Endocrinologist diagnosed autoimmune thryotoxicosis - is this Graves or Hashimotos?

Last saw Endo in Feb, palpitations, T4 nearly 70. Taken Carb at 40mg daily until bloods now just under normal, asked for titration (medication according to blood results) now on 5mg daily and feeling fine considering. No appointment with endo, no prognosis as to long-term treatment, does anyone else have this, what's happened to them?

13 Replies

  • If you are on Carbimazole then it's most likely Graves, which is the most common form of Hyperthyroidism. I was diagnosed last August and have been seeing the Endo every 4 months. Am also on 5mg and due to stop taking it in August. You are normally on Carbimazole for 12 months or sometimes longer, some have been on it for 2 years.

  • Thanks for this.....I've read in some countries they put you on low dose carb for up to four years with better remission results and as it's 5mg happy to go with this rather than block and replace or RI, or surgery. Scan results showed thyroid uniformly 'lumpy' (nice!) and venous....how do you feel?

  • Have you also had antibody tests which might help you.

    I have negative results from antibody tests and my diagnosis is 'thyrotoxicosis'. My thyroid ran over last year and Carbi was used to bring nit back under control and I am now on a minimum maintenance dose for a while.

    My full diagnosis is....enlarged multi-noduled goitre, supressed TSH, with isolated T3 toxicosis.

  • Hi Celora,

    This sounds like me, thanks for replying, what do they want to do or is it case of watching and waiting, they pushed RI at first but now seem happy to let me test things out with medication ( it always helps to be a journalist as they see potential trouble in press) I have cut out wheat, dairy, caffeine and thinking about FodMap diet for a while have you found anything useful? x

  • Hi! Definitely do not want RAI/surgery - at this time - although this has been pushed as my only alternative. My current Endo is happy with a low dose Carbi for a while (although he has no interest in complementary therapies and so just ignores what else I do/use!). I have had a wonky thyroid for decades with no meds needed...it ran after a prolonged period of trauma. Dr P has been very helpful - as adrenals were also a problem for me. I would always prefer 'natural solutions' and Dr Eric's work I have found very helpful and interesting. Elaine Graves is also helpful on Graves and related thyroid problems.

    Dr Eric is....naturalendocrinesolutions.com

    And Elaine is..... elaine-moore.com

    I have found Bugleweed to be of great help.....hence my very low dose of Carbi (which I have taken primarily because I had gallstone issues and needed surgery....which I was told could not be undertaken without the conventional medical back-up).

    I have new bloods to be taken in a couple of weeks and f/up Endo appointment in July - when I am hopeful that I will start to wean myself off the Carbi. I am only taking 2.5mg Carbi daily and 5mls of Bugleweed tincture.....both tiny doses. I must add I saw a herbalist who was able to prescribe my initial dosage and I have tailored to suit my own requirements as I have got better.

    Can I/my thyroid live without the support? I guess the next big step....

    My Endo keeps pushing me to stay on the Carbi.....in case the thyroid kicks off again.....or what is the minimum dose for it to stay under control?

    I avoid gluten and caffeine and have very limited dairy/yoghurt (which I adore!) I also avoid goitrogenic foods and have learnt more about them over these past months....so will be interesting to see what long-term (healthy) effect this may give me.

    I am also trying to understand the iodine aspect - re goitres/toxicosis. All my reading suggests too much/too little iodine can result in goitres/toxicosis...so not sure which way to go here. Possible future tests? Although my Endo says there is no need....

    Always much to learn.....

    Priority for me this past year has been to deal with anxiety/stress....'kickass' on these and my whole being will benefit. Easypeasy, eh?

    Take care.


  • Hi Carole,

    Thanks for your comprehensive reply. We could be working from the same hymn-sheet so to speak....I have seen Elaine Moore sight and the Eric one, both interesting, did try herbalism - was hugely expensive, paying about £60 monthly for tinctures, have read about Bugleweed may well just go for that now from the net, priority for me to is to cope better with stress and I am given the warning body has come up with, have wonderful massage once a month and acupuncture plus do yoga - came back from great yoga holiday in Spain (Denia, Yoga breaks in Spain) very easy, relaxed and sunshine...keep telling my adult daughter to watch herself and look at my mum, definitely think she has the same but never diagnosed and now riddled with osteoporosis (mind you at 85 she does drink like fish and still on 40-a-day!) I suppose the only thing I have concerns about is that nodules are kind of impossible to get rid of. I also get confused about Iodine as seems to be two strands of completely opposing views, one you take and the other avoid....please do keep in touch. all the best Melanie x

  • Will do Melanie...you can pm anytime if you like.

