Male with Graves disease, on meds, going to have RAI, but SERIOUSLY worried about weight. HELP.

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Hi there,

I am a 21 year-old male with hyperthyroidism. I know it is extremely rare for men to get it, and especially at my age, and this only makes me feel more depressed. I have been living with it since I was 14.

The reason I have had it for so long is because I stop taking the medication as I am so scared of putting on weight. I know I'm a man and I should want to put on weight but I have been slim since I was little and the thought of putting on weight absolutely terrifies me. I currently weigh 10 stone and I am 6'2.

Whenever I think I am putting on too much weight by taking carbimazole I stop taking the meds, and therefore am probably delaying my treatment by quite a lot.

When I stop taking the meds I lose a lot of weight. But I know living with a hyperthyroid isn't healthy, especially for someone who is still developing physically and mentally, as I have been told NUMEROUS times by my doctors.

I think I am also developing thyroid eye disease which only serves to worsen my anxiety. Although, I think this is my own fault because I am a recent ex-smoker, smoking since I was 15. However, I only started getting problems with my eyes about a year ago.

I have been in talks with my endocrinologist about radio-active iodine and I think it is the best way forward, but again I am TERRIFIED of gaining weight.

I just want to be normal, and have a normal hormone system so I can control my weight how I like. By taking carbimazole it is beyond my control and I can't even think of eating. Will RAI allow me to have more control or will it just make me put on loads of weight?

I really respect everyone on here and how they help eachother and I know I must sound like a bit of a whiner but I'm at a loss at what to do. I'm scared of putting on weight, I'm scared about what's going to become of my eyes and I'm scared about RAI.

Please help.

Love,

Silas

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8 Replies

  • Posted

    It seems like you are underweight by every method of determining healthy weights for males based on your height.  If you weighed 11 stone, however, you would still be lightweight but more likely in the normal range.  If you weighed 12 or 13 stone you would still be normal and only at 14 stone would your weight be considered high by most experts.

    RAI is not usually recommended if Thyroid eye disease is suspected or likely to happen.

    RAI also puts you at the mercy of the doctor because you will not necessarily be given enough supplements to keep you even at a normal weight.  You can always take less of a dose but not more (for very long).

    I was on Methimazole, which is much like Carbimazole, for about 3 years altogether.  I stopped taking it for a summer though, and felt very good, but I had to return to an endocrinologist because so many people, friends, relatives, and doctors were worried about me.  I was age 60 when I was diagnosed and am 67 now.  I am a female who was always thin until I neared age 40 and gradually put on weight until I was about 205 lbs. (14.6 stone) before  I lost more than 5 lbs without regaining 10.  Then I lost about 10-15 lbs (about 1 stone) over 3 months, developed a fast heart rate, and was tested positive for GD.

    The last year I had to take Methimazole before going into remission, I was allowed to decrease my MMI slightly, because it was affecting me so badly that I fell flat on my face in the street just before my appointment with the endo.  He decreased my dose from, I think, 2.5 pills per day 7 days a week to 2 pills every other day alternating with the 2.5 pills.  I don't really remember, but a lot of the time he decreased my doses by one half pill per week or such small amounts.  When I did that the first time, my TSH jumped from practically zero to well into the normal range.  Still my doctor doubted that it would continue to happen.  When he didn't decrease my dose himself, I started decreasing it very slightly, but always allowing 4 - 6 weeks of maintaining the same dose before the next blood test.  My TSH remained in the normal range until I was off the MMI altogether, and I started supplementation with Liothyronine in extremely small doses.  My TSH remained normal until I started Levothyroxine in addition to it, then it dropped to zero again.  I had to go off the supplements, then, and back to another endocrinologist.  

    I felt horrible until my doctor put me on Wellbutrin, which left me free of all they hypothyroid symptoms I had been having.

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    • Posted

      wow fern,

      it seems like you've been through quite a lot.

      I think one of the main things that irks, no IRRITATES, me about having this condition is that i am a male and young.

