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in reply to: New and worried #1074310
Hi, glad you’re here! You’ve definitely found some people who understand, and for me that was very helpful, because the people in my life never did really understand how ill I felt or that Graves’ Disease is something serious. I’m not sure what it would take for your husband to understand this, but you can be certain he isn’t going to guess it on his own. One of the reasons our families tend to minimize our illness is probably because it’s painful for them to think of someone they love as being seriously ill, or to think that we could even die (which isn’t likely when we’re being treated of course). It’s just easier for them to believe that if the doctor takes care of this we’ll be okay pretty soon and they don’t need to worry too much.
Part of this depends on how well you can communicate with your husband in general about your needs from him, and about your fears and about how you feel. If possible, tell him how sick and how tired you feel, and that you need extra help and rest until you’re feeling better. It probably wouldn’t be out of line to say the doctor recommended it, and if your husband will come with you to doctor’s appointments to get that information first hand, that’s even better. There are some books on our recommended reading list (on the NGDF web page) that might help him understand what you’re going through as well. I don’t know how difficult it might be to get him to read them. Not every spouse is so sensitive and considerate that help and support are given without asking, though that would be nice. I hope you will ask.
Part of the problem is that the term "thyroid problem" is a commonly used statement in public knowledge with connotations of being a minor problem, so many people automatically assume that anything to do with the thyroid is no big deal. I ran in to that problem at work when a co-worker had a goiter (without thyroid imbalance) and went on Synthroid to shrink the goiter, while at the same time I was extremely hypothyroid after being severely hyperthyroid, and unable to function at all. The supervisor took it on himself to decide I had no right to be off work because the other guy had a thyroid problem too, and he was doing fine. The supervisor even scoffed at my doctor’s excuse.
Many people do find that communication with their families leads to better understanding and eventually the support that is needed. When that doesn’t happen, talking to others on this board can be a good second best. Just about everyone here does understand what you’re going through, and can encourage you that better days are ahead.
Best wishes
in reply to: PTU Induced Hepatitis #1074343Yes, many times we don’t get the same advice from different doctors, but fortunately each of us has the right to make the choice that suit us personally.
I’m glad to hear your liver has recovered, and if you decide to try the methimazole I wish you success. Have you asked your doctors what the chances are of permanent damage if you caught any problems right away? If that risk isn’t high, that’s on your side I would think.
When you talk with the surgeon I think you’ll find there are varying philosophies about how much of the thyroid to remove. Some surgeons want to remove as much as possible, and others like to leave enough that the patient has a chance to remain euthyroid. The disadvantage to that approach is that there are more treatment failures, which is the reason the other group of surgeons believes in "taking it all". As with any other treatment, a person can usually find a doctor who will do what the patient wishes.
Let us know what you find out. Best wishes,
in reply to: GD and stomach issues #1074469Hi Amy,
The T3 uptake test, or T3 Resin uptake, helps estimate the availability of thyroxin binding globulin (TBG). This is the protein that carries most of the T3 and T4 in the blood. The higher the level of TBG , the lower the value of T3RU. A higher T3RU value means less TBG is available, possibly as a result of hyperthyroidism.
A total T3 is a measure of all the T3 in the serum (blood).
A Free T3 is an estimate of the T3 in the serum that isn’t bound to proteins, and is therefore "free" and available to the body, which in the case of hyperthyroidism is the amount that will actually contribute to hyperthyroidism.
Each of these tests might have specific limitations that lead your son’s doctor to want the information from a different one at other blood drawings (you’d have to ask the rationale of that).
I’m really hoping he sees resolution of his stomach symptoms as his hyperthyroidism is controlled! It appears you have reason to be optimistic about that at this point. Do keep us updated!
in reply to: PTU Induced Hepatitis #1074341My thought on this is that your liver can’t be functioning at 100% after suffering hepatitis from the PTU, and so at best your liver may be more sensitive to the Tapazole. I think this is a case where following your endocrinologist’s recommendation would be wise.
Of course it’s a decision only you can make, but I agree with Bobbi’s advice to you. Either way, please let us know what you’re doing.
