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I have been reading a lot of your posts to understand what is happening to me, you have all been a great comfort to me today and was concerned to see a lot of teenagers have this. Should I have my boys checked to be safe, they are 16 and 18. Is this hereditary?
Cyndi – Welcome. This diagnosis can seem like a lot of scary change at once. I had radioactive treatment last August – now I am on the replacement and it is part of my routine to take the pill every day – I don’t think much about it. As far as weight gain, I am really making an effort to exercise and eat well, I have not gained weight. So, I think it is pretty individual. Once your thyroid is normalized, you weight should do the same.
BTW – I though mine was menopause – and I am a nurse practitioner. The symptoms are very similar.
As far as testing your sons – males get it much less frequently and having a parent with the disease increases risk but not greatly. I believe I recently learned that if your mom has it and you are female – the risk is 5% instead of 1%. Those are ballpark figures. I would ask your doctor, though, to be sure because there may be other factors they would weigh in the case that I do not know about.
I was diagnosed with Graves in October and was sent to a specialist yesterday. Scared me to death. He says that I have to take radioactive iodine, can’t touch my granddaughter for a week, will gain weight and have to be on pills the rest of my life. Nothing he said sounded very promising. Has anyone had the treatment and not had to be on pills? How much weight will I gain? I have been reading your posts and am glad to know that I am not alone here. People have acted like I am crazy and my local doctor had told me for a year it was menopause at 42.
Hi Cyndie,
Just one comment to add to Cathy’s post ~ the point of RAI treatment is to destroy your thyroid, so everyone who has a successful RAI treatment must take thyroid hormone replacement after the thyroid dies off. The advantage to thyroid hormone replacement is that it is not a pharmaceutical in the sense that you are thinking. It is chemically identical to the thyroid hormone our body would produce on its own, so it doesn’t require "processing" through the liver. It just replaces the hormone the thyroid was providing beforehand. The only side effects come from taking too little, which would result in hypothyroid symptoms, or taking too much, which would result in hyperthyroid symptoms. Once we’ve got the right dose dialed in, there are no other issues with taking long term thyroid hormone replacement. (Rarely, a patient is allergic to the fillers in the pill. For those patients, there is one brand made with no dyes and no fillers.)
The Doctor from Little Rock called this morning and said that I have to stop taking my thyroid medicine and just take my heart pills for one week. Then I have to go so more blood work and start the radioiodine. If I stop takign the pills I am going to go back to the way I was before and I don’t want that. If the thyroid pills are working, why can’t I just stay on them? I take two pills every six hours and the heart pill in the mornings. My hair has stopped falling out my nails have grown back, I feel so much better, still not perfect but better, why would he want me to be sick again? I am confused.
Is it okay to take a sleeping pill to help me at night. I bought some of those all natural sleeping pills but thought I should ask first.
Your doctor is preparing you for RAI, I was taken off PTU 4 days before RAI, too.
Before you do that (RAI), educate yourself on this disease, otherwise you will end up with thousands of disgruntled people who feel they were led into RAI like cattle, while if they knew, they would prefer another treatment route.
(I had RAI, but it was my decision).
There are 3 treatments for Graves – medications, RAI, and thyroid surgery. Often, people feel that they would see if they could correct their thyroid with medications (PTU or Methimazole) and eventually achieve remission. It seems that you respond well to meds, so there shouldn’t be any rash into RAI. It’s better to save your thyroid, I think. But some people either don’t feel great on ATDs, or never achieve remission, so they choose RAI or TT.
Don’t let your Endo led you into RAI until you understand what exactly this disease is, and that you agree with RAI.
Research, research. Google for Graves disease.
The weight gain – it should be the last on the list of priorities, because untreated Graves can be fatal. That’s first, and later you can deal with the weight. When you have a heart attack, you don’t ask about weight – your heart is at stake. Same here, Graves affests cardiovascular system, muscles, eyes. I had RAI at 41, now 3 years later I’m 20 lbs heavier but I sharply stopped exersising when I was diagnosed. I’m back to my home gym and intend to lose my weight by this summer. Yes, all I take is a small hormone pill in the morning, and don’t track my thyroid levels as often as before RAI.
Whether your kids will inherit – it’s anyone’s guess. Tell them of the possibility, and that they should watch out for stress.
Cyndi – I will chime in on sleeping pills. I take them pretty regularly, even before Graves, due to shift work sleep disorder. There are many good ones on the market now that are non habit forming, etc.
I would be very cautious with over the counter herbals because sometimes these change the way your body breaks down other meds – they can cause your other med levels to be too high or too low. So, please talk to your doctor about the most appropriate prescription!
We are happier and healthier with enough sleep so I really encourage anyone with sleep issues to consider using a sleeping med. Again – a word of caution with mixing any herbal with meds without talking to your provider first to be sure there are no interactions. Also – the prescription sleep meds are actually shown to be effective and that is not always the case with over the counter meds. Cathy
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