Aches and pains

[Sylvia22]

I am having a blood test next week as I think my Thyroid level is too low. I am getting a lot of pain and soreness especially in my legs. Do any of you get this?

[Clutter]

Sylvia22, ask for ferritin, vitamin D, B12 and folate to be tested at the same time as musculoskeletal pain can be due to low/deficient minerals and vitamins as well as low thyroid.

[Marz]

Your Ferritin was good 5 months ago I see. So definitely get your VitD tested and the B12.... Both need to be towards the top of their ranges.

Also something should happen about your lack of conversion from T4 into T3. Maybe add some T3 into the mix if GP agrees.

[Caroxxx]

Yes my gp has reduced my levothyroxine as he thinks my TSH is too low. Initially he altered it from 100mcg daily to alternating it to 100mcg and 75mcg. Then he reduced it to 75 mcg daily I experienced pain and soreness in my muscles. I have increased my dosage and pain has soreness has improved.

[greygoose in reply to Caroxxx]

Ah, ok! Another TSH man. Once you are on thyroid hormone replacement, the TSH is meaningless unless it's high. The feed-back loop is broken, and TSH no-longer reflects thyroid status - if it ever did.

What is more, it doesn't matter how low your TSH is once you're on THR because you do not need it anymore. All it does is to stimulate the gland to make more hormone. If you are taking that hormone orally, then you Don't need any TSH. It has no direct effect on your bones, or your heart or anything.

I Don't expect your doctor to understand any of that, but I'm explaining it to you so that you can refuse to allow him to lower your dose due to your TSH. It is the levels of the FT4 and FT3 that count, and if he doesn't test those, he has no grounds for lowering your dose. However, if you have symptoms and feel bad, that is a reason for increasing it.

Your doctor is not there to dictate to you. He is there to advise you on your treatment - that might come as a shock to some doctors, but that's the way it is. Just say no. Lowering my dose will make/keep me ill, I do not agree. If you say nothing, he will take that as consent. It is very important to make your voice heard.

[MrsRaven in reply to greygoose]

Greygoose, interesting reading your comments on TSH. Id have thought that they make good sense, but even my endo seems to be obsessed with the fact that my TSH is lower than 1, and I am at risk of osterporosis. She wants to lower my levothyroxine.

[greygoose in reply to MrsRaven]

Endos are rarely specialists in thyroid. Their main interest seems to be diabètes most of the time.

That is what they learn in med school (thank you, Big Pharma!) and they rarely have a mind logical enough - or the interest or the inclination - to question it.

Just ask her how, exactly, the TSH controls osteoporosis - what is the process, the link, etc. If she has an answer, it would be interesting to hear. But I doubt she does - asking that question might actually make her think about it! And ask her for links, references, proving it. She won't be able to give you any, because they Don't exist.

It's not just my thoughts. If you read people like Dr John Lowe, they will say the same thing. And I have come across doctors who aren't interested in the TSH : an endo in the American Hospital in Paris, and a Hertoghe doctor, also in Paris, for example. Their exact words were : TSH, on s'en fou... (we Don't give a b****r about the TSH!) lol Even the man that invented the test now says it was rubbish.

[Talltexangal in reply to MrsRaven]

I have been at tsh .01 for 40 years and no complaints. Just make sure you get good vitamins and minerals

[Oliva1955 in reply to greygoose]

I am going to print this off so that I can educate my self with your knowledge as a back up when I get a negative reaction to my low TSH level . Can you recommend some reading material that may help me further under stand .

Where do you live in France? we use to visit our friend frequently in the south of France before we moved to The States , we are looking forward to having the time once we are settled to look to move to a warmer climate when we fully retire in two years

[helvella Administrator in reply to Oliva1955]

Have a look at diogenes' post:

healthunlocked.com/thyroidu...?

Not much use as a formal paper, but this is a researcher who has spent much of his life researching thyroid-related things. Including developing an FT4 test.

[greygoose in reply to Oliva1955]

Maybe this will help :

healthunlocked.com/thyroidu...

[MrsRaven]

Well your comments made eminent good sense to me. But then, i havent even got GCSEs so what would I know. My endo specialises in diabetes. I dont even think I'll see her again. As far as she's concerned theres nothing wrong with me except that my TSH is too low. It will be my GP I need to work on. I already asked her to explain the link between low TSH and osteoporosis, and she muttered something about leaving that to the endo. Anyway I am collecting ammunition from the forum, and various articles and if necessary I'll print it all up and give it to her to read.

[greygoose in reply to MrsRaven]

Ha ha! What a great get-out! Nice one, doc! Don't let her get away with it. Push the point. If she is saying that low TSH causes osteoporosis she should know why she's saying it. She shouldn't be allowed to get away with it so easily.

[MrsRaven in reply to greygoose]

I dont intend to. Shes away until the last week of this month, but I have a call-back booked with her to make an appointment to discuss my lab results, as thats the quickest way. Otherwise I'll be waiting till next month some time, and I have more bloods this week for kidney function as I am suffering badly from fluid retention and on diuretics. i am more and more convinced this is all due to the change of my levo from one brand to another. I dont want to antagonise her. so far, apart from my old GP, shes the one who has been most helpful, and my last surgery was dire once he left. A lot of their GPs weren't even fully qualified.

