I was diagnosed two years ago with Graves Disease, put on PTU and stopped taking it one month later from chest pains. Now two years later, three doctors later, I am on Methimazole. My thyroid levels were extremely high, not in the point ranges, they were in the thousands. After 45 days on Methimazole, I have gained 12 pounds and still climbing, if I eat any less, I may as well just not eat at all. Why is this and is anyone else going through the same thing, and how do I stop this weight gain without avoiding all eating? Am very unhappy about the weight gain. Can someone please advise?
Anti-thyroid meds (such as Tapazole, Methimazole, PTU, Carbimazole) are typically started at a large dose. Normal starting dose is 30mg a day (300mg a day for PTU). As soon as the Free T4 and Free T3 levels move into the normal range, then the dosage should be reduced.
Unfortunately MANY doctors do not reduce the dose when they should because they are dosing the patient based on the TSH result. You should NEVER be dosed based on TSH because the TSH will remain suppressed (and out of range) for a very long time after being hyperthryoid.
Patients on anti-thyroid meds should be getting new labs done about every 4 weeks until their dosage is lowered to a "maintenance level". Typical maintenance doses are 10mg or less per day.
If the anti-thyroid medication dosage is not lowered when the FT4 and FT3 hit the normal range then the patient will become HYPOthyroid. Hypothyroidism typically causes weight gain (though roughly 20% of hypers gain weight too).
Once thyroid hormone levels are normalized and stable then your metabolism is working properly and you can lose any weight you have gained.
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.
If youve lost weight due to the hypert then youve lost muscle which is bad putting weight on when starting treatment shows things are improving and the treatment is working,all l can suggest is you eat healthy lve put weight on but lm not up to what l used to be (thank **** was about a stone overweight originally) good luck
Niecsey, thanks for the input. I will have to look around for some food types. Have 4x12 abdominal gotex inside from massive hernia repair almost four years ago, a month after colon surgery, had lost 62 lbs from that operation, but did hernia repair before I had a chance to regain some of my old weight, now am told I must maintain a certain weight, maximum gain no more than 10 lbs, to avoid ripping this gotex. Now stuck between rock and hard spot cause am 15 lbs over my maintanence weight and thing inside is pulling tight, very uncomfortable, some real discomfort trying to get a decent position to sleep in. Scared of tearing that now. Told no more abdominal operations. So what's a person to do. Gonna gain, but not supposed to, try not to but can't help doing so, no more operations but tear my guts apart. Told the endo specialist this, he has all my paperwork and says he must get this under control first, then work on setting my med levels. But heck by then I could be tore apart inside. 45 days later and feeling it. Sorry, my husband Mr. Concerned, doesn't listen and have no one to talk to about this stuff. I sometimes wish this was happening to him so he would know just what is going on and how I am feeling. It was hard enough getting used to and learning about Graves Disease, and all he can say is "you are using that as an excuse". Thanks for listening. Dyanna
K9Mom, still not understanding the levels, FT4 was in 2800's, FT3 was in the 3400's, and then on the report it said "other" and it was 7800. what is other. The endo specialist called me right away when he got the results and said, "by rights, looking at these levels, you shouldn't even be here, lets get u on meds immediately. That really scared me. I did't mind the hyperness and the feeling that I constantly had to be moving, but the breathing and the chest pain was a little more than I could bear. I couldn't even climb stairs, that was out of the questions. but I hope your right, I hope I can lose this extra. I will see him in a couple of weeks and we'll see. Thanks Dyanna
Hi oh lm sorry to hear you have other problems as well!!! Youve been through the mill girl!! Can understand the MR CONCERNED! had my run ins with hubby like you say nobody knows unless theyve been through it. Just to let you know weight watchers works brill its so easy to do too can you give that a try? I dont understand lab tests in detail l made a big mistake not asking for mine now l wish l had.. but looking at your numbers in the thousands l havnt seen that before maybe its some other method of testing? Do you mind me askign what kind of chest pain you experience? Is it pressure? a dull pain that comes from nowhere? I get that too l dont like it one bit it freaks me right out. Good luck with everything keep in touch the people here are great xxx
Sorry to hear about your H's lack of understanding. My H is a great guy, and as a physician, knows technically what this is all about, but he really never did get it when I was sick. He thought if I just "tried harder" I would get better, and he also thought I used it as an excuse. He believed the dogma that if your "numbers" were in the normal range, or anywhere close, then any complaints I had must be in my head.
I had Grave's too, and eventually had radioactive iodine (after 2 years of methimazole). After radioactive iodine my thyroid levels plummeted (I went from hyper to a TSH of 43 in 6 weeks!) and my endo increased my Synthroid so slowly that it took 6 months to get to the dosage I needed. However, halfway through that, when my H was getting frustrated that I wasn't getting better faster, the endo told him I "should be feeling fine now" - when my TSH was 6 and I was only on 60% of the dose i finally required! I'd like to see HIM be "fine" on 60% metabolism!!!
