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in reply to: Conflicting answers from two Dr.’s…. #1065046
Actually, "interpretting" lab results can be trickier than we might suspect. But, at least if you look at the lab results yourself, you can ask follow-up questions from your doctor.
in reply to: Conflicting answers from two Dr.’s…. #1065044Another name for Graves is, somewhat technically, diffuse toxic goiter. What that means is when they do a scan, they don’t find clumps of cells over-producing, but the entire thyroid seems to be involved in whatever is going on (ie a diffuse pattern of activity). Toxic, of course, means it’s bad for us. Goiter relates typically to an enlarged gland. Anyway, there are a percentage of people who have diffuse overactive thyroids that do not have elevated antibody counts. It doesn’t matter. Too much thyroid hormone makes us very, very ill and we have to get rid of it.
Technically, as well, remission is defined as a "temporary" cessation of symptoms. Remission does not mean "cured." It means, "OK for the moment." And some of us have experienced it. It can last a fairly long time (years). The thing is, to pay attention during your annual physical that they are doing thyroid panels so that if you lapse, you will find it out sooner, rather than later.
I would recommend that you insist on receiving a copy of any blood tests your doctors run on you. Had I done that, early on, I would have noticed that the "normal" blood test I had had reported to me by a nurse was, in fact, seriously abnormal.
And, lastly, congradulations on having normal labs. I hope you are feeling well for a long, long time.
in reply to: Men and Graves’ Disease #1063271Levothyroxin IS thyroid hormone. It is chemically identical to the thyroxin created by the thyroid. In order to make the chemical into pill form, inert, non-active ingredients are added, but the chemical that acts on our body is one that our body was created to use naturally.
The only problems with it, typically, are associated with the same problems we have when we have too much thyroid hormone, or too little thyroid hormone. Mood issues do result from too much thyroid hormone, or too little thyroid hormone, and the same sort of thing happens if we are not on the correct dose of levothyroxin. You indicated that your husband is not on the correct dose, yet. That might explain why he is still feeling "off" emotionally. There can be other reasons as well, but, assuming you are correct, that it is related to the medication dose, there is something I can mention that may help — hopefully.
Of primary importance to getting our dose of replacement hormone balanced out correctly is the way we take it. It may be that you already know this, but many of us were not informed about the issue by the doctor or the pharmacist, and we spent too long trying to get adjusted properly on the meds. Thyroid replacement hormone must be taken first thing in the morning, on an empty stomach, with a glass of water, and we need to wait a minimum of 30-45 minutes before eating anything else. The reason for this is that some of the minerals in food can attach themselves to the thyroid molecule and prevent it from being absorbed through the lining of the small intestine into the blood. Once the thyroxin is in the blood there is no problem. Getting it there, consistently in the same dose, requires taking it before we eat anything. For the same reason, we are told to wait some hours before taking vitamins or mineral supplements, or other medications (if possible).
Unfortunately, we need to be on controlled, normal levels of hormone for our bodies to heal from the effects of abnormal thyroid levels. If your husband has been fluxuating in and out of normal, his body hasn’t really had a chance to heal properly yet. Or heal completely, yet. That can be frustrating. None of us like the realization that our bodies have flaked out on us. Taking longer than normal to get back to feeling well again can be depressing, too, in the general sense of the word.
in reply to: Concerns about Thyroid Storm #1063301A low TSH — out of range low, that is — typically indicates hyperthyroid levels of hormone. But, when we first start on antithyroid drugs, or have RAI, there can be a lag between actual thyroid hormone levels and TSH. TSH acts sort of like a "running average" of our thyroid levels, so if we spent a lot of time hyper, or were VERY hyper, just getting the actual hormones into the normal range won’t necessarily move the TSH for a while.
As to not feeling well. Getting to normal levels of hormone is only the first step in our process. It is important. But it must be maintained. We have to be at controlled normal levels of hormone for a while for our bodies to heal. They do not start to heal until normal hormone levels are reached. So, even though you have normal T4 and T3 levels right now, you don’t "feel" normal because you haven’t healed yet. Think of hyperthyroidism as being a bit like a metabolic hurricane. Once the winds are gone, things don’t instantly go back to normal. It takes time to rebuild and repair damage. And that’s a bit like how it is with our bodies once we regain normal, controlled levels of thyroid hormone. It takes time to rebuild and repair.
