could be quite different from one at another time during the day. The way I imagine it is to think of a party for small children. If you take a photograph, you might get a spat, or a beaming child — it’s a moment in time. That is the thyroid hormone. But if you take a movie camera, you get a sense of the party as a whole: that is the TSH.
As to switching brands: there is, obviously, debate that has been ongoing for quite a while. But what most doctors do is check our blood levels after a brand change, as well as after a dose change. Since you are doing both at the same time, it probably doesn’t matter. Your blood levels of thyroid will be checked before too long passes, and the effectiveness of the brand change will be taken into account.
Good luck,
A "cold" nodule is a clump of thyroid cells that are inactive, inert. They are not, typically, producing thyroid hormone, growing, dividing, or undergoing other cell metabolic processes either. Conversely, a "hot" nodule, would be a clump of thyroid cells that is wildly over-active, producing lots of thyroid hormone. That, at least, is an amateur’s explanation. ; ) I have a family member who is at higher-than-normal risk for thyroid cancer due to radiation exposure as a baby, and when he turned up with cold nodules, we were told that they are rarely cancerous. He was biopsied anyway, to be on the safe side, due to his risk factors.
in reply to: Graves’ Eye Disease #1066466I know how you feel. Having our appearance change due to the eye disease is a major emotional issue for many of us. One thing I discovered, that may help you (I hope so, anyway). I found that when I smile, I don’t look as "bad" as when I don’t smile. Give it a try. It’s a small thing, but knowing that when I’m happy, or laughing, or smiling that I look more like my old self allows me to relax a bit and not feel so self-conscious. I started getting comments from doctors about how much better my eyes looked, too. Some of that, over time, was due to the fact that some of the symptoms remit when we go into remission with the eye disease, but I am pretty sure that some of it is due to me being happy again, as well.
Wishing you a good day,
in reply to: Graves eye disease and decompression surgery #1066451Hi. I want to say welcome, too. I do not know anything about the treatments for myasthenia gravis in particular. I do have a couple of friends with severe rheumatoid arthritis who have to take immune system suppressants to keep their disease under some sort of control. It’s not a perfect solution, but it has helped them somewhat.
As for the thyroid eye disease (TED), if it isn’t "cold" yet, there could be additional swelling. But if your husband’s doctors are putting him on an immune suppressant, that drug would also suppress the antibodies causing the eye muscles to swell. So there could be a double benefit.
I would recommend that you start a list of questions you and your husband have. It’s really common for us all to forget questions when we are seeing our doctors. The minute we leave, or get home, there’s this "DRAT!" moment when we remember a question that we forgot to ask. But if they’re written down, we’re less likely to forget them.
I hope this information — puny though it is — helps.
in reply to: do you have this pain #1066483I only had moderate eye disease, so I probably won’t be much help. No pain, just double vision and frustration. I did have some huge pain one time, though, from a herniated disk in my neck, and it was all-consuming. I couldn’t think of much else. So, I can empathize somewhat with the pain you are going through.
I think it is important to try to break the pain cycle. If it were me, I would talk with doctors about what is going on, and what suggestions they might make to help alleviate the pain. Sometimes doctors don’t really "get" how much pain an individual is experiencing. But it is important to try to convey it to them. Also, I tried acupuncture with my herniated disk. It did stop the pain for those treatment half-hours. I would have liked it to be a permanent fix. It wasn’t. But it did provide me with half-hours that were completely pain free. And, I think as a result, I was able to get beyond the pain quicker than I might have otherwise. Getting rid of pain helps muscles to relax. Constant pain can cause tight muscles to spasm, adding to pain. So, having pain free time can help.
I do wish you good days ahead, without pain.
in reply to: recurring pretibial myxedema #1066502There is no treatment to stabilize the antibodies without suppressing our immune systems. But if we suppress our immune systems, then we become much more vulnerable to viral and bacterial infections. So, the quick answer to your question, charlene, is "no."
in reply to: RAI with eye involvement #1066498I read an analysis of the study long ago that apparently showed that in 16% of patients doing RAI there was a temporary worsening of their eye symptoms. This was the same study that showed that doing steroids like prednisone at the same time as RAI prevented the temporary worsening from happening. The study abstract that I read did not define "temporary" nor did it indicate how much worsening was involved. The analysis, however, went into the fact that steroids have their own set of side effects, and that author did not think that prescribing steroids for 100% of RAI patients to avoid a temporary worsening for 16% of them was advisable. So, the issue is significantly less than straightforward. People who have RAI do not, as a rule, take steroids before the treatment. Those people who already have significant TED, however, are advised to do the steroids, if they opt for RAI. Those of us with slighter symptoms of the eye disease, however, need to weigh the pros and cons with our own doctors.
in reply to: recurring pretibial myxedema #1066500Pretibial myxedema, like the eye disease, is caused by antibodies, not thyroid levels. So this is one of those conditions that can go into and out of remission as antibody levels rise and fall. I would suggest though that you get a dermatologist to reconfirm the diagnosis. I had pretibial myxedema, and then thought it had come back a few years later. The second problem, though, was not related to pretibial mxyedema.
I cannot remember where it came up, but I do remember that the issue of drinking while on the antithyroid meds came up sometime in the past. The logic had to do with the fact that the antithyroid meds are metabolized in the liver, and produce by-products that are toxic to the liver. The liver needs to be able to eliminate those by-products quickly in order to avoid damage. Alcohol is also metabolized in the liver, and produces by-products that are liver toxins. So drinking, while on ATDs is putting a double load on the liver, and might lead to serious problems. Obviously, the dose of ATD can make a difference. So it is wise to talk over with a doctor or pharmacist whether drinking is advisable on the specific dose of ATD you are on.
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