Anyway - my point, if I have one, is that the disconnect between what my H was being told and what he thought he "knew", and what I was experiencing, was really damaging to our marriage at the time. We've repaired things, and I think when I finally got "well" he realized maybe I was right about some things, but it still isn't anything we can really talk about, even now. I think partly because it is such an "invisible" disease, and partly because of the fear and denial thay have about not wanting to believe you could be sick (or even, selfishly but understandably, just wanting you to be well and to be able to give them athletic companionship and do things with them). Try to have a little compassion for him, because you probably haven't been the woman he married for a while now (I know I wasn't - I was such a space cadet!). I've found that it works best if I don't really discuss my test results or fears with him, but do occasionally let him know when I'm having a really bad day with symptoms (so he doesn't think I'm just lazy or something).
As for the weight gain - I was one of those lucky people who gained weight while hyperthyroid. Probably a side effect of the B blockers at first, plus I couldn't exercise and would eat to try to boost my energy because I was so tired. Then after radioactive iodine and thyroid replacement, I was finally able to lose 20 lbs., but put it back on a year later when my TSH creeped up and family problems meant I couldn't diet or exercise for a year. Now I'm trying to lose it, but 1500 calories a day and step aerobics isn't budging it, so I'm back to looking to fiddle with my thyroid replacement.
You are in a particularly tough spot, since you need to control your weight so tightly. Some thoughts for you:
- keep exact track of your diet so you can show your doctor exactly what you are eating. It's too easy for them to assume you can't possibly be eating as little as you are. If you subscribe to SELF magazine, you get free access to their site selfdietclub.com which has a handy tool for recording you daily food intake, it will give you calorie totals and break it down into percents fat, carbs, and protein. It was using this tool that finally convinced me I need to adjust my thyroid meds, because it proved that I was only eating 1500 very healthy calories a day. If you kept this log and printed it off for your doctor it might help.
- do what exercise you can. I know it's really really hard. And you don't need to do anything that pushes your heartrate up. But try walking on a flat road, or maybe some light weights (you won't build much muscle thought until your thyroid is under control). Or maybe yoga?
- Do insist on getting your levels rechecked. The TSH lags in response to changes in T4 and T3 (that's why, when giving replacement hormone, they usually wait 6 weeks to check it, to give time for the TSH to respond). If your T3 levels have dropped dramatically, argue for a decrease in your methimazole dose.
- take a multivitamin. Lots of vitamins are cofactors in reactions that are controlled by thyroid hormone, I find I just do better when I take them. If i get lazy and forget, I do worse.
- try to get on a better footing with your H by using a technique called Validation. Acknowledge his experience (even if you don't agree with him) by saying things like "gee, it must be difficult seeing your wife change like this' or "I know it must be frustrating to live with my forgetfullness right now. I really appreciate everything you do to keep our family together." Recognize that it is a cheeseless tunnel to try to get him to understand what you are going through, and come here for that kind of support.
- track your resting pulse rate too and bring that in to the doctor - he may feel more reassured about lowering your methimazole dose if he can see a record that this has come way down.
If you ever get to the point of considering radioactive iodine - studies show the average weight gain over the next 2-3 years after radioactive iodine for Grave's is something like 20 lbs.
Interestingly, with thyroid cancer patients, after radioactive iodine treatment, the goal is to put them on high enough doses of Synthroid to keep their TSH levels suppressed (abnormally low) - the idea being to keep any stray thyroid cells from feeling the need to reactivate. THESE patients don't gain weight. Hmmmmmm?
makes you wonder what the difference is that they can keep one patient from gaining but cannot figure out why the other does. It makes no sense to me. I think I may just stay away from radioactive iodine. Don't like some of the things I have heard. Thanks Dyanna
It's because they don't normally put patients on "high" doses of thyroid hormone (high enough to lower the TSH down out of the normal range). But imagine that, when they DO do it with thyroid cancer patients, in order to treat their cancer - THEY don't gain weight. So, that say to me - gee - duh - if you have a post-radioactive iodine patient who's gaining weight, maybe you should think of juicing up her thyroid levels a little more? But that would fly in the face of the current dogma. Heaven forbid.
you would think that even a patient who is now hypo if the dosage of synthroid was high enough they would increase metabolism and lose weight or at least maintain it so as to not gain. You will like this one, the specialist I went to, I asked him about gaining weight and he said "Thyroid patients do not gain weight from having no thyrod activity they gain weight from eating." But how many of us are gaining just from being on methimazole or ptu.