      I'd love to know at least one other male with this condition. 

      Also am I right in saying that it is more common in older people? (although everyone knows life starts at 60!!!)

      I'm sick of going back to the endocrinologist again and again I just want it gone.

      What do you think I should do fern (and anyone else reading)?

       

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    • Posted

      Yes, it occurs more frequently in females and at age 60 is a very common time for it to begin, but it is certainly not rare in males under 60.  I have a friend who is probably about 20 years younger than I am and her husband must be around the same age.  He had his thyroid removed or ablated with RAI sometime before I was diagnosed.  He was losing a lot of weight at the time and was glad at first to be gaining again on the levothyroxine dose he was given, but he has gained more than he wanted and can't seem to lose it.  The doctors are only happy that he isn't hyperthyroid anymore.

      I refused to have RAI myself and it was the following year when they came out with reports that the likelihood of developing the eye disease was greater after RAI.  I was having eye problems--double vision, actually, which had plagued me since childhood but became far worse when I turned 60.  They thought it was due to the GD then, but now think it was not.

      I am very glad I still have my own thyroid.  As to what other people should do, I can't really say.  That is between them and their doctors.  I only say I flatly refused RAI and I flatly refused surgery.  And now, I am functioning quite well with Wellbutrin being my only prescription medicine.  Also, I don't need to go to the endocrinologist very often anymore with my levels having been in the normal range for most of the last year.

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  • Posted

    Hello Silas,

    I think the most important thing I learned about RAI was to be sure that you get enough monitoring and start on thyroxine replacement as soon as the TSH level starts to rise post-treatment.  My doctor thought that the RAI treatment I received had not worked and left me without monitoring for 2 months.  I had my treatment in September 2011 and a test mid-October showed no change.  Nothing else was done.  I very slowly got worse and it was only at Christmas 2011 that a doctor relative I hadn't seen for a while said that I seemed to be unwell.  A check then showed that I had almost no detectable T3 and T4 and my TSH was over 95.  I was very sick and it has taken me a long time to recover. I gained a lot of weight (about 20kgs) and I'm still trying to get it off.  I was sleeping 14 hours a day and could not concentrate - bad brain fog! It all goes back to starting the thyroxine replacement too late because of the inadequate post-treatment monitoring.   After treatment started, I arranged weekly monitoring and was surprised how much the levels fluctuated. A snapshot once a month just isn't enough to let you know what's going on, and you don't want to allow your thyroid hormones to get into deficit or your recovery will be a lot harder.

    There are a lot of things you can do post-treatment to help you adjust, but don't expect it to be fast.  I found my energy levels were very low, even when my levels suggested I was in good health.  I started acetyl l-carnitine a month ago and the change has been AMAZING.  There are some foods that make recovery harder, too.  It seems that brassicas (cabbage, Brussels sprouts, cauliflower etc) are not good for us.  Avoid soy-based foods including tofu. Fluoride toothpaste is a no-no, and there are a whole lot of things that will neutralise the replacement thyroxine and make your replacement medication ineffective.  Doctors don't tell you this.  I have been dragging my tail around for nearly 4 years but since making these changes, I have felt like a different person.  I just returned from a camping trip in New Zealand, something I couldn't have thought about a year ago. I kept up with the younger members of the family (well most of the time) and didn't need lots of naps, like I did when I was just going to work and coming home - before making the changes.

    One thing they didn't tell me is the importance of taking your replacement thyroxine on an empty stomach - 30 minutes before you eat anything. Thyroxine binds to protein, so if you take your meds with your breakfast of muesli and yoghurt and a capuccino, the protein in your meal will mop up the thyroxine and swoosh it through your system without being absorbed.  I leave my meds by the bed and take them when I get up for my 4am pee.... but you're younger than I am and you probably don't have that need yet!