Best wishes,
in reply to: What took me so long? #1074502Russell, I can understand your reasons for being leery of having your thyroid levels get out of hand by going too long between tests.
Bobbi, you questioned the use of block and replace therapy for stabilizing levels, so I sent you some references showing that it is indeed used that way. For anyone else who is interested, that information consisted mostly of an article from the European Journal of Endocrinology discussing valid ways to use antithyroid drugs; whether to adjust the dose according to patient response (known as "titration") or whether using block and replace was still a valid way to use ATD therapy. The article concluded that block and replace had been prematurely discarded as a mainstream therapy, based on some faulty thinking (partly because doses high enough to cause significant side effects do not need to be used), and because it has significant advantages: namely that it’s easier to stabilize patients and keep them from becoming hypothyroid, which not only means fewer lab visits, but is important in patients with thyroid eye disease to keep from exacerbating the disease.
Bobbi also said in her post to Russell that "our doctors are the best source of information" regarding treatment choices. In an ideal world this would be true, and I don’t wish to undermine anyone’s therapy when I say that I’m not as idealistic about that as Bobbi is. I’ve encountered way too much lacking in that regard to support that statement 100%. I will say that our doctors are an important source, and certainly should always be consulted in any decisions. If we don’t agree with their philosophy we can get second opinions or change doctors.
There’s another important consideration. Perhaps for some people (maybe for Bobbi?) the medical perspective is the most important piece of advice in making a medical decision. For others it may not be. I want to know what’s going to happen from a human perspective (how the treatment choice will affect my day-to-day life, not simply my safety). For example, my doctor explained the three treatment choices to me and I understood them medically, but I had no idea at all what any of them would do to my life. I needed to talk to other people who had been through those treatments, but back in 1996 (when I was diagnosed) that wasn’t possible. I found this support board after my RAI had been done. This board was just starting up at that time.
I’ve weighed the evidence and what I saw back in 1996 and what I see now is that the reason most doctors recommend RAI to their patients is that it has the least chance of complications for most people, when all recommendations are followed (such as giving prednisone to patients with active eye disease). As far as I can tell, this safety factor is the only consideration many doctors are able to see. It’s a valid one, no doubt. (I wasn’t given prednisone in 1996 and had eye exacerbations, but that’s another issue entirely.)
But for me there are other considerations, such as how LONG my life will be disrupted by illness, and that’s extremely significant. I’m sure most patients would like to have the information if it’s possible to restore wellness sooner, even if that means deciding on increasing risk factors in certain areas. This is when I’d much rather talk to other patients than to hear what my doctor has to say. I want to hear from even the "outliers" as Bobbi calls them, to know about the range of possibilities. I want to hear from those who feel good and from those who don’t. The object isn’t to be afraid to proceed, but to make the decision fully informed.
For ME, preserving the body intact is also a worthy goal when it can be achieved without unacceptable risk (which of course will be different for each person). My doctor told me that replacement hormone was exactly the same hormone our own thyroids made, so I assumed there would be no difference in my health being hypothyroid and having a fully functioning thyroid. I wasn’t thinking about being stuck on whatever TSH a doctor thought was okay, whether or not that was really normal for me. I found that out rudely when my first endocrinologist left me with a TSH of 4 and a barely normal Free T4, and when I told him I felt awful he said it wasn’t my thyroid levels, but that women my age always had those complaints. (That was in the first year following RAI.) I got a new doctor.
That same doctor didn’t tell me about the possibility of it taking a year even to restore normal thyroid levels, nor did he tell me that a significant number of hypothyroid patients continue to feel unwell in spite of normal thyroid levels, partly because he obviously attributed their complaints to being women. These are not "outlier" issues, but ARE problems I ended up experiencing. (My point: relying on one’s doctor for information sometimes results in disappointments of this nature.)
When people ask me about RAI I try to be fair and tell them that many people have a fairly smooth time and do well later on. Still, I’ve talked to far too many people who echo my own experience to believe that I’m an "outlier", if that is what the intention is here.
in reply to: GD and stomach issues #1074466I remember talking to a young woman with Graves’ whose main symptom was nausea with vomiting. She had major weight loss as well. For her, this improved when her thyroid levels stabilized.
