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Chronic, ongoing muscle pain and joint stiffness....Is it hypothyroidism??

Posted , 7 users are following.

mrspinkrat
mrspinkrat

Hi all

I'll try to keep this brief!

I noticed stiffness a few years ago. I'm 45 and put it down to ageing. Last year I developed a muscle ache in my flank and rib age area. I've been scanned and tested with no real answers. Possibly chronic myofascial pain syndrome? Now I'm experiencing a dull ache below my shoulder blade and the stiffness continues to be bothersome. It can be a struggle to get out of a chair, up and down stairs etc. My mind is willing but my body isn't. I don't seem to have any flexibility. My fingers can be stiff and a lot of areas on my body can feel bruised/tender to touch. I'm searching desperately for a 'diagnosis' but it occurred to me today that perhaps these are symptoms of my hypo? No doctor has ever suggested it but is it possible? I've been on 75mcg Levo for 2 years. Does anyone else have these symptoms? I'd be very interested as I am a big worrier and have spent so long looking for answers!! Thanks all xx

0 likes, 28 replies

28 Replies

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  • patricia20016
    patricia20016 mrspinkrat

    Posted

    Hi I've been on Levo for 3 years and I had a total thyroid ectomy 3 years ago since then I have been in agony with pain all over my body but mainly in legs they are shocking feel like lead weights and I

    Too can't get up off the settee and have trouble both going up and down the steps so much so I have got a blue badge I'm that bad I'm under the endocrine doctors now a professor but I have also been to see a neurologist to out rule MS and also had long needles put into my muscles to see if there is any muscle wastage with electrodes put into them but it was clear funny enough I'm back seeing neurologist tomorrow afternoon but I think she will discharge me as I'm waiting now to see rheumatoid consultant but a long waiting list I'm sure they will find something this is not Normal as I could walk properly before I had the operation. Sound like me totally

    Trish

    • katejo11
      katejo11 patricia20016

      Posted

      Hi   i have been on Levo for many years (hypo since birth). i had a thyroidectomy 11 years ago. I started to get the aching calves and feet in 2009. I put it down to menopause approaching at the time but have now begun to think that it could be thyroid changes due to menopause. I had a neurology appointment this week and got the chance to speak to the consultant about thyroid too. He recommended that i see an endocrinologist. My legs are not as bad as yours. I am not disabled at all but it spoils my enjoyment of walking.
  • LAHs
    LAHs mrspinkrat

    Posted

    Well, my general overview of this problem (which I have had) is the level of your medication. Perhaps if you have been on 75mcg for 2 years you could have put on a bit of weight and moved out of the 75mcg range and need a bit more medication. Your doctor may be medicating you to TSH, that will guarentee that you are under medicated, that's what I ran into twice with my docs. A third possiblity is that they could have changed the manufacturer or the formulation of your Levo. That happened to me once, my first pill was just fine, when they discontinued that one I never found a brand that would not give me aches and pains.

    So there you are, three possiblilities. 

    The  thing that cured me was to change to a Natural Dessicated Thyroid (NDT), Armour to be specific. You may not be able to get this on the NHS but at least ask your doctor for a prescripttion and then "shop around". You can buy it from the manufacturer via the internet with a prescription. It cured me of all of those symptoms within half an hour of my first pill. After a while I got aches in my thighs creeping back so I upped my dose a little, by 1/4 grain, from 1 1/4 to 1 1/2)grains.

    If you experiment with doses, only give it two months to work. Do not keep going for years feeling ill, if things haven't changed in two months then they will probably not. You will have to be a real pest with your doctor, we all are, it takes a lot of energy and tenacity on the part of the patient to get to feeling well.

    • mrspinkrat
      mrspinkrat LAHs

      Posted

      That is really interesting full! Do I stop taking the levothyroxine if i start the NDT? Is it safe and/or legal??

      I think it's unlikely my doctor will give me the go ahead but would really like to give this a try. I'm not very pushy though...

      Thank you!!

    • LAHs
      LAHs mrspinkrat

      Posted

      NDT is safe and it is legal. It is hard to get without a prescription but eventually you will find a doc who will prescribe it. Do try your own doc first though, he might have read something about NDT. 

      Now, you are supposed to start low and gradually work up the dose until you feel well. 60mg(1 grain) of NDT is about 100mcgs of Levo so you might want to start out on 1/2 grain, this would be a little lower than what you are taking now (75mcg Levo) but you will also be getting T3 along with the T4 which Levo has been supplying you with. See how you feel and increase to 1 1/4 grains after a couple of weeks.