    Talk to your doctor and ensure that s/he understands what you're worried about and that the post-treatment monitoring will be sufficient to avoid my problems.  I recently changed doctors and got a woman doctor.  That was one of the best things I could have done.  There are a lot of dumb buggers out there with medical degrees and most of them are older men who don't know much about hormones or the thyroid - or care much.  Thyroid problems amongst men aren't so uncommon, but a lot of older (male) doctors still seem to believe that men don't suffer from Graves' disease or other thyroid problems. If your doctor says that men don't suffer from thyroid problems, I would look at his medical degree very carefully to see if it was cut off a corn-flakes packet.

    Take care, my friend, and let us know how you go.

    Mike

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    • Posted

      Thanks for the reply mate.

      I think what it boils down to is my obesophobia.

      I hope that being young, and male, will be my distinct advantage in that I may just naturally have a fast metabolism and that the carbimazole sets it back to that level instead of an abnormally high level.

      I know it isn't healthy for me to worry about weight, but it's hard to stop worrying if you're already an anxious person and I think my condition exhasibates my anxiety.

      Keep well everyone.

      Silas xxxxxx

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    • Posted

      Yes, being hyperthyroid does tend to magnify any tendency you may have to anxiety.  Also if RAI is the only way for yoiu to maintain a healthy thyroid level without the complulsion to stop the treatment, then you know best.  I merely question the doctors' ability to keep the level of thyroid hormones at the best point for every patient; and I know there is no going back once you have had your thyroid destroyed.
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  • Posted

    Silas,

    Like you I have had this since I was young but I never got my greaves disease diagnosed. It apparently runs in families and in my case its crap genetics. Great grandfather, grand mother and mother.

    Does that help not really.

    The medicine you take at the moment isnt very good for you and in theory its only meant to be taken till the disease goes into remission. After 6 years of taking it I think you can assume its not going into remission and I would take the RAI.

    When you do they do they will ask you if you want a low dose or a high dose. The low dose means your thyroid will die off slowly and you have to take the carbmizorol. Generally you feel all over the place and terrible till its gone for me it was months by which time I was hyper then started on the other piles levox something which was permanently under prescribed.

    Now I feel fine and am in control but I wish I had taken the higher dose and gone straight on to the levox.

    I think it is about 6 years since I diagnosed and my weight has come back under control. I found a very low carb diet has sorted out my ever increasing waist line.

    If I had to do it again I would go straight to The RAI and the new levox and miss the five years of my life it messed up.

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  • Posted

    HI SILAS, DON'T BE SCARED..... I WAS TERIFIED WHEN MY DOCTOR SUGGESTED RAI, BUT I WAS'NT WORRIED ABOUT GAINING WAIT, I WAS WORRIED ABOUT DEVELOPING LUKEMIA OR CANCER, BECAUSE RAI IS A FORM OF RADIATION, AND FROM WHAT I READ IT'S POSSIBLE THAT YOU CAN DEVELOP LUKEMIA. I WAS ONLYGIVING A LOW DOSE OF RAI, BUT GUESS WHAT IT STOPPED ALL OF MY SYMPTONS, AND I FEEL GREAT. AS FAR AS WGT GAIN, ALL YOU HAVE TO DO IS WATCH WHAT U EAT AND EXERCISE...lol. I SPOKE WITH THE RADIATION DEPT ABOUT RAI, AND SHE SAID THAT THE RAI THAT IS GIVEN TO HYPER PATIENTS IS NOT THE SAME RADIATIONS THAT IS GIVEN TO CANCER PATIENTS. ALSO KNOW THAT THE PILL IS GOING TO SHUT DOWN YOUR THYROID, ONCE YOU TAKE IT, THERE IS NO GOING BACK, OH AND WILL WILL HAVE TO TAKE SNYTHRIOD WHICH IS A HORMONE REPLACMENT, PROBABLY FOR THE REST OF YOUR LIFE, WHICH IS ALSO NO BIG DEAL, I TAKE IT AS SOON AS I GET UP, IT HIS A VERY TINY PILL, I JUST MAKE IT A PART OF MY LIFE, LIKE BRUSHING MY TEETH....HOPES THIS HELP
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