help. i'm struggling with knee and leg pains since taking levothyroxine for two years,

i had a total thyroidectomy two years ago in spain which may have been uneccessary. autobiopsy showed up nothing sinister and i had no record of ill health prior to this. since then i've been prescribed various doses of levothyroxine varying from 60 to 150m. changed every few months after each new blood test. during this time my health has deteriorated. brittle nails, bloating, weight gain, partly the result of constant hunger, high cholestoral, teeth grinding, tiredness, and relentless joint pain, especially my knees, which are so stiff and painful i can hardly walk at times.. i no longer bathe as getting out of bath is a problem, i'm also feeling depressed by my weight increase. my last blood test showed i was being over medicated,, but i'm sure i must be under now, although the decrease in med is only a reduction of 150m a week . i can see it's a vicous circle here, added weight not helping with the painful legs etc, lack of excercise, and comfort eating while i'm living the life of a couch potato. i'm starting to plan anything i do around avoiding climbing stairs, much walking, etc.and getting up from a chair i feel crippled.

i'm now 68, and it's tempting to think i've suddenly taken a nose dive into old age, but this doesn't feel right, as prior to surgery i led a very active life, was a standard size 12.( i now take dress size 16. ) and often worked very long hours.

i'm due yet another blood test next week, i use a group practice so i see different gp's each time i go there. nobody so far has seemed to listen to what is clearly a deterioration in my health, and it seems impossible to get the dosage right so i feel like myself again. i'm either sluggish and depressed, or overwound, and it would be good to know i don't have to spend the rest of my life like this.

i wondered if there's a meet up group in islington for anyone experincing this stuff?.

10 Replies

  • Hi there, cass, I'm the same age as you, and was in the same state as you one year ago.

    I have had a TT but it was 32 years ago now. I tootled along on 150mcg of Levothyroxine until I was 60, and then I moved to be near my newly-married son and changed GP. He decided that the dose of Levo I had been on for 24 years was too much and reduced it to 100mcg - even though I had been holding down two jobs, and running a house and perfectly fine if a bit overweight.

    After almost 8 years of suffering the consequences of his actions and being given a multitude of medications for the ill-effects of insufficient thyroid meds, I took matters into my own hands.

    Please do read my profile for my recent history. I am now almost back to normal, at first I tried to self-medicate but although some do it successfully, I was so ill that there were multiple problems.

    I took the bull by the horns and arranged a full blood profile privately through Blue Horizon, and then saw Dr BDP privately.

    My problems stemmed from various deficiencies which had built up due to under-medication, plus Levo-only replacement which may suit some but most TT patients need some T3 as well, because the strain of trying to convert the T4 to T3 with no thyroid can build up and result in adrenal problems.

    My problems were: Low VitD, low iron, low ferritin, low folate, adrenal exhaustion, and poor conversion of the Levo as a result. I had been taking B12 sublingually so I was not low on that.

    I had put on almost three stones in the nearly 8 years but already 24lbs of that has gone and I am functioning at about 85% now, not bad considering this time last year I could hardly stay out of bed for more than four hours.

    I think the first step in your recovery would be to have full thyroid profile tests plus the vitamins and minerals to see if you can improve your health by supplementing.

    With regard to the actual thyroid hormone replacement, you could ask for a referral to an endo, but you need to see one who is prepared to prescribe T3 which I am sure your GP will not because of your age - they are terrified of the stuff! I had underlying heart problems caused by the low thyroxine dose - yet the T3 has done wonders for me.

    Another alternative would be to go to Dr BDP for advice.

    First, though, would be to find out how your vitamins and minerals are. Again, if your GP is unwilling, then you could go to Blue Horizon.

    You can get a discount through TUK and also you can do some of the tests at home by a simple fingerprick.

    I do hope that with a little time and investigations, you can find the answer to your problem.