There’s no way to know if your son’s nausea is a result of his thyroid levels or if he has some other underlying problem. I hope his doctors will keep looking for other problems to be on the safe side, and if those are ruled out there’s a likelihood that your son will feel better once he’s been on ATDs long enough to have some healing time.
How old is your son?
Best wishes,
in reply to: What took me so long? #1074500Russell, my TSH tests are taken fasting, and I take my replacement hormone consistently separated from food and other meds, so there should be nothing I’m doing to cause fluctuations. It could be that my TBII antibodies (which were still strongly positive when last tested) are fluctuating, and causing the difference.
I do think the block and replace would be worth a try if you want to find out whether having stable levels is going to be the answer to how you’re feeling. That would put you in a better position to decide whether you want to be on replacement hormone as a permanent solution, following either surgery or RAI. Once your own thyroid production was totally shut down with a higher dose of Tapazole, you’d be dependent on thyroid replacement, just as you would with your thyroid removed.
If you already have your mind made up that you’re ready to do surgery and are looking for support, I can assure you that I’ve talked to many people who’ve had that done with a wonderful outcome and who are really happy with that choice. I haven’t met anyone yet who had a serious complication, though I’m sure they’re out there. I’ve known several who had thyroid tissue grow back a few years down the road, and who then needed another treatment. That’s not the usual outcome, but you should know that it can happen. Talk to your surgeon about the frequency if you’re concerned, since I don’t know the percentages.
After fifteen years on antithyroid drug therapy, the likelihood of a remission no longer seems to be a realistic goal of staying with that treatment, so it seems that if management is ruling your life and still isn’t bringing you the kind of health you desire, making another choice isn’t a bad risk at this point. At least that’s what I see about your situation, in case it helps.
Best wishes,
in reply to: Antibodies after RAI? #1074373In order for the antibodies to cause hyperthyroidism in the fetus, the mother has to have an exceptionally high antibody level. RAI can cause a temporary rise in antibody levels in some patients that is highest in the first six months to a year following the RAI, but in many patients remains slightly elevated even five years later (though not high enough to affect the baby). One of the reasons doctors recommend women wait six months to a year following RAI to become pregnant is to give these antibodies a chance to level out.
So yes, if RAI is recent (within a year) and a woman wants to become pregnant, definitely discuss the question of an antibody test with your endocrinologist and OB/GYN. Although it’s relatively uncommon for a baby to be born hyperthyroid because of the mother’s antibodies, it happens often enough that it’s not a medical rarity. Mostly it occurs when a mother is untreated than when a mother has high antibodies following RAI, so I don’t think anyone needs to worry very much about this happening in that case.
in reply to: Orbital Decompression Surgery #1074391Thank you so much for sharing this! I’m in tears after watching this, because I know so many brave people on this board who have been through what Patrick has, and it’s difficult to see someone so young have to deal with this too. At the same time, it makes me feel good to see him being helped with surgery. I’m sure your efforts in making this available will give hope to those who are still in the early stages of ophthalmopathy and fearful of the future. Please welcome Patrick to post on the board as well.
in reply to: What took me so long? #1074495This reply is in response to Russell, wanting feedback on whether you might be better off having a thyroidectomy rather than remaining on a small amount of tapazole for long-term control of hyperthyroidism.
You said you are taking from 2-5 mg of tapazole and your TSH is fluctuating between 2.0 and 0.6, which is really not a huge change, so I am not sure how you’d do much better. I don’t know for what reason you change your tapazole dose, but if you’ve been changing the dose on your own based on how you feel, that could be a factor in how you’re doing. How we feel may be, but isn’t always a reliable indicator of thyroid status. What does your doctor have to say about this?
Mainly I want to caution you that if you choose to remove your thyroid, the reasoning that it will make your thyroid levels more stable may not be sound. I am on replacement hormone following RAI and have had readings more different than yours within the space of a week. I don’t know if the reason has to do with time of day, antibody levels, or what; but my TSH readings aren’t entirely consistent. You will probably find that yours won’t be either, regardless of treatment choice.
