At the end of my tether

I'm so desperate for help. I had RAI in 2013 and have felt so ill ever since. My TSH varies between 0.25 - 12.5, it's never stable. My dose of Levo has been up and down from 50mg to 125mg. My joints and muscles are so painful and I can't sleep. My GP says I have Fibromyalgia but I'm not convinced its not to do with the Levo. I've asked for NDT and its been refused. My GP has prescribed iron and Vit D. Any help/advice will be greatly appreciated.

11 Replies

  • Hi I sympathise. I had RAI in 2015 and feel unwell. I am stable now on 125 levo. For a while I tried altering my dose of levo but that made me worse. I dont want to experiment on my own with NDT. Im not convinced its the answer. My TSH is 0.07 FT3 and FT4 are in normal range. The thing that has helped me the most is changing my diet. I am 6 weeks gluten free and feel better. I supplemented with vit D selenium and B12 for a month.I am relying on my diet now. I am beginning to think that the thyroid gland has a lot to do with regulating vitamins and minerals. I have to eat really well ALL the time. Supplements are not the long term answer. I'm finding it hard but the only way to feel a bit well. RAI is not medicine! It's barbaric. My biggest regret. Good luck. 😊

  • Hi. I really regret having RAI too. I thought I felt ill beforehand but it was nothing to how I've felt since. Thank you for your advice, I think I'll try the dietary route, I'm desperate.

  • Diet is the 1st step. Get that right then you can look at other things. Even after RAI we are auto immune. It's trying to get that calmed down, as we are prone to other autoimmune illness. My joints are bad and I have dreadful insomnia. The Dr won't help and my endo was a worse. "The office of dr brad shook" Facebook page has great videos. I found it really very helpful. He talks about Hashimotos a lot but we are all the same. Autoimmune. I'm roasting sunflower seeds as we speak! 😆

  • Our symptoms sound so much alike! I refused to see Endos anymore, they know nothing and even if they do, they're not interested. Time to take control myself! I'll take a look at that Facebook page, thank you.

  • The worst thing doctors can do is adjust levo or any other thyroid hormones to try to get the TSH 'in range'. It's a completely stupid method because the TSH is earliest around 6 a.m. and drops throughout the day. So why are they doing this I'd like to know!!

    Are you aware to always get the blood test as early as possible, fasting (you can drink water) and allow 24 hour gap between levo and test and take afterwards. This helps keep TSH highest and may prevent us from getting more symptoms.

    We have to read and learn in order to recover and it is possible. We have to read/learn and ask questions.

    Also GP should check B12, Vit D, iron, ferritin and folate as we can also be deficient which can also give us symptoms. Besides B12 and Vit D are prohormones and have to be optimum.

    Beside, I do not know how people who have had a thyroidectomy or RAI can function without T3 being added to their T4. Research has shown that T4/T3 combinations are more beneficial than T4 only for many people.

  • Thank you for your reply. I have a blood test next week and have asked for everything to be tested. Thanks for the advice on when to take my Levo and fasting, I've always been unsure when is the best time prior to blood tests.

    I've asked my GP about T3 but she refused. I wonder how anyone with chronic thyroid function can survive in this country when our health professionals are so blinkered about treatments!

    I'll post my results when I get them :-)

  • I believe all GPs have been instructed not to prescribe T3 but you can add it yourself if you feel it might improve your symptoms.

    This is from one of our Advisers whose team were successful in their scientific paper being accepted and actually won. There are also a couple of papers from elsewhere who've come more or less to the same conclusion, i.e. T4/T3 may be preferable for some patients.

  • Ah thank you, I'll add it to my list of things to look into. Your advice is much appreciated.

  • Had my RAI same year! Rubbish until I realised from this site that I neede T3 as well as levo(T4). So!

    As GPs and NHS endo are not allowed to give this I decided to go it alone and informed both that I would self medicate with Nature Throid. OK from both!!!! I started from 100 Levo cut to 50 with 1/2 grain NT for 3weeks and adjusted dropping Levo and upping NT every 3 weeks. Now on 21/4 grains. Got private blood tests to check T3 levels. Also did the vitamins as advised on here. Feel normal at last.

    Losing weight too. It's a bit pricey though. I will PM you with my source


  • Hi. Sorry for the delay in my reply. Very interested to know where you purchase your Nature Throid from, I want to self medicate but it's a bit of a minefield when it comes to buying online!

    Whereabouts are you in the UK? I'm in Norfolk and it's so hard to find a GP or Endo who will listen!

    Hopefully I can get this sorted and also get my life back, this isn't living!


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