Does anyone on here have myositis as I'm worried I may have this condition as I have aching muscles most of the time. Don't know if it's side effects of high dose statin I'm on or possibly myositis, but either way,it's making me think there's no hope for my future.
Myositis : Does anyone on here have myositis as I... - Thyroid UK
Myositis
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sobs1962
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SeasideSusieRemembering
Lots of mention about statins affecting muscles if you Google "statins muscle weakness" including myopathy mentioned by the NHS as a side effect
nhs.uk/conditions/statins/s...
Have read this multiple times but the doctors haven't taken my hypothyroidism into account in any way shape or form as they seem to think that hypothyroidism is a minor health condition that gets better on its own and they certainly haven't thought about the potential for serious side effects of statins as,they just haven't got a clue.
RedAppleAdministrator
sobs1962, As SeasideSusie says, statins are a known cause of muscle problems.
If your muscle problems started following instigation of statin treatment, that may well be the cause.
Thyroid hormone, whether too much or too little, can also cause muscle pain, weakness and stiffness.
SlowDragonAdministrator
nhs.uk/conditions/statins/c...If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Suggest you stop taking statins and see if muscle pain stops
I have been told under no circumstances to stop taking my statin. Have a blood test tomorrow at doctors to check my creatinine kinase levels as if they're very high, it could be because of my statin, however severe myopathy (rhabdomyolysis) is a very rare side effect of statins affecting about 3 people per 100,000, but I'm still not ruling it out, as I am one of the unluckiest people you'll ever come across.
What do they tell you will happen if you stop your statins?
They just said that my cholesterol level could become lethally high , scare tactics, so big pharma can make trillions more dollars/pounds but doesn't help me especially as my anxiety is the highest it's ever been.
That's wicked! Really evil. Well, if it were me, I'd take my chances with the cholesterol rather than the statins!
That was my frame of mind before my stroke, but now, I'm just terrified of dying.
I can understand that. But, no matter what they say, it wasn't cholesterol that caused the stroke.
I think they'd dispute that as my carotid artery was 90% blocked, atherosclerosis is caused by build up of plaque in the arteries and apparently the biggest offender is cholesterol, at least that's their story and they're sticking to it, but my last lipid profile had my cholesterol at 4.2 and the range is simply <5, which it is, unless they can prove its now risen dramatically, although my triglycerides were higher than they should be, so they'll just class that as high cholesterol, because it suits their agenda, to do so.
And just so you know ,apparently GPS are rewarded financially, the more statins they prescribe according to Dr Malcolm Kendrick(The Great Cholesterol Con),so we have got very little of resisting it, as they'll find a way to get almost everyone on statins, whether they need them or not, it's truly evil.
Cholesterol is the body's sticking plaster. When an artery is damaged by inflammation (and being hypo can cause inflammation, which is why Dr Broda Barnes says that the maind cause of blocked arteries/heart attacks/etc. is under-active thyroid) cholesterol comes along and covers the wound until it heals. When the wound is healed, the cholesterol is absorbed into the cell walls - because that's what they're made of, anyway.
Yes, I do know that GPs get financial incentives to prescribe statins. But, just because they prescribe them doesn't mean you have to take them.
I will be having a long discussion with a doctor from my GP practice in the next few weeks and I intend to let him know, that I'm not happy about my hypothyroidism being rode over roughshod. I really don't know what we( the little stupid people as I'm sure they see us) can do to make them understand as they genuinely believe that we haven't got the brains to understand how the body functions or not as the case may be. It's all about controlling the masses,by not educating them, so they're not a threat to the elite in society.
Pity the the doctors themselves aren't better educated then!
Have no idea how they know how many suffer with side effects. It is well documented that when so many people suffered unpleasant side effects they were removed from the trials. I will try and find the link ! I would read Dr Kendricks Blogs and also take time to read the brilliant comments ....
Hello Sobs1962 What were your latest blood results for thyroid? I only ask as a month ago you posted bloods with over range T4- In 30s? I’m sorry if I missed something on your posts- my T4 is over range at the moment ( but low T3) and I’ve had tremendous problems with severe muscle weakness and intermittent pain etc. Red Apple has mentioned earlier about this.
