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in reply to: I JUST DON’T UNDERSTAND #1066824

It took me a full four months to go hypo after my RAI. I had hyper symptoms and test results up until the sudden switch to hypo. My endo told me that it might be a sudden change. I wouldn’t give up hope yet that it hasn’t worked. Your four month mark is just today. I’ve heard it can take up to six. Hope you are feeling better this morning.

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in reply to: Update on me #1066830

Sorry about that. I know that ER doctors are sometimes the least effective. I had one order thyroid tests two years ago because I went in with heart pains??????? The tests never got done and they didn’t worry. That would have caught my Graves a lot earlier. Had to go through hell to get some help it seemed. Glad that you know what it is now. I’ll cross my fingers that the biopsy brings good news.

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in reply to: Too much levoxyl? #1066951

Ski or any other facilitator,
Can you explain to me what happens when we are on hormone replacement with regard to the way our bodies use the hormone now as opposed to when we had a regular working thyroid? I know that when I had a normal thyroid years ago that my levels were regulated by need and supply went up and down to meet that. Now that I am on a constant dose, so to speak, is my body still regulating somehow the use of a certain amount a day? You said that the hormone will build up in our systems slowly. Does that mean that we are using up a constant amount a day and that taking the 75 or 50 mcg or whatever dose is enough to keep us "just normal" or are we at some point adding to a big pool of hormone that hangs around waiting to be used?

I’m just really frustrated that I am feeling hyper symptoms again. It’s only been the four and half months on any hormone so I realize that it’s not been long enough to really tell if I am getting settled. Waking up in the morning with symptoms really throws me for a loop and I get discouraged. Trying hard to believe that this will all work out in the end but this morning it doesn’t seem like it will.

Thanks for all the help.

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in reply to: Too much levoxyl? #1066949

Lacie,
Sorry to hear that you are having the same troubles. I think that because of our ages we are at risk of great hormone fluctuations from estrogen etc.. That isn’t helpful at all I know but I guess if I can get through hyper I can get through menopause as well. I didn’t think of lowering my dose on the days I felt so bad. I am going in a few weeks to get another blood test for levels. Hopefully it will show that I am getting there for normal levels. How goes the weight issue? I am up a few pounds from the holidays! Guess it’s just something to live with for now until I get more settled levels. I am still trying to do better. Hope that you are feeling some better when you read this.

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in reply to: new to replacement – couple of questions #1066907

I got and still do get lots of muscle aches etc. I am not normal yet, on my fourth dose change of levoxyl going from RAI in May to hypo to now. It can be very frustrating not knowing if you will feel well enough to do things still.

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in reply to: Ostheoporosis and Graves #1066923

I found out last year that I have osteoporosis at age 45. My father and mother both have it as well. My father has Graves and my mother Hashimotos. My father and other Graves patients sometimes don’t process Vitamin D well. My father’s levels were very low and he has had to take large amounts to get his up to somewhat normal levels. I was told that that was probably part of the reason that I got osteoporosis so early too. I have started taking 2500 units of D3 per day with calcium and magnesium so that the calcium can be absorbed. I haven’t hit menopause yet officially so I can’t take any of the drugs you see on TV or in magazines as they don’t know if they would even be effective in pre-menopausal women. I was told my best advice for now is to keep taking the calcium, magnesium, Vit D and to get my thyroid levels under control. Then I can start to slowly build up my exercise again so that I can do weight bearing exercises to strengthen my muscles and bone. Family genetics do play a part so ask your parents etc. if they have osteoporosis, osteopenia (the precurser) or if they remember old women having hump backs in your family. It’s a good thing to keep on top of so that you don’t become a statistic later with a broken hip etc.. I have already lost .25" and think it’s from the osteoporosis.

I felt bad about another disease on my plate but have gotten used to it now that I am feeling better overall. Next stop is normal thyroid levels!!!!!!!!