    Yes I do Pilates, love reflexology, meditation and dog walking and gardening and reading.......all helps re the stress/anxiety. Dr P advised strongly against any additional iodine as it might overload my system...especially as I love fish! Interestingly (for me) although Endo has made no comment....is that my noduled mass has shrunk since running fast........? I know it's there - when I swallow you can see the mass.

    You can also massage the area - and the lymphs to help with drainage. Very gently from the neckline down and then up each time towards the chin and always with downward strokes.

    I also love accupressure...hand and feet massages.

    Herbals are expensive - you are right - and getting the correct combination to suit. I am highly sensitive :-) so only need little bits...and try and tell that to the medical profession! I get the Bugleweed from Bristol Botanics (oops can I say that here?)

    Definitely look at the osteo link..... especially if your Mum has the problem.

    saveourbones.com is an interesting site.

    I also use Lemon Balm - as a tea - as a soothing herbal drink. It is used for thyroid/anxiety health. I just pick a leaf or two from the garden. It is also a diuretic - so just be careful how much you consume.:-)

    Have you seen Thyroidthru - GreenLife. Expensive - although it really helped me for a long time....and I thought I might re-start that once I know what my latest bloods are and after the next Endo's appointment.

    I can't bear the thought of it flipping again....so I have 'bugletime' upon waking and 'carbitime' in the evening....and accepting that this is what my body needs as this time. And, like you, the priority to stop the 'stressors' from kicking in.....which is where I think the massage, reflexology etc does play an important part. And I like the nurturing/holistic concept of looking after myself better - myself - and also allowing myself to be helped! And knowing I am not the only person on this planet with this problem....and, most importantly, I am not alone in how I choose to deal with it!

    All is well...;_0


  • Thanks so much for all this Carole, I live near Bristol so that's a great place for me to get Bugleweed, have lemon balm tea - from Lahloo Tea, online but also in Bristol, my endo is Dr Thorogood, only seen her once, seemed lovely, I once interviewed her boss - lovely Stafford Lightman - when having hormone problems seemed a distant galaxy away, this site is a godsend and it's really good to contact you as seem to have gone through same thing and have similar viewpoint. There is a monthly meet in Bristol and I am thinking of setting up one locally - did mention to GP and see what happens, they might be concerned about criticism but it's really just mutual support because this is something that really affects so many (mainly middle aged women!) and I can imagine GP's get a bit sick of the sight of them, however, with the right support they might begin to feel a lot better...xx

  • You do not really need to avoid goitrogenic foods, they could actually help you if you have Graves' by suppressing some of the excess thyroid hormone. It would only be a problem if you had Hashis, which it seems you do not.

    Also, cooked goitrogenic foods have very little or no effect on the thyroid. The benefit of those vegetables is immense in terms of general health. Cruciferous vegetable are among the list of immune-system boosters on the Elaine Moore Website. Curly Kale is in the top 10 and it is a cruciferous vegetable.

    They are also well known as cancer-fighting foods.

    It's not a good idea for your general health if you cut out an entire food group like cruciferous vegetables unless you know for a fact that they are doing you harm (and that it's not the stuff they put on them when growing them). Elaine Moore also suggests that we should eat a good mixed healthy diet with as much organic and unprocessed food as we can.


    Her dietary advice, while aimed at Graves' patients, is very sound for most people, and even those who are hypothyroid can eat a very small amount of cruciferous vegetables so long as they are not raw.

    This is, of course, unless you have some other condition which means avoiding these foods.

  • I'm most definitely not going to cut out cruciferous veg, my diet is nearly all veg, no wheat, very tiny amount of dairy and protein in form of organic meat and fish - my only exception to being virtuous ..is enjoying a wine or two at weekends and not giving that up!

  • Excellent thinking Melanie. Thyroid UK membership seems to be growing at a fast pace and that must be a refelection upon people wanting more help/to be in charge or their own health issues. I also suspect, sadly, a growing disquiet in the lack of help within the medical profession. Wonky thyroids are so complex and, as you and I know, being 'thyrotoxicosis' is not a straight-forward problem for some to understand.

    Good luck with the support group. Anything else I can think to pass on to you...I will.

    I am sure there is much we can do to help make our thyroids become more balanced and behave more joyfully and a lot of that information will come from fellow 'wonky thyroid' people.

    Enjoy the day!


    I love this Chinese proverb....

    That the birds of worry and care fly above your head...this you cannot change. But that they build nests in your hair....this you can prevent.

  • Brilliant saying.... just been for wonderful walk across Mendips with one of best friends of some 30 years, very precious and relaxing with whippets running...x

  • Hi, I agree with Celora, don't need surgery.

    According to me, if you are suffering from thyroid ailments then you should consult with Dr. Michael Valentine. His online address is huntingtonbeachthyroiddocto... You feel better again with his natural treatments.

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