Could this be it?
Apologies if I missed more recent bloods
sobs1962 in reply to
Yes, my last blood results were done by MMH, but unfortunately any other bloods done whilst in hospital, do not appear on Patient Access account as only those done at GP practice are shown on there. However, I spoke to a doctor last week on phone, un whose opinion, I am "over-replaced " and can only assume, he means because of my suppressed TSH. By the way my T4 was high, because I took my levo and forgot I'd taken it and did the blood test about 5or 6 hours later. My T3 is highly unlikely to improve as I am on Propranolol and Lansoprazole, both of which block conversion. Do wonder how much more unwell, I need to get before someone actually does something, or maybe they're quite happy for me to die, as its one less complex patient they have to deal with.
in reply to sobs1962
Hi Yes I’ve had same issue with not being able to access hospital bloods. Still seems very high your T4 even though bloods done 5 hours or so after but I’m no expert on that.
I’m so sorry you are feeling really unwell. It’s very frustrating when you feel like you’re being left to suffer. It’s distressing.
I do hope you start to feel better and get help you need, and deserve.
sobs1962 in reply to
Thanks, for that, can only try to keep hope alive.
sobs1962 in reply to
Been to doctors surgery today and they've done my thyroid bloods with no prior warningbloods done at 4pm after eating both breakfast and lunch and while taking a biotin containing supplement and levo taken at 6am this morning, the results will be completely skewed and a levo dose reduction is inevitable, so within a few weeks I will be incapable of doing anything, plus ,I'll be freezing all the time, but they honestly couldn't care less.
in reply to sobs1962
Gosh no warning! You can’t win can you? I ‘get’ the freezing- so unbearable. I cannot wait for warmer weather- it makes me poorly every winter so I fully sympathise. Assuming it’ll be TSH and maybe T4 bloods.
sobs1962 in reply to
I expect it to be TSH and T4, never T3, as if they test it and its really low, it might mean they have to prescribe Liothyronine and they won't do that because of the cost and it's only so high cost because the pharmaceutical companies have managed to find a loop hole in the law regarding the pricing of drugs and our stupid government has allowed them to get away with it, despite it being brought up in the house of commons many times ,over the last 20 years.
Getting my T3 high in range has taken my cholesterol down from 8.1 to 6. Statins gave me dreadful muscle cramps in stomach. What is your T3 level like? High cholesterol is a symptom of hypothyroidism so getting it adequately treated is a route to improving cholesterol.
My last results, done through Monitor my health on 06/12/21TSH - 0.02 (0.27- 4.2)
T4 - 31.5(12-22) Stupidly took my levo at 6am and forgot I'd taken it.
T3 - 4.2(3.1- 6.8) Unlikely to get higher as on both Propranolol and Lansoprazole, both of which block conversion.
Overall Comment
Please note,TSH, is the most important parameter when considering efficacy of thyroid hormone replacement. A decision to change treatment is based on both laboratory test and clinical considerations and should be made only in consultation with your healthcare provider. Your results indicate you may have a mild form of underactive thyroid,known as Subclinical Hypothyroidism.This normally does not need treating at this stage,but indicates you should have your thyroid hormone levels checked regularly in the future. We recommend repeating this test in 3-6 months. This interpretation is based on the assumption you don't have a preexisting thyroid condition and/or receiving thyroid treatment.
Wouldn't you think that a suppressed TSH would raise a red flag but of course, I forgot the NHS seem to think that TSH is a thyroid hormone and not a pituitary hormone, so sorry for long post, but I just despair with the whole situation.
Very sorry to hear you recently had a stroke, and glad you took Helvella' s advice to check out the numbness/tingling in your face . Did they say the cause was a blocked artery in you neck, and you need an operation to clear it , or was that someone else i was thinking of ?
If it is a blocked artery , are they saying statins will be needed keep you safe in the short term despite the downsides of them ?