[greygoose in reply to MrsRaven]

That's true enough. You Wonder how they get away with it! It must be the only profession where you get away with knowing nothing about your job! It wouldn't happen in teaching or computer graphics, or anything else!

[Binkie]

my back, hips, knees, ankles and heels were excruitiating for 2 years, I had to give up running, riding, gardening and I was told I had chronic arthritis, the pain melted away once I was on NDT I have no idea how or why I just know I am glad to be out of sofa bound pain.

I do not understand all the symptom connections and have relied heavy on others to put me in right direction. Yours may or may not be thyroid linked but mine was, had I known few years back I would have been more motivated to get the pain sorted, I was given the advice by mr dr that it was going to get worse with hip and knee replacements in near future....I am so happy that was not true xx

[Hidden in reply to Binkie]

Binkie .....may I ask how much NDT you had to take to relieve the aches and pains?

I find this all interesting.

Way back in 2002 I was having trouble with muscle pain and reached a point where I could hardly walk.My GP sent me to a Physio for exercises for my gluteal muscles.I had also finally managed to get a thyroid test.After a six week course my Physio told me that she thought my problem was thyroid related and that when I started on Levo it would probably go.

My GP disputed it saying " What does she know .....She's a Physio " !!!!!!

Well,she was right and once on Levo it all gradually went and I was walking well again.

But ......on only 50mcgs it didn't last long before it came back again,but my GP kept telling me that there was nothing wrong with my thyroid.!!

If only I'd been a member of this forum at that stage and knew then what I know now,I would never have remained on a low dose for so many years!!

But the trouble is I didn't have the confidence or knowledge to dispute it.

So,I am convinced that being under medicated is a possible cause of all this muscular pain suffered by so many.

I would love to know how high a dose others had to take to be relieved of their pain?........I am on Armour but do feel I need to raise my dose.....will se my Endo on Monday and will be asking him about it.

Armour has been great for improved motivation and energy .....just want good mobility to go with it.

[Binkie in reply to Hidden]

i started on 1 tablet per day and gradually increased up to 4 per day, i have reduced back to 2 after a disastrous SST made me ill, i am gradually increasing again to get back to feeling well.

I noticed my pain had started to melt away after first few weeks on NDT my dr started prescribing 50mcg levo to me as i was improving so well self medicating, so i have a proper diagnosis on my records yay.

I was doing 50 levo+2 NDT and i think that was my best suited dose but i am working back up at moment xx

[kjc1tisdell in reply to Hidden]

I was also a physio.

and pe teacher.currently unable to walk. I'm going through an early menopause and the meds I was on don't seem to work now. im in terrible trouble. Endo sending me to chronic support group.

[kjc1tisdell in reply to kjc1tisdell]

Sorry meant chronic fatigue and fibromyalgia support group. Never referred to region. Going to see if I can get ldn script.

[MrsRaven in reply to Binkie]

Binkie, like you I was very active, but when I first became ill I injured my back trying to do things I shouldn't have been doing. The result is scoliosis due to 4 prolapsed discs, also spinal stenosis. The ortho tells me theres nothing surgical that can be done. But my back, pelvis, hips, legs and feet are increasingly more painful, plus I am losing feeling in my toes and soles of my feet. Its hard to decide whether the symptoms are from the injury, or something else. The GP wont order another MRI to see if my back has deteriorated, its seen as pointless because there is no treatment - also I suspect because I am 69 and not percieved as being useful any more. I am hoping that now I am on T3 the pain might improve.

[Binkie in reply to MrsRaven]

i am starting to wonder just exactly what do doctors do?? it seems fine if you are depressed as they happily hand out tablets for that but have no interest in anything further, I suspect this is not just no interest in thyroid as I have friends with illness or injury and they get the same round around..bit disheartening but at least we can exercise some control by self medicating..

I have a friend age 42 with serious bone. joint and spine problems from competitive weight lifting, they said nothing can be done, she is zonked out on strong pain meds, on crutches or disabled scooter, they wont give her new hips or knees as her back bad so no point!!!

I had no idea the health service was so unfit for purpose until I needed it! xxx

[MrsRaven in reply to Binkie]

Its been getting like this for the last twenty years at least, and is only going to get worse. There's a limit to how much self medicating I can do because my income is limited, which is what worries me.

[Binkie in reply to MrsRaven]

i pay for my NDT , vits and NAX and it is expensive, i am miffed at the amount iv paid in bags full of what turned out to be useless prescriptions. The silly thing is had my dr diagnosed me properly, it would have saved me and the NHS a fortune, wasted meds, xrays, appts, time off work etc..i agree it will prob get worse here in UK thank goodness i live partly in france, i will have to eventually bite the bullet and just use my french dr xx

[MrsRaven in reply to Binkie]

My old GP used to prescribe vitamins and minerals, but when they privatised surgeries that stopped. I have put myself back on roughly the same as he prescribed me, plus extra B12, but to get the proper ones costs a bomb. Because I'm 69 I get free scrips, but the only vitamin they will prescribe is liquid D3, on orders from my rheumatologist, the rest I have to buy myself - and they flatly refuse to prescribe T3. Like you, I have had bags full of useless meds that have probably been incinerated. Its not far short of criminal.

[Hidden]

Thanks for replying Binkie...I am sending you a PM