You might want to explore with your doctor whether the colitis or some other condition is a factor in your weight loss. We get used to thinking our thyroid condition is responsible for everything, and it’s easy to miss other conditions we should be paying attention to.
One possible way to test whether your anxiety and weight loss are truly caused by your levels dropping too low part of the time might be to ask your doctor to try you on block and replace therapy, to stabilize you at a higher level. This would mean giving you a much higher dose of Tapazole to shut down your production completely, and then putting you on thyroid replacement hormone to bring your levels back to normal. The only disadvantage to this is that you’re more likely to have side effects to Tapazole at the higher doses. However, if you felt better that way, it might indicate that you might be happier making a definitive choice. Some doctors like to use it because it’s easier to keep thyroid levels stable, so it might be helpful in your case.
Doing that is the closest thing I know to having that "crystal ball" Ski referred to. If you’re interested and your doctor isn’t familiar with this as a valid treatment, let me know and I can send you something that will help.
in reply to: Update with questions????? #1075062Regarding a low TSH with normal thyroid levels:
Scientists in the Netherlands (Brokken,Wiersinga, & Prummel) discovered that in Graves’ Disease, TBII antibodies suppress TSH secretion independently of thyroid levels, even when thyroid levels have returned to normal. Furthermore, they found that patients who are positive for TBII antibodies have a lower TSH following treatment for similar Free T3 and Free T4 levels than do patients with negative TBII levels, and that the TSH correlated only with TBII titres and not with Free T3 or Free T4 levels.
Many doctors aren’t aware of this. For this reason it’s important for patients to be seen by an endocrinologist who is familiar with the latest research. The bottom line is that for patients with Graves’ Disease, the TSH isn’t always a reliable indicator of thyroid hormone status.
Of possible interest to RAI patients: a recent study has shown that RAI causes thyroid stimulating antibodies (including TBII) to elevate, and that they remain slightly elevated even five years following treatment. In comparison, the antibody levels of patients who had surgery or were treated with antithyroid drugs usually return to normal. There are several possible implications of this. One is a possible explanation for why the eye disease develops or worsens temporarily in some RAI patients. Another is that TSH levels in some RAI patients might be lower than they should be long after treatment, leading to a possibility of slightly inadequate thyroid replacement; a possible explanation for why some patients still feel hypo with a normal TSH?
About Armour thyroid and T3 supplementation:
Many patients on thyroid replacement hormone still have some of their own thyroid still functioning and therefore are still receiving adequate T3. Most of the studies that have been done recently have concluded that patients don’t need T3 supplementation, but so far none of these studies have been done exclusively on patients who have virtually no thyroid tissue remaining. I’d like to see if the results of the studies change if they separate the patient groups. I hope future studies do this, and make another important change. In the studies done so far, T3 was given once a day, which will give the patient too much T3 initially and the patient will run out the rest of the day (Bobbi explained the half life of T3 in an earlier post). Until time-release technology for T3 can be perfected, T3 studies should be done with split-dose therapy, giving the T3 three times per day. That’s the easiest way to keep T3 levels constant in the serum (blood).
I take Armour thyroid, and split it into three daily doses. Since it’s difficult enough to remember one pill daily, I have to put it in a pill box that has room for three daily pills, or I’d never remember for certain if I took each dose or not. It’s very difficult to find a time during each day to separate pill times from meals that might inhibit absorption, but I do my best.
My thyroid is pretty much gone. How does one know? It’s difficult. One way to tell is by how much thyroid replacement you’re taking, but that too can vary from person to person. Still, I have a friend who thinks she has no thyroid left but she’s only on 50 mcg Synthroid, so I know she’s wrong about that. I’m taking the equivalent of 225 mcg Synthroid, and she and I are about the same size. I’m 5’7" and about 135. My guess is that unless a person is on at least 175-200 mcg of T4, a reasonable amount of thyroid remains and is functioning still.