Does a 'blocked artery' as a cause mean that they are not blaming your stroke on supressed TSH /high T4 ?
Sorry for the 20 questions.. i'm just interested to to know what they are saying to you about it .
Really hope you are recovering from the recent stroke without too many lasting effects
Unfortunately, my hypothyroidism doesn't appear to be relevant to them at all. Yes had a blocked carotid artery and operation to unblock it, but like I say, they're not taking my hypothyroidism into account at all and probably blaming it on years of smoking and drinking heavily, but now on highest dose Atorvastatin (80mg), and yet again the fact that those with hypothyroidism are much more likely to have serious side effects, hasn't been taken into account. It looks like they're not bothered if the serious,side effects have the potential to kill me,as they appear not to care, probably think, I deserve what's happened to me as I've abused my body for years.
Mm even taking into consideration you’d taken your levo, the t4 looks terribly high. I didn’t like having t4 over range so reduced levo and added in t3. Am definitely stronger now with a spring in my step. And as I said cholesterol has much improved. Frankly I would avoid statins and lanzaprole if you possibly can - both massively impact thyroid absorption. Read Grey goose on statins.
You're absolutely right, but it's the usual story,I'm the doctor, I know everything, you're the patient, you know nothing. Love to know how you got prescribed T3 as it's nigh on impossible in the UK.
I got it at Kingston hospital. Endo was happy for me to give it a try. I have since sourced extra from abroad as many do here.
Do you mean Kingston upon Thames or Kingston Jamaica, it's just that even getting any doctor including an endocrinologist to agree to trial is almost impossible in UK, due to cost .
There’s over 57,000 prescriptions for T3 in England in last year on NHS
openprescribing.net/analyse...
Roughly where in U.K. are you
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
Kingston upon Thames. I’ve seen in here someone posted a map and figures of T3 prescriptions in the U.K. - it was quite a lot. But I know it is hard from what I heard. If and when mine is taken away I’ll self source it. I think the prescribing refs did change recently re T3 - maybe worth asking a new question about it.
HiMy hypothyroidism/Hashimoto’s main symptoms (I think) are muscular problems… I’m in process of trying to figure this out with an endocrinologist who was very up for looking at everything (couple thousand pounds worth of bloods done via my health insurance) although just doesn’t think it’s my thyroid, I’m starting to wonder if he’s right.
I have been tested for Lupus, RA, myositis and numerous other things and the Mi2b antibody test came back slightly positive (may mean nothing) this I’ve identified as dermatomyositis and I’m being retested in April. I’m guessing to rule out a false positive from the lab … however the endocrinologist doesn’t think my particular muscular case is related to thyroid after sharing papers with him on similar cases.
I have episodes when stiffness is so bad I can’t move to get out of bed, a constant dull ache along with spasms in my hip, pelvis, sij and lower back, which knocks me out of action for weeks if not months at a time… I can’t dress myself it takes a while to get to do basic of things.
What we did find is my TSH could of been better my FT3 was low but my FT4 was in upper area generally, GPs would never budge in trying more meds hence seeking out some answers… it’s been hard slog trying to even get them to refer me as we’ve ruled out areas like various nutritional deficiencies and lowered my HB1ac as it was creeping up, but not quite prediabetic area… lost couple of stone but so hard and actually had more episodes in that time of losing weight.
I also have elevated creatinine levels had kidney scan can’t see anything all other areas ok…I’m lead to believe reading literature on under active thyroid we can have an increase of creatinine too.
My CK wasn’t very high nor uric acid and I don’t have very much inflammation regarding the CRP or ESR tests.
Endocrinologist wanted me to see a Rheumatologist which is still a possibility.
In a weeks time I’m due to have blood work done as will have been on Morningside Liothyronine T3 10mcg a day and 100mcg levothyroxine for 6-7wks, as alternating just levothyroxine to 125mcg made my FT4 go slightly out of range and TSH but did nothing much for my FT3 hence a trial of T3, I’m clearly not converting as many coeliacs don’t apparently … maybe I need more T3 I can’t say.
