Hi there

I don't post very often but i'm always reading the posts for information. I am on 125mg Levothyroxine - but have always struggled with severe muscle and joint pain and was diagnosed with Fibromyalgia about 8/9 yrs ago. Just recently this has got much worse and now involves burning sensations in my feet and lower legs and sometimes my hands and lower arms. I always have pain in most of body but now my neck shoulders and back of my head are painful too. I was diagnosed with asthma last year and also have sleep apnea & noctural seizures (but none since January fortunately!). Had a replacement hip last October and still having to hobble on sticks for any distance too.

What a complete disaster I am!

I have seen several GP's at the surgery ove the last couple of months who say my BP is good -my chest is clear - it is just an unexplained problem or Fibro! I have seen every consultant there is to see over the years - even a Pain Management doctor - but all I get is another lot of painkillers - which incidentally do not help and just mask the symptoms!

I saw the GP on Friday and she said my thryoid was low so to increase levo to 150mg alternate days which I have done since then. I did forget to ask for the print out - but I will get on Friday when I am going yet again! I did ask to try some T3 but she said to try this out first.

The pains are unbearable sometimes and after sleep I feel worse than I did when I went to bed. I also very often have to sleep in the daytime for 2/3 hours as I feel so dreadful and exhausted. I have had this before but now the pain in my back and everywhere else is a lot worse. They keep coming back saying its probably my fibromyalgia and I'm supposed to be seeing a specialist nurse who deals with this but in the meantime I'm trying to live!!!!

Anyway to get to the point I am seriously thinking of trying Natural Thyroid as I am sure that I'm either not tolerating levothyroxine or its not converting as whatever I do i cannot lose weight despite being on a Why Weight programme through NHS and seeing a dietician and having an exercise programme which I attend but spend the rest of the week feeling awful.

I really have to push myself to do things everyday and even walking around the house is agony! And they have the cheek to say "Hows your mood?""!!!!!! What do they really think!!!! Here take some amtripitiline ! No thanks been down that road.

My question is How /Where do I buy Natural Thyroid - which is the best to take ?? as I see so many posts on here about several different types and I am totally confused.

So sorry for the long long blog but I had to get that off my chest !

I will post my results when I get the print out asap.

Thanks for reading

Yours in agony

8 Replies

  • Hi, sorry to hear about the pains.... Could be due to all sorts of things... B12 and d3 are the first that spring to mind, followed by low thyroid and therefore low t3.

    You are on a moderate amount of thyroxine, unless the free t4 levels are top end of the range, you may not be able to convert it into t3.

    Suggest you get the print outs and check free t3, free t4, b12 and d3 for starters. If the doctor won't play ball there was a post on here earlier from blue horizon, who are offering a great set of tests fot £99.00.

    Self treating with NDT can work ( it does for me) but its not a step to just be undertaken lightly, specially If you don't fully understand how it all works. People always seem to underestimate the significance of vit and mineral levels, especially doctors.

    Time to start testing and get all the levels up.

    Xx g

  • My husband , daughter and 3 of 4 granddaughters all of them get horrendous joint and muscle pain on levo or T3

    yet on NDT they are free of it

    have sent you a PM

  • Sounds to me like you have some bad nutritional deficiencies, as galathea said, it's not just about hormones. You need to get your vit D, vit B12, folate, iron and ferritin tested. But while you're waiting, try taking about 450 mg magnesium and about 20 mg zinc. If you are low in those that will cause muscle pain, and most people are low in them.

  • Thank you grey goose

    I will look into these & also post my blood results after I see the Dr on Friday

  • OK :)

  • I had the most awful deep, deep pain in my hands, feet, arms and legs, it felt as if my bones ached - this has eased quite a bit now that I am on prescribed vitamin D and B12 injections. All my joints ached badly too. I had to make quite a fuss to get my vitamins tested as all my (old) GP would offer was a referral to a Pain Management Clinic and, yes, antidepressants etc.

    Fibromyalgia was mentioned once at one of my appointments but, thankfully, my (new) GP seems to recognise this as a symptom and not a diagnosis.

    The pain has not gone away completely, and is definitely worse if I do a bit too much (nothing major, just an extra 30 minutes light gardening or one too many visitors in a week), and is most noticeable if I am sitting down or in bed.

    Some of the pain has also been related to a different auto-immune nerve disorder that I have as well, which doesn't really help.

    It would be nice if your GP could actually get you tested for vitamin/mineral deficiencies.

  • Hi Beansmummy

    Thank you for your reply. It seems you have experienced the same pain as me - I'm taking b12 & VitD

    & am picking up test results tomorrow- yes symptoms much worse in bed & after sleeping!

    I am seeing a neurologist in August & also just got appt for specialist fibromyalgia nurse too.

    Out of interest could I ask what is the other auto immune nerve disorder you have?

    Im going to ask for vit/min tests etc as I'm seeing a new GP .

    I've had to use my TENS machine this am as hurt so much ! But better than taking too many painkillers!!

    Will post my results

    Thanks again

  • It's called Peripheral Nerve Hyperexcitability (PNH). It was eventually diagnosed after various tests, and watching my muscles twitch.

    Since being on vitamin D and B12, several of my symptoms have lessened, but the twitching muscles haven't. I didn't realise that the pain I had was associated with the PNH, but the neurologist thinks that some of it is.

    It is very hard if you have several health issues, because so many of the symptoms overlap. I could probably write a book. The vitamin D definitely eased the deep "bone" pain (the only way I could describe it). The B12 seemed to help with some of it too. I assume that the continuing pain I still have is probably the PNH, but who knows. Unless I continually get blood tests to check my thyroid and vitamins, which the doctor isn't going to do, it's a bit hit and miss really.

    It will be very useful to know what your D and B12 levels are.

    What does a specialist fibromyalgia nurse actually do? I hope it isn't a variation of "you have to live with this".

    Does the TENS machine help?

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