Recent studies have shown that most people on thyroid replacement have normal T3 levels on T4 supplementation alone. I’m one who didn’t, even though my Free T4 was above normal, and being on Armour made a world of difference in how I felt. It’s a good idea to make certain your T3 levels really need supplementation before you worry about getting it done, mainly because the risks of too much T3 all at once are real. Taking T3 in a pill doesn’t allow it to be distributed gradually the way your own thyroid can do. It’s different with T4, which has a long half-life and can be stored in the organs for a week or so and used as needed. One study was done showing that while not ideal, it’s even possible to give patients T4 replacement all in a weekly dose.
In my opinion, the fact that replacing T4 and T3 in a pill can’t be done in the same manner our healthy thyroid was able to do is central to the question that was originally being discussed in this thread. It’s not just that doctors can’t replace the substances that a healthy thyroid used to produce, because they can. The trouble is, they can’t replace it in the same manner, or when it’s needed, or in an amount that our body knows is correct for us. Once our thyroid is gone, we’re at the mercy of whatever TSH number our particular endocrinologist decides is his favorite number, regardless of what our body used to find optimum. At that, it will be a number that can’t change for changing conditions. So while I’m thankful we have the treatments we do have, I don’t think that the idea of destroying a thyroid "because hypothyroidism is easily treatable" is something that should be done lightly, as if taking this T4 pill was exactly the same thing as our thyroid gland.
Yes, we can be for the most part healthy again, but scores of hypothyroid patients have ongoing symptoms, for which the cause hasn’t been determined. Unless a better answer is found, some aspect of the inadequacy of replacement hormone has to remain the major suspect. Researchers are still debating all these issues. Many have hard set opinions one way or another. A prominent thyroid researcher actually told me the reason I felt better on T3 because it was like taking speed. That answer left me speechless! How does bringing my T3 into normal ranges become taking speed when his thyroid producing T3 is not? I could understand that view if I was raising my T3 above normal, but I fail to see the problem with wanting to have a normal level and feel like myself again!
The bottom line is that all the current studies show there is no role for T3 supplementation, so most endos are moving away from this. Current thought is that most people will have a normal Free T3 level if their Free T4 level is brought high enough, and that it’s acceptable for it to be brought slightly above normal if necessary to bring Free T3 high enough as long as the TSH doesn’t go too low. This is considered safer for the patient than risking spikes of T3 that are way too high, with once-daily doses of T3 supplementation, which can be dangerous for the heart.
T1 and T2 are produced when iodine molecules are removed from T3, and as such if the body had use for them, they’d still be available with T4 supplementation. As I understand it, most researchers believe there is no use for them.
Bobbi has discussed Calcitonin, but I’d like to add a few things:
Its actions are to work against parathyroid hormone to:
1) Regulate bone mineral metabolism (protection against calcium loss). It is currently used as a treatment for osteoporosis.
2) Regulate serum (blood) calcium level
3) Act as a satiety hormone: May have CNS (central nervous system) action involving the regulation of feeding and appetite
Still, the way calcitonin works in the human body is much less well-understood than is the way it works in animals, and we seem to do well without it.
My personal view is that there’s a reason for everything (it wasn’t that long ago when doctors believed the tonsils weren’t needed). The miraculous way our bodies function has no substitute.
For all these reasons, I really think it’s reasonable for people who want to try antithyroid drug therapy to give that a go before doing something more permanent, as long as there isn’t a medical reason not to. It seems that an overwhelming number of doctors in the US now are convinced that RAI is the way to go, and they steer people in that direction many times without giving much serious consideration to other options. Reasons I hear for that include the justification that many Graves’ patients will become hypothyroid eventually anyway, but becoming hypothyroid is a lot different than destroying an entire gland. More importantly, many patients will NOT become hypothyroid, and will live their lives with normal thyroid function. Others will live many more years before relapsing.
Maybe some doctors don’t want to take the time to explain to their patients the implications of all the treatment choices. That makes it easier to recommend RAI to all patients. There’s no question that some patients might have a difficult time with compliance with antithyroid drugs, and that not only might be dangerous, but won’t give the desired results.