Try to focus on progress. Wee steps that you can see that show that you are doing better. One day, you will indeed feel normal again. But for right now, focus on progress.
in reply to: Chest pain but normal numbers #1063277I would suggest making an appointment with the doctor to talk things over. Persist, in other words, in trying to get some type of rational answer to what is going on. One thing to consider is the possibility that one of the medications you might be taking is causing the problem. You’d need to check with a pharmacist perhaps to see about that. One of my friends was in and out of emergency rooms for months a couple of years ago due to chest pain, racing heart and spiking bp. She was tested for adrenal disorders and lots of other issues. Hence the reason why you need to persist with the doctor. There can be lots of things that could cause this. In my friend’s case, the culprit turned out to be a medication she was taking. Her doctors knew she was on it, but never connected the dots. She only figured it out herself when she was on vacation, ran out of the drug, and the symptoms disappeared. She then checked with her doctors and, sure enough, the medication was on a list of drugs that were known to cause heart issues. She had taken the medication without problems for quite a while before this problem appeared, so do consider your meds.
Good luck. I know this must be scary.
in reply to: Newly Diagnosed with No Insurance #1063288With respect to the endo with whom you have an appointment: as Kimberly pointed out, patient griping can sometimes be eliminated as a reason not to see him. Finding out why he was fired from his previous position may be more to the point. Was it due to staffing cut backs at a public hospital? Well, then it doesn’t reflect badly on him necessarily. If there were other, more significant reasons, though, I agree it would be wise to be wary.
Graves does not have to be treated by an endo, however. An endo is an internist who specializes in the endocrine system. But a good internist, or even a good GP can provide you with preliminary treatment that will protect your health while you wait until you can figure out how to see an endo. And, they typically charge less per patient visit than endos do. It is of paramount importance that you do NOT defer treatment. Hyperthyroidism, if caught promptly is totally treatable. If you allow it to drag out, however, it can destroy your health.
In the grand scheme of the hideously high medical costs we pay in this country, treatment for hyperthyroidism is not at the expensive end. That doesn’t mean it may not be pricey it just means that it might be doable in your case. There need to be routine blood tests every few months. There are drug costs. If you removed your thyroid, replacement hormone is so inexpensive that it is cheaper than the co-pay I have to make. I’m not sure what the antithyroid meds — like methimazole — cost. It might help you to factualize the costs of your options, once you have discussed things with a doctor. It may well be that you have a choice of treatment options and you can pick the least expensive one. All of our treatment options typically work to eliminate hyperthyroidism, so buying the most expensive one doesn’t mean you are buying the most effective one. See your pharmacist and price the meds. Check with the hospital/doctor about the cost of RAI/surgery. And then sit down with your husband and figure out where your budget might have some wiggle room. What is not essential that you can forego for a while? Cable TV? Extra cell phone? Car? (Is there good public transit, in other words.) I once went three years without buying myself a stitch of clothing – well, I may have bought panty hose — because our financial issues were so tight. It isn’t easy, but it may be, that if you turn your mind in that direction, you will find ways you can temporarily budget for some medical treatment.
Also, sometimes you can negotiate a lower fee with doctors/hospitals if you agree to pay cash. About five years ago I was told that I needed to have a cardiac stress test, with the special radialogical markers injected. At the time I had no insurance to cover the test. I found out that it cost $5000 at the nearby hospital. But I got it for $1200 by negotiating with the cardiologist’s office to pay by check. It saves them money not to have to bill through insurance, so sometimes they are willing to "wiggle" as well. Keep in mind that doctors routinely accept less from insurance carriers than they ask for initially. So we need to ask. If one doctor won’t wiggle, maybe another one will.
I do know it isn’t easy. It’s a very stressful time as I remember all too well when I was having the cardiac issues. I do hope you can find help, or figure out how to manage, and get your health back on track soon.
in reply to: Concerns about Thyroid Storm #1063297Perhaps you would feel better talking with the surgeon who is scheduled to operate on the 29th, especially if the surgeon you have chosen does frequent thyroid surgeries. You could ask about any incidence of thyroid storm, in their experience; or you could ask whether they do anything routinely to prevent it from occurring.
in reply to: Do any natural/alternative treatments work? #1063309My daughter has a Masters in Chinese medicine, and is trained to treat people using acupuncture and Chinese herbs. I asked her about this issue several years ago. At that time, there were no (repeat NO) double blind studies to determine the effectiveness of acupunture and Chinese herbs at treating hyperthyroidism. She believed she could treat hyperthyroidism — but told me that since she tailors all treatments to the specific patient, that there was no way to use double blind studies to verify effectiveness.
