Hi from a newbie

Hi, I'm new to this site. I live in Scotland,I was diagnosed with Graves' disease 2 yrs now.

My thyroid problems started with, thumping racing heart beat, sweating, nausea, like morning sickness panic, anxiety and my whole body shook and vibrated and it felt as though my blood was fizzing.

I phoned my GP, but there no appointments, so I saw the Practice nurse. She took my pulse and said my Bpm was 126. She took my blood and told me she would fast track the sample.

3 days later I got a phone call from my GP saying my levels were sky high and he was going to refer me to the Edinburgh Royal Infirmary Endocrine Department, but in the meantime I was put on Carbizamole tabs and 40mg of Propranolol.

I got my appointment for the Hospital really quickly and in the letter I was told to stop taking the meds the GP had prescribed. I saw Professor Ian Walker, he took more blood, just to make sure it wasn't a blip in my thyroid function. His test confirmed Graves' disease.

He told me that he was going to destroy the thyroid by sending me for a Radio Iodine capsule at another hospital, I thought another wait for an appointment, but no, by the time I got home I received a phone to tell me to attend Western General Hospital Edinburgh in 4 days time for the capsule.

Afterwards I had to stay at home for a few days.

Then after 4 weeks I went back to see Prof walker, more blood taken, and was told I was now under-active, so was put on Levothyroxine 125mcg, had to make an appointment for 6 weeks.

Went back more blood, was told I was on too much thyroxine, so it was reduced to 75mcg, then back again after a few weeks for more blood tests, not enough thyroxine, so was put on100mcg, which seems to be the correct dose according to the blood tests

I still don't feel 100% though, still have the blips of anxiety.

12 Replies

  • Welcome to the forum, Kittykia.

    Ask your GP receptionist or practice manager for a copy of your recent thyroid results and ranges (figures in brackets after results) and any results you have for ferritin, vitamin D, B12 and folate. Post the results and ranges in a new question and members will advise whether you are optimally medicated.



    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.

  • Thanks for your reply, will ask for a print out.

  • What all these endos haveforgotten is the old Swedish research which said that Graves Disease sensitises the body to very high levels of thyroid hormones and after RAI or surgery patients cannot exist on so called normal levels but need to be treated on symptoms

    your TSH should be well below 1 and free T4 and Free t3 in the UPPER Quadrant of their ranges

    be sure to get




    vit d3

    tested too because they must all be halfway in their ranges for your nody to utilise the levothyroxine correctly

    you may need T3 or you may feel better on NDT but the higher dose of levo you were on would appear to be more like it

  • Thanks for your reply, Iately I seem to be losing my appetite aswell. Also I tried to take a vitamin b complex and vitamin d, but felt 10 times worse, had terrible brain fog and headaches, while taking them.

  • could well be you have LOW stomach acid and need to take Betaine or Pepsin

  • I've just googled 'low stomach acid' and I don't have any of the symptoms it suggests. The last time I had reflux was when I had the morning nausea, before I was diagnosed, 2 years ago and I drank a couple of mouthfuls of soda water to combat the nausea and the reflux. Once I'd been put on the Levothyroxine the nausea and reflux stopped.

  • Hi kitty kit

    Welcome to the site. As you can see there are some very knowledgeable and supportive people on here.

    I too have Graves with hyper and Hypo symptoms.

    I went through all the same symptoms as you so understand. I sadly wasn't in remission for long once came off my 1st round of meds and am about to have surgery next Tuesday.

    I hope you can get your levels right and ask for the extra blood tests as mentioned above and keep on at the docs till you feel right. You know your body better than anyone.

    Take care


  • Hi snow31, it's a roller coaster ride isn't it? I felt much better on 125mcg, before I was dropped to 100 after my last blood test in June 2015, it was taken again a month later so I was kept on the 100mcg. People are very knowledgeable on here. I'm thinking of making an appointment with the practice nurse to if she'll take another blood test. Do you know if I could take up a fitness class , while on these meds, as the only exercise I do is walking my dog everyday and housework!! My endo said its rare for them to remove the thyroid, that's why is put me on RAI, but that may only apply to here in Scotland. I'm 57 and post menopausal, which is just as well cos I couldn't take hrt and thyroxine!!

  • Hi kittykia, sorry you are having a hard time. I have been through a similar situation to you. I had radio active iodine 6 years ago now. I am very glad I had it but afterwards it did take me quite a while to get the correct levothyroxine dosage and for my symptoms to stabalize.

    Unfortunately it can be a bit of trial and error, as someone else has already mentioned it can be best to go with your symptoms rather than just blood results.

    I still have my regular blood tests but with agreement from my GP I take medication depending on my symptoms. At the moment I take 100mcg one day and

    125mcg the next. I have been right up to 200 if needed before but am quite stable at the moment. If I don't feel quite right I change my dose depending on how I feel. Sometimes things like having a cold effect me and I change my dose. I have learnt over time how to manage symptoms and if I need to change things for a while. Keeping iron levels steady also makes a massive difference to me.

    I am no medical expert and this is just my experience. I have a good relationship with my GP who understands that whatever my bloods say I want to feel as healthy as possible.

    I hope things improve for you

  • A few weeks ago I did take an extra 25mcg, from a spare pack I had when I was on the 125mcg and I did feel better. Would a practice nurse need permission from the GP before she takes vitamin blood test, or can I just request one myself??

  • Hi, I think every Dr's surgery is probably different. I just ask for the tests I want when I phone to make the appointment. I think the nurse sometimes checks with GP but it's never been a problem.

    I am not sure you can ask for a test that's different from the one you have booked in for.

    If I don't feel great I often to just ask them to test everything including calcium, iron, folate, b12.

    Do you have an understanding GP? If so I would make an appointment to see them, explain that you did take a little extra thyroxine and it made you feel better. Hopefully you will be able to try different dosages to see what suits you. It's worth talking things through with the nurse as well, there are a few at my surgery but one in particular has a very good understanding of thyroid issues.

    I had anxiety too for a while which was shocking to me as I am not usually a worrier and things don't bother me too much. When I was hyper I was very anxious, you are on edge and high alert all of the time. It did take a good few months after the RAI for the anxiety to calm down. Remember you poor body has been through a really hard time, you will get there.

    Sometimes it's hard when you are not feeling well but I find if I can make myself be really assertive with the medical profession and tell them what I want and need and be confident about it, things have worked out okay.

  • It does depend on which GP has appointments, sometimes I don't see the same one. I had the anxiety and depression, I'm also on 50mg of sertraline for that. Think I will phone for an appointment with the practice nurse today.

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