I think an important function of the Graves’ Disease Foundation is to help people learn about ALL the options, and to know the entire range of implications contained in those options. We all have different wants, needs, and plans going on, and not all of us are in the same life stage. I love it that we can learn from what others have actually experienced, and not have to rely only on the particular prejudice of the endo we happened to be referred to. (I guarantee you that even they disagree on these issues a lot.) So in most cases it’s fine to make up our own minds about treatment issues and then find a doctor who will support that.
in reply to: New to Blog, RAI, TED and Steroids #1074481Hi Rob, and welcome!
Another comment about being on steroids, which will no doubt be prednisolone of some description. I’ve taken it a number of times, once even for a month in a pretty high dose, and didn’t ever have any of the feared side effects. The appetite does increase, but if you are aware that this doesn’t actually mean your body needs more food and are careful to eat your normal diet, the weight gain is not inevitable. It can cause a good increase in mood and energy at first (along with difficulty sleeping). In fact, I remember being on it once after an eye surgery, and being up running around singing about how happy I felt, when I should have been in bed resting.
Most of the really bad side effects (moon face, weight gain, acne, diabetes, glaucoma, cataracts, osteoporosis, etc.) occur when a person takes these drugs for several months or longer You shouldn’t have to worry too much about most of these problems for the length of time you’ll be on it to protect your eyes from the effects of RAI.
You’ll taper slowly off the drug, and when you go completely off it’s possible to feel depressed for a day or so while your adrenal glands are kicking in making more cortisol again. That’s good to know ahead of time so you don’t think there is something wrong if you’re crying for no reason. (I thought it was actually good to discover why people with a physiological depression can’t just talk themselves out of it).
Good luck with your treatment.
Dianne W
in reply to: Surgery, Change of heart :( #1074560Hi Hopeful!
My heart is with you as you agonize over this decision. It would be so nice if you could "try on" these treatments and see what would happen before you had to do one for real and then live with the results. But you know what? A study has shown that most patients end up pretty satisfied with the treatment chosen, no matter which one it is. I think that once you make your decision you will feel a lot better, and that your outcome will be good either way. It’s just making that decision that’s giving you trouble.
I had radioactive iodine and it didn’t end up being a very easy road for me, mainly because I got so much more hyperthyroid at first and then became badly hypothyroid, and went through a long process where the doctor didn’t keep up with giving me enough replacement hormone for various reasons. I’ve talked to people who had surgery who had such an easy time with the whole Graves’ Disease thing in comparison that they truly have no idea why I make such a fuss about it. On the other hand, I know people who had RAI who are pleased with their choice, so I realize some people have an experience better than mine.
I chose RAI because I was a single working mom and didn’t want to take time off work for surgery, and didn’t want to take medicines (ATDs) that I didn’t understand, or to keep having blood tests to monitor how they were working. What a laugh all that is now! Because of the RAI I was so unwell that I lost more time from work than I’d have ever missed from the surgery, and I’ve been on more drugs than I would have ever used by taking antithyroid drugs.
I know that sounds discouraging. I’m only telling you this because it’s something I would really have liked to know was possible when I was making my decisions.
My difficulties following RAI can mostly be attributed to fluctuating thyroid levels, some of which could be avoided by a larger RAI dose and better medical followup. But some of the fluctuating levels go along with this treatment choice, for some patients more than others, and it’s impossible to predict ahead of time how long it will take. Patients should be told to expect this, because it’s not usually a comfortable time.
I had RAI thinking that I would be getting better in a few months, and that wasn’t a fair thing for the doctor to lead me to believe. With surgery that would have been realistic, but not with RAI. RAI is very safe, and very effective, but it’s not necessarily fast or easy on the patient.
Surgery is very safe in this day and age. Mortality rates are down to near zero, and the most serious complication can be infection, as with most surgeries. When vocal cord and parathyroid damage do occur, they are often minor and/or temporary. It’s much more rare to have severe hoarseness or the permanent need to take calcium, though that can happen. With experienced surgeons who perform this surgery a lot, it’s rare. If you’ve listened to what your surgeon told you about your particular case, you have a good sense about how your case compares to the normal case. It’s a decision only you can make.
