Graves diagnosed April 2015 - why me??

Hi I am a newby and I was diagnosed in April 2015 with Graves Disease and my GP (she is fabulous by the way) started me on 5mg of Carbimazole to see if that helped while I waited for my first hospital appointment. I have been taking the same dose ever since. According to my hospital visit on Friday all my T counts are at acceptable levels so they are proposing in October to stop the drug completely and blood test me every 2 months to see if I flip back. If I flip then it will be back on the Carbimazole and a choice of radio active iodine or surgery. So when I said if my T levels are good can I stop taking it now I was told no, wait until October...my question why was responded to with ...have you ever had a scan done of my thyroid, when I said no the hospital said they would make an appointment for this to be done to check for nodules. Then they would make a decision!

So I am 55 years old, I quit smoking around the time I started the drug and my weight gain has been horrific ~70lbs I think, yes I am 5ft 10ins but I feel like a whale. My joints hurt and my clear skin I have been proud of all my life is erupting and the spots that form on my boobs well they are just disgusting and they are scarring.

Do I add I have never had an illness except glandular fever as a child and the odd cold. No surgery, no broken or fractured bones and 2 nights in hospital to deliver a son!! So why oh why now does my body fail me?????

4 Replies

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  • There is a hypothesis that all autoimmune disease begins in the gut. Smoking has an effect on the gut microbiome, so quitting changes things up again. All manner of people report that their Hashimoto or Graves began after quitting smoking. Not to say you should take it up again.

    Possibly even though your 'T' numbers are good, maybe they are not optimal. If you are able, please post the number figures along with the testing ranges so people here can have a look. 5mg of carbimazole is a very low dose.

  • Hi Gabkad

    I actually quit in the January following a trip to my GP thinking I was losing the plot in a serious and emotional way!! She told me I was a candidate for either an ulcer or a heart attack so I quit - I lost coffee too for around six months and that was way worse. She wrote to my OccHealth team and asked them to restructure my job to assist with what she suspected was stress but wanted to be sure. 3 months of blood tests later, almost stress free work and it was official I had Graves Disease.

    I only get to see my blood results on a screen at the hospital, as my next visit won't be for a while, October possibly. If I wait the usual 6 months then it will be December or January.

  • If you feel better now, that's the main thing but I hear you sister: gaining loads of weight!

    i ended up by last Summer at least 45 pounds above where I ought to be. Without going on a 'diet' but reducing intake (i.e. no face stuffing with seconds at suppertime) and increasing physical activity, i've lost 20 pounds so far. Slowly. Sometimes it stalls out and then I check after a couple of weeks, and I'm down 3 pounds. But I've now figured out what works and that's the main thing. I'm sure lots of people wouldn't eat the way I do but living alone and not preparing meals for the family anymore means if I want to eat a pound and a half of asparagus for supper with a tablespoon of mayo, it's my business. Know what I mean? The other night was the first time in ages that I actually cooked what most people would consider to be a 'real meal'. Most of 'summer productions' wouldn't make it on a restaurant menu anywhere. LOL! I've been 'eating out of the garden': lots of red chard, callaloo, lettuce, tomatoes, green peas, beans, onions, shallots, etc. etc.

    I think it's important though to eat meals sitting at the dinner table. This way there's no mindless snacking.

  • Update: My original blood results (I found the letter) were:

    Thyroid function

    April 2015 - supressed TSH Free T4 17.6

    August 2015 - TSH 0.02 Free T4 14.3 and Free T3 4.8

    January 2016 - TSH 0.11, free T4 12.6 and TSH receptor antibodies less than 0.4

    I have been taking 5mg of Carbi since April 2015 when my GP diagnosed me.

    At the end of the month I am off to the Nuclear Medicine unit for a scan and a visit on the 13th September with the actual consultant on the 13th September 2016. In October I am scheduled to come off Carbi as I was told I can only take it for 18 months!

    Fingers crossed!

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