      As far as being pushy is concerned, I wasn't either until I almost died doing what my doc told me to do. I was so mad I went knocking on doors of my medical insurers office demanding a doc who knew what they were talking about! Be careful, many Endocrinologists are known as "good" because they are good at diabetes, they are hopeless, however, with thyroid. Those of us who have crawled out of this black hole have changed doctors many times and sometimes have to travel a long way to find a good doc for thyroid problems. It is a bit awkward to do this but you get to a point where anger overcomes embarrasment, and then your health starts to improve.

      There is a list of doctors in the UK who are aware of this scandalous situation and you can find it in an organisation called TPAUK.

    • barbara98940
      barbara98940 LAHs

      Posted

      When you look at the list from tpauk tgnore the nhs ones. The rules have changed and the CCGs no longer allow NDT to be prescribed, so don't waste time going to nhs ones like I did. Go straight to a private endo.
  • patricia20016
    patricia20016 mrspinkrat

    Posted

    Hi I've been on Levo for 3 years and I had a total thyroid ectomy 3 years ago since then I have been in agony with pain all over my body but mainly in legs they are shocking feel like lead weights and I

    Too can't get up off the settee and have trouble both going up and down the steps so much so I have got a blue badge I'm that bad I'm under the endocrine doctors now a professor but I have also been to see a neurologist to out rule MS and also had long needles put into my muscles to see if there is any muscle wastage with electrodes put into them but it was clear funny enough I'm back seeing neurologist tomorrow afternoon but I think she will discharge me as I'm waiting now to see rheumatoid consultant but a long waiting list I'm sure they will find something this is not Normal as I could walk properly before I had the operation. Sound like me totally

    Trish

    • mrspinkrat
      mrspinkrat patricia20016

      Posted

      Sorry you are in so much pain sad

      I just feel that if I had an explanation for my pain I'd be able to cope better...At the moment I'm imagining all sorts sad

      Take care xx

  • shellyC19
    shellyC19 mrspinkrat

    Posted

    Hello Mrspinkrat:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's since 1987. 

    Many people who have thyroid pain do have muscle aches and pains.  It is been known to happen and some people bruise badly, having no contact with anything. Sometimes the thyroid dose has to be changed if the TSH is bad.  Other symptoms are feeling cold, sleepy, brain foggy, constipation, brittle nails, low body temp, weight gain, low heart rate.

    You could have what they call Polymyalgia which means  Mutliple muscle pain.  Now the treatment would be steriods or muscle relaxants.  The bad thing is steriods can cause brittle bones.

    You can take a Non-steriodal medication like Naporoxen Sodium, and take it 2 times a day.  Make sure your TSH,  T4 and T3 levels are okay.   Vit D is also a factor if it is low, it can make muscles hurt badly.

    See a Rheumatologist who knows Arthritis and have that checked out.  It has been known to develop in the middle age years of 40 to 65.

    I do have some Arthritis Osteo type and I am 54.  You can be tested for Rheumatoid Arthritis by a blood test.

    Keep us posted on how you do,

    Shelly

     

  • loueh
    loueh mrspinkrat

    Posted

    Some people cannot tolerate levo and it gives similar symptoms to having arthritis. In complete desperation, I stopped taking my levo and found the muscle aches diminished within a couple of days. I'm now on T3 only.
    • mrspinkrat
      mrspinkrat loueh

      Posted

      I would love to try this. I understand Levo has a fairly long half life. I'm currently taking 75mcg daily. How long could I safely go without taking it do you think? Xx
    • barbara98940
      barbara98940 mrspinkrat

      Posted

      I had to stop taking levothyroxine when I became intolerant to corn/maize as all of the synthetic thyroxine tablets have maize starch in them. I itched all over my body. After 7-10 days I started feeling so rough I restarted taking it despite the itching! Luckily I then found ThyroGold and was able to stop taking levothyroxine completely.
    • loueh
      loueh mrspinkrat

      Posted

      I was on 100mcg. I felt an immediate improvement after 2 days off levo so I didn't go back on it. I saw my GP after a couple of weeks to explain what I'd done, she referred me to an endo but there was a 6 month waiting list. I cracked and bought myself a private appointment with the endo after 2 months. By this time I was falling asleep after lunch and my TSH was 96. Not sure I'd have survived a 6 month wait. However i no longer had pain in my muscles and joints which was fantastic.
    • katejo11
      katejo11 loueh