It’s really a shame that there isn’t a choice we have that doesn’t have a down side. Still, I think once you make this decision you’re going to be happy.
All my best,
Dianne W
in reply to: Allergic to PTU…Headed for RAI…What to Expect? #1074456Hi!
I’m sorry about your reaction to PTU when things were going well. As you say, a month would be pretty soon to see a remission, but you can always hope that you are lucky.
If you decide to have RAI you may want to discuss the dose with your radiologist before making your final plans. There are different philosophies on how to approach the destruction of thyroid tissue. Ten-fifteen years ago it was more popular to aim to leave the patient "euthyroid" (normal thyroid function), but doctors have found that this is seldom achieved and can’t be predicted by the dose given. They’ve found that giving the lower doses that aim for euthyroidism more often result in treatment failures (requiring a second or third RAI), and that even when euthyroidism is achieved, it only lasts a few years. Studies show that regardless of dose given, nearly all patients who had RAI are hypothyroid within ten years. For that reason, these days it’s more popular to give slightly higher doses of RAI, aiming for a more total destruction of the thyroid, though keep in mind that the doses given for Graves’ Disease aren’t high enough to destroy the entire gland.
There are other advantages to having a higher dose of RAI besides fewer treatment failures. It results in faster resolution of hyperthyroidism, and the patient can avoid months or years of constant adjustments in thyroid hormone replacement adjustments, caused by levels that keep dropping from a gradually dying thyroid gland. I went through that for four years following my RAI. That was caused by receiving a relatively small dose of RAI (10 milicuries).
According to Dr. McIver from Mayo Clinic (a thyroid cancer expert) who spoke at the Los Angeles NGDF conference one year, another advantage of a higher dose is that the lower doses leave damaged tissue behind, which can lose the ability to complete a process known as "apoptosis", or programmed cell death, when its cells begin to mutate into cancerous form. He suggested that this is the reason RAI patients have been found in some studies to have a slightly higher rate of thyroid cancer, but says this higher risk can be eliminated by destroying the gland more completely.
Many people feel absolutely no effects from taking the RAI. Many others feel a small amount of sore neck or throat a few days afterward, but not enough that it would interfere with a vacation. This is the damaged thyroid tissue swelling up, and in some cases it dumps excess thyroid hormone into the bloodstream, which can result in a temporary worsening of symptoms. Occasionally the worsening can be severe, so you should always be prepared with an emergency number just in case. Thyroid storm is a rare (but real) complication. If you do have a worsening of symptoms it could be toward the end of your week away, or about the time you get back.
When considering RAI exposure you won’t want to forget your husband. My doctor told me that the risk I should consider was a factor both how close someone was and the amount of time they were close to me. Based on that, for a significant other to be across the room for a couple of hours was no problem, but to spend all night in the same bed wasn’t a good idea. He told me I could work without endangering anyone since I didn’t work closer than a few feet and that was only for two hours and the rest of the day I was around completely different people. Had I worked a few feet from those same people all day, I’d have had to stay home.
As it turned out, about a week after my RAI, my thyroid did a huge dumping of hormone, and for two months I was more hyperthyroid than I’d ever been. At three months I suddenly became hypothyroid. As I understand it, with a larger dose people become hypothyroid faster than three months.
Do you have any signs of eye disease? If so, talk to your doctor about whether taking Prednisone is appropriate for you to keep it from worsening. If you don’t, it’s possible that RAI can cause you to have some mild eye changes, but most of the time they’re not permanent.
Surgery is another option, and if you can find an excellent surgeon it can be a really good choice. People I’ve known who had surgery get well very quickly and have an easy time adjusting replacement hormone, plus there are no worries about staying away from people or questions about other possible health effects.
Good luck with your decisions, and I hope all goes well!
