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in reply to: Hair loss on 88mcg levothyroxine? #1176236
When we are hypothyroid, we lose more hair than normal. When we swing from hyper to hypo to (hopefully) more normal, we lose hair, as well. It does normalize over time. It may have nothing to do with the dose of replacement hormone you are on. The only thing to do is be patient, wait until your next set of blood tests, and then see what the results are.
in reply to: Frustrated with doc #1176206I do indeed understand, WWW12. My Graves was not diagnosed (even with definitive blood work) by a doctor who considered me prone to anxiety issues, so she didn’t look at it. !! (She admitted it, later.) And, worse, I lost a baby at 5 months gestation by a doctor who refused to consider that the contractions I was experiencing were “working” contractions. So, I do understand. On the other hand, as a kid, I was grounded for doing something I had not done, because my parents listened to someone other than me. It rankled enough that I truly try to put the blame for things squarely on the head of whoever did it.
in reply to: Paralyzed by anxiety #1176215I’m sorry you’re having these added issues, Amy. Going through hormonal changes of any kind is the pits. I found that repeating the serenity prayer like a mantra helped a bit when I was where you are now. It truly helps to know what you can and cannot control, and then focus on the can part of things, not the cannot.
Wishing you a better day today.
in reply to: (Link Removed) #1176227Just fyi: there is a mix of fact and opinion in this piece. So do not take all of it as “fact.” Also, it is undated, and given some of the information in it, I wonder if it is currently relevent. It might be, but I suspect it is “old.” Kimberly might have a better idea than I do.
in reply to: Against medical advice?? ugh! #1176193A reminder, STacy, that the folks on this forum are NOT doctors. Your options about treatment for your Graves should ONLY come from your doctors. And if you do not agree with your own doctors, please find another doctor and get a second opinion.
in reply to: Frustrated with doc #1176204One thing to try to be objective about is “who dropped the ball.” You did not get a call about those lab results, yes. But it may not have been the doctor’s fault. You are basing at least some of your opinions on guesswork. (“He never planned to call me….” apparently sees no sense of urgency…” “etc., etc.) You do not know any of this. It SEEMS that way, yes. But unless you have talked with the doctor, you do not know who goofed about not calling you. I have a very good endo — a caring doctor. Her current staff is horrid. They don’t call back, etc. or get me lab results in a timely fashion even when I know the doctor has instructed them to do so. They forget, get distracted, whatever. I had to get my most recent lab results (which were fine, but I’d asked for them) until another doctor called for the results. I will tell the doctor when next I see her. She deserves to know the chapter and verse. And, she is ultimately responsible for her staff. But it is not her fault if they mess up and she does not know about it. It is only her fault if they mess up and she DOES know about it.
I would recommend going to the appointment and talking with the doctor, calmly, about your frustrations, your financial situation, and how best to coordinate tests and appointments with him. Only then will you be sure that your doctor is the individual responsible for the snafus and inconveniences to you.
in reply to: Question if my daughter has Graves #1176179Being hyperthyroid is what makes us ill with Graves, and blood tests for thyroid levels are the main, definitive part of the process. We can get the eye disease without our thyroid levels being off, but the symptoms you are describing have more to do with hyperthyroid suspicions than with the eye disease.
I was thinking much the same thing as you, Naisly, until I reread the post. Sleeping in fits and starts is much more a sign of too much thyroid hormone than it is too little. Whenever I’ve been even slightly hypo, I can sleep like the dead. Just fyi……
Hi, rant, and welcome to the board.
Yes, we do get well again. That’s the first thing to keep in mind. Between the various treatment options (antithyroid meds or removal of the thyroid via surgery or RAI) we do regain our health.
Second, though, is that it takes time. It is very common to assume that because we’re taking a medication, that we should start feeling well pretty quickly. No. I find it useful to think in terms of hurricanes (something I’m all too familiar with). Hyperthyroidism is like a hurricane wind. Just because the wind goes away (with removal of the thyroid or medications) that does not mean that there isn’t significant damage left behind. It takes time for the body to rebuild, to undo the damage that being hyper caused. To “heal” in other words.
Third, the amount of medication that we take, has to be finely tuned. The first dose is part guess on the doctor’s part. This is inevitable. How each patient responds to the medication (whether it is antithyroid med or replacement hormone) is different, and it needs to be checked with blood tests after a reasonable waiting period, before changing it. The blood test results are more conclusive after a period of about six weeks or so, than they might be prior to that. So, we have to be “somewhat” patient. It is likely that the dose will be changed with the results of the next blood work. You can expect that. Once the dose of methimazole he’s on has been evaluated, the next dose (if there is a change) would be more finely tuned to his needs.
And, yes, the fatigue is truly debilitating. You might see if he is willing to try using ear plugs for sleep. I began using them when I was waking up every couple of hours when I had too much thyroid hormone. It blocks the slight noises that would wake me (snoring for example, or a siren going by, etc.) The beta blocker should help with the sleep issues a bit, as well.
As for pushing for a quicker appointment — as I said, it is helpful to wait until the blood test results stand a chance of showing the true effects of the dose he is taking. But after a couple of months, it is not necessarily unreasonable to ask the endo for an earlier blood test, should there still be very significant issues going on.