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in reply to: Too much levoxyl? #1066947

Thanks for the replies. I am near when my period should show up and have always had worsening of symptoms during that hormonal shift too. I was told that I am going into menopause too by my GYN last year so that probably isn’t helping. I will try and ride this out for the next four weeks until 8 weeks from the dose change to the blood work. I will say that this will be the longest I’ve gone between testing since I started levoxyl. I think that my endo wanted to bring me up slowly and he did but I got tested every four weeks for the first three months.

I’ll keep thinking good thoughts. Any more experiences like mine would be good to hear though.

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in reply to: GETTING RAI ON DEC 16….I’M SCARED #1067130

Patti,
Glad to know that things went well today. Keep thinking healthy!

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in reply to: Hyper after RAI #1067169

enough,
I went back on methimazole for a few weeks to get through the rough patch until I was hypo.I had been off for 3/4 of a year before the RAI. It took me 4 months from the time I had RAI to get the numbers that were hypo. My endo actually told me that this would probably happen. He’s seen it before lots of times. The way it was explained to me was that the body is getting rid of the excess hormone stored and then starts trying to overcompensate and you can actually go really low on your TSH before it starts to come back up as you have so much extra hormone in your blood….. or something like that. Can’t remember exactly. You are on the right track though. Take the PTU if you think it will make you feel better. This is a slow and steady race to the result you want.

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in reply to: Hyper after RAI #1067167

enough,
I had the same thing happen to me only around 8 weeks. It is probably what Ski said a shifting on the levels in your body. Be ready though for your labs to not show what you want. It took me four months post RAI to get the numbers I needed to go on replacement hormone. If your levels are still really hyper on paper it will be a while before you get any treatment. I felt bad for a while but it does get better soon.

Take care and good luck with your labs,
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in reply to: Weird story about my thyroid…im so confused. #1067113

Bobbi,
I think that she was pregnant for a few weeks but isn’t anymore.

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in reply to: RAI update #1067192

I am now on 75mcg of levoxyl. My last TSH level was 23. I am to try this for 8 weeks and then get levels checked. I have lost almost 10 pounds, feel a lot better and hope to get back to my regular exercise in the new year. My periods are still strange but that comes with the territory and my age of 46.

Hope everyone has a great holiday season with family and friends. That’s what counts…….

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in reply to: Weird story about my thyroid…im so confused. #1067112

Sorry you’re having such a time with your levels. Glad that you are feeling well though. I’d wait it out and see what happens not being on the replacement. It seems to me that if your thyroid has started up again it will be easy to see that in a few months and if it’s just a blip that you will go hypo again soon too. Hopefully somebody else will have experienced this too and can give you a story to go on.

take care,
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in reply to: GETTING RAI ON DEC 16….I’M SCARED #1067118

Patti,
I had my RAI on May 8th and I am, like Hopeful, now able to do things in my day instead of dreading each symptom etc.. I am still not settled on my replacement dose but am getting so much closer. I am not young as you are, I’m middle aged so I am dealing with other issues related to my age. RAI was my choice from the beginning of my Graves disease diagnosis in 2007. I tried the drug route and it didn’t really work for me. RAI itself was easy. The recovery is a struggle but you can mentally shift from I’m sick to I’m healing in your mind. I hope that things go well for you and that you can lean on this bulletin board for support. They are a great bunch. Ask any question and somebody will have thought the same thing at some point in their illness too.

I did gain a lot of weight when I went hypo on the drugs. As I am getting back to my normal levels I have lost almost 10 pounds so far and I really haven’t been able to get back to my regular exercise quite yet. Just worry about being healthy and not weight gain. I never tested positive for the antibodies either. My endo says that the test for Graves antibodies isn’t sensitive enough yet.

Keep crying and asking questions…….. It’ll get better one day soon.

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in reply to: My choice of treatment and a question about it #1068064

nestle,
I had a bad rash on one version of methimazole. It was determined that is was one of the fillers and not the active ingredient. If you search my old posts you can find the things I wrote about it previously. It might be worth trying to find a formulation without povidone if you can get it. I had to go on the brand name which didn’t have it. My drug store wanted me to stay on the generic but I said no. I wasn’t on it too much longer anyway in my story. I had had RAI and was waiting for hypo to come.

Hope you can stop the itching. It know it’s bad from experience.

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