aches and pains wont go away

been on thyroxine for 3 1/2 years now so why am i in so much pain all the time? i have aches running along my shoulder/neck and down my arms, in my thighs and my feet constantly. i only have to hold something for 5 mins and the pain in my arms is horrible. the doctor tested my blood and said thyroid levels are still ok but im 44 and feel 100 and it is getting me down, has anyone got any advice? My eye are also really dry all the time, i wake in the night and it feels like my eye lids are stuck to my eyes!

14 Replies

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  • One should never just accept the doctor's comment 'levels OK'. What does that mean? It doesn't mean anything. The best thing is to ask for the numbers - results plus ranges - ask him to give you a print-out, then you can post them on here and people will be better able to help you.

    From the sound of it, you are under-medicated, but it could be other things. What dosage are you on?

    Sorry to hear you are suffering like that but I'm sure someone will be able to help if you give us more information.

    Hugs, Grey

  • just been for more blood test, not sure what for this time, asked about T3 etc, got a print out of my result for last lot they are serum TSH level - 0.90mIU/L (0.27-4.2), no idea what that means, i've been on 50mg thyroxine.

  • So he only did a TSH test? That is pathetic! (I would say bordering on the criminal!) TSH (Thyroid Stimulating Hormone) is a pituitary hormone that the pituitary secretes to tell the thyroid how much hormone to produce.

    But there are lots of problems with using the TSH to dose a patient, such as the fact that the TSH always lags behind the actual needs of the body so you can't tell what the actual status of the thyroid is from that. Also, once you are on thyroid hormone replacement, the feed-back link between the pituitary and the thyroid is broken, so it's even less accurate.

    What he should be doing is FT4 and FT3, which are actual thyroid hormones. Even then, it's not 100% accurate, but gives you a better guide than the TSH alone. However, I know that the lab won't do these if the TSH is 'in range' unless ordered by an endo.

    So, yes, your TSH is 'in range', but is meaningless. And 50 thyroxine is a very small dose. It's a starter dose, just enough to stop whatever production your thyroid can still manage, but not enough to live on. Certainly not enough to be well on.

    It would seem to me that what you really need is an increase in your dose. But with a doctor who knows nothing about thyroid, you're not going to get it. Perhaps you could change your doctor? Or try and educate this one by insisting on your symptoms.

  • thank you for your adviuce, im gong back on monday for the latest results, hopefully they tested T3 & T4 which is what i asked for, ill keep you updated.

  • Hello, the same happened to me I had no aches and pains until I started taking the levothroxine and they just got worse and worse , 2 doctors said it was fibromyalgia and wanted to give me muscle relaxers etc and pain killer as I had constant headaches ! I came off the levothroxine and started on armour and the headaches and pain disappeared , I can now even walk the dog again , hope you find a solution xxxx

  • It happened to me too and as I increased my dose my foot pain got worst and worst...then it went to my knees and they swelled and swelled - I thought I would need to be in a wheelchair. Found out I was allergic to the fillers so then went on to Armour and the pain got even worst. It turned out I wasn't converting the T4 to T3 so now I take only T3. The foot pain has gone, I have some knee pain but I can walk and ride a bike etc. I'm not on the right dose yet but only started in November. Get some advice. You shouldn't have to be in so much pain and feel like a 100 year old. I know I felt that too. I felt like it was poisoning me. Good luk.

  • Hi Above too but also make sure you have had the other tests, especially Vit D, it could well be low. If low ( hormonal) then have a calcium test before treatment . It effects calcium and that must be in range always. Then start treatment at a reasonable level ( if pos. on a script) and increase after 3 monthly blood repeats. it will take a while but may be the cause of your problems.

    Jackie

  • Definitely get your Vitamin D tested and your B12. I had unexplained aches and pains and shoulder and back pain and sore feet etc etc and when I finally got the GP to test my Vitamin D it showed I was severely deficient. Since being on the supplements, things have vastly improved and disappeared.

  • he tested for vit d, its in normal range, hopefully todays blood tests will help

  • Thanks for putting your post on. I don't have any answers. But I hav exactly the same prob. I'm on 50mg. Got another docs appointment. Lets see what happens next. Are there any GPS that know about hypothyroidism.

  • keep me posted how you go on, ive just come back from more blood tests so hopefully they will find out why soon

  • Don't accept your GP telling you that your blood results are 'normal' and ignoring the fact that you feel unwell. As mentioned by other respondents, always get a copy of the results of any blood tests including the lab ranges. It can be quite revealing sometimes. What is normal for one person may not be 'normal' for another. It might be very helpful to know, for instance, if you are at the bottom end of a range (or indeed at the top end of a range). You can then point this out to the GP and perhaps discuss having a trial changing your medication or increasing/decreasing dosages or introducing extra supplements/medication - whatever your levels on the bloods results ranges might indicate is worth trialing.

  • I think Vit D may be the way to go..don't listen to the GP (!). My levels are 'within range' (whatever that is meant to be) however i ache continuously, shoulder pain is unbearable at times, weak arm joints, knee pain etc. Right this is where you all lose sympathy ( ha ha) I am in Florida on holiday, been here 10 days and guess what? No pains at all now, they have eased since second day of holiday and now i feel really good - can lift my granddaughter without wincing which is heaven. Still can't do my bra up at the back but hey ho. So...loads of Vit D, I really believe that is the root cause. Good luck, hope you feel better soon. Liz x

  • I have the same problem, I ache everywhere, it makes me walk like a very old lady yet I go to the Gym three times a week and have been doing so for over three years. If I don't go, if I get sick for a couple of weeks the pain and stiffness gets worse. My levels of everything are optimal now, Vitamin D right up top and this has relieved a lot of joint pain and swelling but all these other aches and pains and stiffness, what are they? My TSH is really low, below 2 and my T3 and T4 are right up at the upper end so much so that my GP wants me to reduce my medication! Iron and all that other general stuff is now optimal. What should I do next as I find this pain really difficult to deal with, it is so ageing and exhausting.

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