Dianne W
in reply to: Hello Everyone #1075108Hi Zanymom,
I’d love to answer the questions about your blood tests, but that’s beyond the scope of this board. I’ll try to explain the important numbers though. The TSH is thyroid stimulating hormone, which is a hormone from the pituitary gland that in normal circumstances tells the thyroid either to produce more hormone or to produce less. A typical "normal range" might be something like (0.5-4.5), and someone who is hyperthyroid might have a TSH of something like 0.002 because the hypothalamus-pituitary mechanism has sensed that there’s too much thyroid hormone and has shut down production of TSH. I want to stress that I gave those numbers as examples ONLY. Each lab has its own reference range, and the only meaning "normal" has is within the range of your lab, because scales are different as well as the reference population.
The active thyroid hormone is T3, but T4 circulates in the blood and is stored in body tissues where a molecule of iodine can be removed and it can be turned into T3 as needed. A healthy thyroid produces mostly T4, but also some T3.
When you have Graves’ Disease, thyroid hormone production is no longer driven by TSH, but by TSI, or thyroid stimulating immunoglobulins (antibodies), which attach to both the thyroid and to the pituitary gland, mimicking the action of TSH. These antibodies not only cause production of excess thyroid hormone, but can cause the pituitary gland to stop making TSH even when the patient has been treated and thyroid levels are normal again. Since doctors usually use the TSH reading to tell whether a patient has a proper amount of thyroid hormone, that can make it difficult to tell for patients with Graves’ Disease. For that reason it’s important to know the Free T4 and Free T3 levels.
Free T4 and Free T3 levels are different from Total T4 and Total T3 levels in that they measure the amounts of those hormones in the blood that aren’t bound to proteins. Any amounts that are bound to proteins are essentially inactive in the body.
It’s a good idea to make a habit of asking for copies of your blood tests, and there you will find a "reference range" for each value of the tests your doctor orders. You’ll probably always find a TSH, and either a total or Free T4 and usually T3 also. There are many other possible tests your doctor might order, but these are the most important for you to know to begin with.
Radioactive iodine is a permanent treatment for destroying the thyroid, and once that’s done you will be hypothyroid the rest of your life and dependent on thyroid replacement hormone. Most doctors in the U.S. recommend this treatment, because it’s safe and effective. It’s not the only reasonable choice there is, however. In fact, many people choose to treat with antithyroid drugs (PTU or Methimazole) because it gives them a chance to live the rest of their lives with a functioning thyroid gland. Somewhere around 15-30% of patients (depending on whose numbers they are) will have a permanent remission (defined as no return of the disease when antithyroid drugs are stopped). Others choose to treat long-term with antithyroid drugs even when they don’t have a lasting remission. In many cases the thyroid will gradually become underactive over time due to the effect of other kinds of antibodies that become more numerous.
You asked how long it takes to notice the effects of PTU. It sounds like you are already noticing some effects, and that’s probably typical. By 4-6 weeks most people are beginning to feel noticeably better. What you want to avoid now is becoming hypothyroid, so I hope your doctor will monitor that carefully so that doesn’t happen.
The point I’m trying to make is that you don’t need to feel pressured to have RAI. It’s a choice you have for the future if you’re not happy with your current treatment and if you’re able to afford it. The PTU is a perfectly good treatment, and when you’ve been on it long enough to feel well, and if you’re properly managed, you will have a chance to heal from this disease. Antithyroid drugs have an advantage over some of the other treatments in that they actually help bring down the levels of antibodies that cause Graves’ Disease. Researchers have been working for years to discover the mechanisms behind this because they think antithyroid drugs may be of use in other diseases. They know now that part of the effect is simply from lowering thyroid levels, but there is a separate immunomodulatory effect as well. I know many people around the country who were treated with antithyroid drugs 10-12 years ago and are still doing well. You don’t necessarily ever have to have RAI if you decide in time that you’re doing well enough on PTU.
I want to say also that I’m familiar with Charcot-Marie-Tooth Disease, as it’s a diagnosis that was considered for me. I also have a nasty sensory and motor neuropathy so I know about the pain, cramping and muscle weakness, etc. I have to sleep with my feet out of the bed because they can’t take the pressure of the mattress or covers. Send me an email if you want to talk, and best wishes with the Graves’ treatment decisions!
Dianne W
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