    Marie XX

  • thanks marie,

    your post was very helpful, as i was beginning to think i was going nuts. the med dosage has been changed after each blood test, although it doesn't seem a huge drop from 150m taken on alternate days to 125m daily,

    the weight increase really bothers me as i seem to have lost all will power and am always hungry. i feel like i'm totally out of control each time i try to diet and cravings are pretty intense too at times, although i don't do sweeties and cakes thankfully as i was also told i had high cholest. this year, so have had to work with a low chol. diet rather than take more medication . i hate taking any med in fact, so getting on a downward spiral of more and more drugs just isn't my thing and i'll do anything i can to avoid that. what you said about other symptoms developing as a result of deficiencies also worries me, and i fear what may have been going on unbeknown to me since my tt.

    i have an app. for blood test tomorrow, and with doc for results the following week, but this morning pain in back and upper arms so intense i put myself back on 150m of levothyroxine which i intend to take on alternate days again.

    glad to hear things have improved for you, 24lbs is a pretty good reduction. i'll do as you suggested and see how it works.


  • I like to try and listen to what my body is telling and I think craving is often that you have a shortage of what is in that particular food. I once had a terrible craving for prawn curry! Turned out I was short on zinc so its good advice to get your minerals and vitamins at optimum levels which should help your body in converting the Levo you are taking into the active T3. Don't forget Vit D as well. Mine was very low so was given a booster dose for 12 weeks and I now have a maintenance dose and latest reading were very good.

  • Hi there, I noticed you noted you have high cholesterol, I am not sure if you no this however having high cholesterol is not caused by what you eat? It's a myth, some patients with high cholesterol are actually healthy. Glad you not taking statins, I will find the link and send it you. Hence this is high because your thyroid is struggling. Hope this helps. X

  • hi merissa,

    i had no idea cholesterol. wasn't diet related., and look forward to receiving that link. thanks.

  • things have got worse since my original post. and i'm pretty close to a panic attack writing this.

    my body feels totally out of control. for past month ( three weeks into reducing from 150m to 125m levothyroxine it's like i'm falling apart. i'm experiencing anxiety, nausea,weakness and extremely stiff and painful joint and muscle pain,

    and constant tingling sensations in hands and arms.even sudden cramping in thumb when i couldn't use my left hand yesterday.eyes feel blurry. my body aches in various places , some of which seem to keep changing location from day to day.after getting to clinic for blood test this morning i fell asleep for four hours on returning, only three hours after i 'd had a full night's's almost feeling like a flu bug at times, except it's been going on so long but overall feeling is that something is very wrong with me and it's become a daily hell. has anyone had such drastic response or all of these symptoms in such short time? i can see a doc next week, but i'm t my wit's end and it's scary.

  • Hi cass88, I have had almost identical symptoms to yours.. the only difference is I only sleep for 2 -4 hrs maximum at night, but get approx 1 hr every afternoon. My panic attacks feel like electrical shocks through my brain. I thought I was losing my mind and was heading for dementia. Unfortunately, I cannot offer any advice because I too am searching for answers but wish you the best of luck in finding a solution. Fran.

  • Hi Cass,just found your post,as trying to sort myself out too.I see it was a while ago,are you any better now? Gill

  • Sadly many patients are like you

    Its vital that you post all your test results inc reference ranges

    but we do need


    Free T4

    Free T3




    Vit d3

    the last 4 are often very low in their ranges and that means you cannot utilise the levorthyroxine T4 and convert it into the T3 every cell in your body needs

    The other problem is that thyroid removal or destruction by RAI tends to mean you need

    Natural Dessicated Thyroid = NDT because it contains T1 T2 T3 T4 and calcitonin

    I do not know if this is available in Spain or whether you can import it

  • I had a thyroidectomy 1 1/2 ago. Gone on 125mg levothyroxine and like you I have experienced gain weight, high cholesterol and lately extremely severe joint and muscle pain. In the first year I also had many panic attacks which subsided when I was given lercanidipine for very high blood pressure. Which by the way appeared immediately as soon as I got out of the operating theatre.... During the op the surgeon said that my parathyroid gland took a bashing and stopped producing calcium. Was put on calcium tablets and when stopped about 6 months ago I now have these very severe joint and muscle pains. I am sure that something is totally off balance in my body but I find it extremely difficult to get proper advice from the gp who readily dismisses all my claims over the above symptoms. I think thst whst you suggest re going privately for blood test makes sense. The question is how do we help ourselves afterwards if you have an uncooperative gp on the nhs. I am not rich and I cannit afford to pay privately when I am paying already the nhs. I am desperate to hear your advice. Female 49yrs old. Thank you

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