Help graves disease

2012 I was diagnosed with graves thrrotoxiicosis and treated with carbimazole, which worked for a while. At the start I was given b12 injections when I went for my third one practice nurse said I didn't need them.

Went hypothyroid in 2015 had radio iodine treatment in November all seemed well, till I was admitted into hospital April this year and was told I know had a under active thyroid and put on levothyroxine sent home with no information at all.

Thankfully through this site I learnt that I might be b12 deficient yep I was now started injections First one given Friday.

I'm totally confused do I still have graves disease even though am now under active thyroid. Hospital didn't inform my Endocrinologist and when I didn't hear from her a rang up to find out they had no record, not seeing her till December . When I asked if I could see her earlier was told that I was lucky to have appointment then.

Health is really poor and it has had a big impact on my mental health ( have bipolar 2 ) I feel in the dark to what the hell is happening .Need some reassurance that am getting the right care and treatment.

14 Replies

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  • Hi Nagged,

    Ablating your thyroid gland with RAI stops you being hyperthyroid but it doesn't get rid of Graves. RAI will usually make a patient hypothyroid within 6 months. You will need to take Levothyroxine daily for the rest of your life. If you post your recent thyroid results and ranges (figures in brackets after results) we can advise whether you are optimally medicated on Levothyroxine. Being under medicated can impact badly on mental and physical health.

    This is the best forum for advice on B12 deficiency healthunlocked.com/pasoc

  • Hi haven't got copy of bloods, but going tomorrow for b12 injections will ask for it then. Due to have thyroid bloods done on 9th will ask for copy

    On 75 micrograms levothyroxine, have also already joined pasoc they have also been a great help.

    Still gobsmacked that I was never given any information on graves disease when first diagnosed, if it hadn't been for this forum and pasoc I hate to think what might have happened to me. I honestly didn't know graves was for life.

    For the last year I've been struggling with my mental health now I know why.(bipolar 2) even my shrink said that he didn't know what impact the thyroid was playing seeing him next week can't wait to see what he makes of all this

    Thank you once again to everyone who's contacted me , this forum has been a life saver

  • PS I didn't even get six mths lol

  • Oops sorry forgot to do @ Clutter

  • Nagged,

    My bipolar had been stable for a long time but Hashimoto's (also autoimmune) wreaked havoc. Following thyroidectomy I no longer have Hashimoto's and since thyroid levels have been stable bipolar has crawled back in the box. Unfortunately Graves doesn't go away after thyroidectomy or ablatement and there's no cure for it but gluten-free diet may help reduce antibodies.

    chriskresser.com/the-gluten...

    google.co.uk/?client=firefo...

    When you get your results and ranges (figures in brackets after result) post them in a new question and members will advise whether you are optimally medicated. 75mcg seems to me to be a low dose for someone without a thyroid gland.

  • @Clutter

    I couldn't understand why my bipolar was getting worse take meds religiously, now I know why

    I have two insulin dependents at home when they were diagonised they got great, care,support and information.

    After going through this forum why?. Is it that so many of us haven't got a clue about our thyroid coditions.

    Throught I had a good endocrinologist, can't wait to see her in December I'm going well prepared , she might learn a few things ( joke)

    Ps I have mild dyxelaxia so bear with me

  • Nagged,

    Unfortunately, a lot of endos are diabetes rather than thyroid specialists and as long as thyroid levels are anywhere within range, rather than optimal, are inclined to think that all is well and symptoms are non-thyroidal. They seem to forget to tell patients that symptoms may lag behind good thyroid levels by 2-3 months too.

  • @clutter yes mine is a diabetologist as well, funny thing is my husband was seeing her ,but didn't think much of her now goes to gp practice

    Someone's smug in this house now.

  • @clutter just found some results from 7th July

    Tsh 30

    Ft4 in range 18.2

    Was taking 50 levothyroixin increased by 25

    Now still on 75 thyroid levels being done 9 the sept

    Thanks

  • Nagged,

    You were very under medicated to have TSH 30 on 50mcg. 75mcg may not be sufficient to bring TSH down to 1.0 or lower which is good for most people and you may well need another dose increase or two after your next blood test which should be early in the morning and fasting (water only) as TSH is highest then. Take Levothyroxine after your blood test.

  • Clutter

    Had only just gone under active after radio iodine this

    was my starter dose ( put on drug in hospital )

    Interesting about not taking levthyroxin ,asked doctor about that, reply take it before bloods. I Wii do what you said. Bloods being done 9 10am at least they got that right.

    thanks for your help

  • Clutter

    Rang endo Secretary about taking tablets before bloods, just rang back take tablets before bloods what ? Gp and now her saying take. Going to do what you said, but a bit confused why they both said same thing.

  • Nagged,

    They've said the same thing because they think it is okay to take Levothyroxine before your blood test.

    If TSH is all that's being tested it really doesn't matter but if FT4 is included Levothyroxine can peak in the blood for up to six hours after ingestion and may give a false high FT4 result.

    _______________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I've got more faith in you and this site, after all the mistakes they've made am doublely checking everthing..

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