I don’t know about you, but I’ve seen too many treatments that were supposed to be effective, only to find out that when subjected to scientific proof, they were shown to be ineffective. For example, for decades post-menopausal women took estrogen replacement. It was supposed to keep our bones strong, and strengthen out hearts. It was BELIEVED by practitioners to do this. When it was subjected to proof however, it was determined that the ONLY benefit to the replacement hormone was maintaining bone — and that there are safer ways to do that. Heart benefits were non-existant. And there was increased levels of stroke and breast cancer. That is only one example. There are others.
Whether or not an independent practitioner "believes" a treatment works, if it has not been subjected to OBJECTIVE studies, and been validated by more than one set of researchers, it is impossible to know whether or not it is effective. Acupuncture does indeed work, and has been proven to work, to block pain channels, to improve the chances that someone with a heroin addiction will kick the addiction; to improve the chances of women to have babies after in vitro procedures. All of these are non-life-threatening issues. But it’s effectiveness against hyperthyroidism–a life-threatening condition — is, as yet, unproven, as far as I know.
In my opinion, hyperthyroidism is much, much too dangerous to experiment with acupuncture and herbs when there are proven treatments, known to work, and work well to give the patient back their health. By all means, try it, and the herbs, ALONG with a proven treatment option. It undoubtedly cannot hurt. But it might hurt you mightily to only do acupunture.
in reply to: I Choose RAI I-131 #1063425Yes, the tunnel does end. Good luck with the eyes. I would recommend, though, that you talk over going off the steroids with your doctors. Make sure that you understand precisely why they were prescribed in your case — most of us don’t get them routinely prescribed. Make sure that you understand what the consequences are likely to be, with respect to your eyes. Itmay well be that you’ll be ok without them, but just don’t do this without a consult with your doctor.
Wishing you good health soon.
in reply to: TED AND PUFFY FACE #1063349I think you can also use that gel at night, while you sleep. I’ve been reading lately that it’s important to put eye gels or even serums on at night, to work on things while we sleep. I’m giving that a try, along with the same brand’s night cream. It has a scent to it, which normally I try to avoid (scents, that is), but I think it’s lavender, and it seems to help my sleep as well as my face.
in reply to: Its a boy!! #1063339Such great news! It’s made my day.
in reply to: Weight info please #1063354To add to one of Kimberly’s comments — yes, a good portion of the weight loss while hyperthyroid is "bad" weight loss: i.e. muscle and bone. Muscle burns lots more calories, even at rest, than other tissues do, so losing it lowers our metabolism. We cannot eat as much and not gain weight. When we regain normal, controlled levels of thyroid hormone the muscle starts to come back. This appears as weight gain (it weighs more than other tissues). This is GOOD weight to gain, because it raises our metabolism. I regained 15 pounds before my clothing started to feel tighter. I was exercising and eating properly, but I still regained weight. It was good weight. If you only look at the numbers on the scale you can miss this point: having appropriate amounts of muscle raise our metabolism, and help to keep us both strong, and slimmer than we would be without it.
I realize that weight issues are extremely frustrating — but the most important issue is your overall health. IS the treatment helping you to regain strenghth, stamina? Then you are much better off. Weight issues can be dealt with over time. But eliminating hyperthyroidism is the crucial first step to getting your health back.
I
in reply to: TED AND PUFFY FACE #1063343No, Susan, TED does not cause a puffy face. It can produce what appears to be soft tissue swelling in the eye area, but a puffy face, overall, is not something that is typically associated with it.
in reply to: Complete Thyroidectomy #1063365Hi, Ruby:
I am so glad to hear that you are feeling so much better!!
in reply to: Complete Thyroidectomy #1063361Yes, love2cook, you should plan on getting well again. Thankfully, there are medications to either control thyroid output, or provide us with a reasonable replacement to it if we have to have our thyroids removed.
As to the leg cramps — those should go away once your hormone levels are controlled again inthe normal zone. I’m not sure why they occur, but I, too, experienced severe cramping at one point in time. I took warm baths, and did lots of stretching which helped a bit, if not completely.
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