Hi, Enid, and welcome to our board. I know you will find lots of supportive folks here.
A word of caution about the internet: there’s a lot of really bad information out here. It can make you crazy when you are trying to navigate the pros and cons of treatment options. Try very hard to use medically wise sites….i.e. the type that are recommended links from here. We work with doctors to make sure that the information that folks get is at least reasonably reliable. And, you need to be able to filter fact from opinion on boards like ours. If an opinion is offered, fine. But check it with your doctor rather than treating it as “fact.” Your doctor is your first line of defense for good opinions.
I’ve been here a long time. I was diagnosed in 1996, and took PTU for a couple of months or so, before deciding to do RAI. I’ve been healthy ever since thyroid-wise. I’ve seen people come and go who have done all of the treatment options successfully. The folks I’ve seen in these years who have not done well have typically been people who have not listened to the medical professionals, or who were diagnosed too late (after the hyperthyroid condition had damaged their hearts, etc.)
I understand your aversion to taking the drugs because I am very much the same. That was one of the reasons I chose to remove my thyroid rather than continue on the PTU. So, perhaps it would help you to think in “slightly” different terms about the decision facing you. That “slight” difference is that you have a choice, and that you are, in fact, making your own choice. (I know—your real choice would be not to have Graves in the first place, but we’re dealing with reality here and you don’t have a choice about that.) But given the Graves’ reality, you DO have choices available to you, and they all offer a very reasonable possibility for good health. There is a good reason — for your baby’s sake — to choose to take PTU for the first trimester. Yes, the data on PTU has shown some truly serious liver issues is a very small number of people. Our doctors prefer to use options that offer the least risk medically, so PTU has suddenly fallen off the map as a treatment option of choice based on the accumulated data about it. But during that first trimester, it is still the antithyroid med of choice.
But you do have other choices as well — although I’m assuming you have chosen not to consider either surgical removal of your thyroid or RAI. But those ARE reasonable choices for you to consider. Being on replacement hormone carries none of the risks to the baby or you that being on the antithyroid meds does.
So, the “slight” difference I’m suggesting is for you to focus on the fact that you have choices that YOU are making. And that may make it easier for you to live with the choice that you ultimately make.
in reply to: on methimazole.a.month..too.soon.to.lower? #1176121It can be very difficult to determine causation (of the rash) without eliminating possible sources. And, the problem with allergic reactions is that they tend to grow, not stabilize, over time. Also, there might be other allergic things going on inside the body, side-effect-wise, that you cannot see, that could be more serious.
Have you actually seen the endo on call? Or has it all been handled via phone calls? It might help to actually be seen by a doctor. This time of year, that can be extremely difficult. If you haven’t been seen and cannot be seen in a timely fashion, can you take a decent photo of the rash problem and get it to your endo’s nurse, so that he/she can convey it to either the endo on call, or your endo.
As for cutting the dose, temporarily, I think you need to follow the doctor’s instructions, barring other possible approaches (like the ones mentioned above). As for the PTU, many people over the years have taken it and had their symptoms controlled. Side effect issues are similar, but the drug is a different chemical from methimazole so sometimes people tolerate it who cannot tolerate methimazole. The problem with PTU, however, is that significant liver damage issues have shown up in “some” patients, (I don’t ‘know what percentage) and as a result endos are relying on it less than they used to. My own endo will no longer prescribe it, she tells me, unless it is for a pregnant woman in the first trimester of the pregnancy. (Methimazole…during that specific period…can cause scalp issues in the baby, apparently — i.e. birth defects…who knew?)
I know this type of situation is tremendously upsetting, StacyA. I’m sorry the treatment didn’t go more smoothly for you.
in reply to: Starting PTU today or tomorrow #1175848I took PTU long ago — briefly. Unlike methimazole, it has a very short life span in the body, so I found that I needed to be rigorous about taking it at the specifically prescribed times. I.e., in my case, I was on several pills every eight hours. So I needed to take them every eight hours. Not, as I do with other “every eight hour” meds like antibiotics, where I might have to go nine hours overnight or something. It added to my annoyance factor with the med.
in reply to: new to hyperthyrodism and graves disease #1176026Hi, applegreen:
Blood tests which show elevated levels of thyroid hormone are a definitive indicator of “hyperthyroidism.” It does not matter what the cause is at this point in time; it needs to be treated. Inasmuch as your gp prescribed a medication which will interfere with the thyroid’s ability to make new hormone, taking the med, while waiting for an endo (if that is what you choose to do) is a good idea.
in reply to: Going to get RAI in a few minutes #1175981Shaylee–
As thyroid cells die out, they release any stored hormone they contain. This causes us to be more hyper than normal for a while after RAI. So anxiety and palpitations are not uncommon. The thing to try to keep in mind is that the most potent form of thyroid hormone has a half-life of less than one day, so it’s effects dissipate fairly quickly. T4, which has aslightly longer half-life (about one week), takes a bit longer. But the damaged thyroid cells are not making “new” hormone, so, again, the effects of the released hormone are limited in time.
I do hope you are feeling better soon.
in reply to: Going to get RAI in a few minutes #1175967Good luck, Shaylee.
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