      Posted

      Were you taking any other type of medication at the time? Are you in the UK? I might try not taking the Levo just for a couple of days just to see.
    • katejo11
      katejo11 loueh

      Posted

      Also what did the private endo do? Have you now got to pay for drugs privately?
    • loueh
      loueh katejo11

      Posted

      In the UK. Not taking any other medication. My GP had sent me for lumbar puncture, MRI etc. to investigate the worsening muscle and pain issues that had been growing for a couple of years. I wanted to die. I had gone on a meat fish veg water diet. Then a little lightbulb went off that the only 'external' thing that i was doing was taking levo. I felt instantly better. Of course this might not be your problem. A couple of days of not taking my pills proved it to me.
    • loueh
      loueh katejo11

      Posted

      The private endo is the same as the one I was booked in to see on the NHS. But instead of waiting 6 months I could see him that Tuesday. He wrote to my GP who prescribed the T3 he advised. I kept the original 6 month appointment and since then I have been followed up in his NHS clinic. (Which of course is deeply unsatisfying - 5 minutes consultation - no discussion). My birthday is coming round again (2 years after initial private consultation) - I'm thinking of treating myself to another one. I no longer have pain and function much better on the T3 only but i find the dose seems to 'wear off' and after 6 months of subfunctioning they sometimes relcutantly increase it by 10  mcg. I shoukd give up on them really. I slo paid for antibody tests as a birthday treat as they don't do those on my NHS.
    • katejo11
      katejo11 loueh

      Posted

      You should give up on the NHS or on the T3? I haven't taken my Levo today and won't tomorrow, just to see if it makes any difference. I also think that mine could be menopause related. Perhaps I need the T3 because of that. I am waiting for my GP to get a letter from a neurologist who recommends that I have an endo referral. Do you mind me asking how much you had to pay for the private endo visit? I was born with underactive thyroid and haven't had problems for most of that time.
    • mrspinkrat
      mrspinkrat katejo11

      Posted

      Katejo, I also wonder if my muscle pain is menopause related. I'm 46 and am apparently post menopausal as I haven't had a period for nearly 2 years. My only Meno symptom appeared to be night sweats but I've also had 2 years of stiffness and muscle pain. Is it my thyroid? Menopause? Something else? I'm so fed up sad
    • barbara98940
      barbara98940 katejo11

      Posted

      It cost me £150 for first visit to the private endo and £90 thereafter.  In UK.
    • barbara98940
      barbara98940 loueh

      Posted

      Loueh, If you do get prescribed 10mcg of T3, take 5mcg in morning and 5mcg about 7 hours later as it wears off after 6-8 hours.  I am on NDT and I split the dose for the same reason.  If I'm doing something late in the evening I need to think for, I delay the afternoon dose by a couple of hours.
    • katejo11
      katejo11 mrspinkrat

      Posted

      Hi Mrspinkrat I am almost 53 and haven't had periods for 2 years. My calves started aching in early 2009 just as my periods were becoming lighter and much shorter. The aching gradually spread to my soles/balls of feet. I thought it was menopause and have only just started to link it to thyroid.
    • mrspinkrat
      mrspinkrat katejo11

      Posted

      Hi Katejo, I have the feet thing too! Stepping on the floor first thing in the morning is awful. It does wear off but its a strange one!
    • loueh
      loueh katejo11

      Posted

      It was about £150 one off. Then same guy on the NHS. and all prescriptions on the NHS. I bought the antibody tests for my brithday - they were expensive about £250 but they wouldn't have been done on the NHS. Interesting to know it was hashimotos but the results have never been used in my treatment so a bit of a luxury that with hindsight I wouldn't have bothered with. I meant give up on accepting their advce and selfmedicate. Not the T3. I'd be asleep by lunchtime if I took nothing. 
    • loueh
      loueh barbara98940

      Posted

      I take my 40 mcg in the middle of the night. I used to spread it out but found that had no benefit and the dose I used to take when I woke generally sent me back to sleep. Taken it that way for a year or so now.
    • katejo11
      katejo11 mrspinkrat

      Posted

      Yes mine wears off a bit but never goes completely. My favourite exercise is walking/rambling but my feet really ache if I try to do more than 8-10 miles. Have you ever had your Vitamin D levels testing? I haven't yet but may do.
    • barbara98940
      barbara98940 loueh

      Posted

      Hello Loueh, I'm confused. Is that 40mcg if T3 that you take in the middle of the night? Levothyroxine (T4) I can understand being ok, but I'm surprised at T3 being taken in the middle of the night. Plus 40mcg of T3 is a large dose???
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