Honestly it’s not been the magic pill yet, I have still had some restrictions but far less but at times I have less anyway, so it’s a hard call on it, given it’s supposed to be fast acting drug I think I was expecting more…
I noticed as I wear fit bit my heart rate went up a bit first two weeks and I lost few pounds in weight.
However as long as my next bloods don’t prove a problem regarding levels, I will hopefully give it another go for a couple of months… I don’t expect after 7wks of a drug v nearly 10 yrs of being like this to see a miracle in this area.
I would of liked to see if my blood sugar and creatinine levels have had any impact whilst on it, but my annual review for these aren’t until May, so no idea if I will still be on them.
Look up Dr Aseem Malhotra a leading U.K. cardiologist re statins.
Statins are widely known to cause more problems especially muscular aches, than they fix!
At most some patients have poor quality of life on them long term and the quoted extra longevity by taking this drug is very low in reality.
Many come off statins because of the side effects.
Dr Malhotra explains this, there’s many YouTube videos to choose from… he has a website too.
It's absolutely ludicrous that we have to fight so hard, to get taken seriously because of of the way that doctors are trained, someone needs,to do something or our generation is in deep doodoo. Of course, there's always the old Chestnut of the fact that we are women and mostly post menopausal, so most of it is probably "in our heads". I know I sound very skeptical, but years of fighting with male doctors who for the most part are fine, but doctors in general are so arrogant and it's a case of " I am the doctor, I know everything, you're the patient, you know nothing".
In my case there was always it could be this or that, so process of eliminating other stuff.
Being a mother of a registered psychologist they are quite aware it’s not in my head.
*amended typo above
I’m still perimenopausal and actually going on hrt did help the stiffness somewhat but didn’t solve muscular side of things.
I hadn’t had my FT3 looked at since 2015 when I asked for it and being low but in range fell of deaf ears with Drs… I eliminated other stuff then I did research and presented information my GP admitted it was beyond her knowledge, and referred me, lockdown may of helped her move the problem elsewhere but last 5 yrs I’ve progressively got worse 2020 was the last straw, so saw orthopaedic consultant then had ovarian cyst scare 2021 which the cyst had gone after second scan, they did find adenomyosis on both first & second scan and did wonder myself if not thyroid could be gynaecological but was told not 🤦🏻♀️
So mid/late 2021 I decided to go in armed with as much knowledge as I could retain to explore thyroid.
It worked… when got my endocrinologist appointment and he disregarded as thyroid straight off without any tests in front of him I could of screamed, was livid … instead I said well, let’s test see what’s what and we’ll go from there shall we, and see if I can get any improvement as my Tsh 🙄 has room for improvement … also asked him what he thought it was, and he said myositis or lupus was a possibility so just ticking things off, I’m not one for giving up and now just exploring options… I know it’s well written as hypothyroidism and hyperthyroidism both can have joint problems but I’m not saying it is, just needs eliminating as I have the condition.
Mri hasn’t shown and irregularities to say it’s “mechanical” but more I do the worse I am…physiotherapist just can’t get to bottom of the problem and I’ve never felt able to see anyone with fear of any manipulation as in pain with out anyone touching me!
Hope you get some answers soon too.
It honestly feels like we're running up against a brick wall, at every turn and someone else put a tip on here about taking a male person withyou to appointments, as they are less dismissive of you when you have a man with you. Honestly some of these so called specialists, are so sexist,I'd even go as far as saying they're misogynistic. To them we are just "hysterical females " It's an absolute disgrace and proof if we needed any, that it's still very much a man's world.
Just so you know up until the 1950s women were still put into asylums for what was ultimately a hormone problem, feels like not much as changed.
Yes I actually did know it’s my daughters field so heard all manner of historic horror tales in psychiatry/psychology area.
Medicine is an area where most studies were on men and it possible is still a male dominant profession overall, saying that it women dominant at my GPs surgery but that maybe few and far between.
You might find this interesting
amp.theguardian.com/lifeand...
Very interesting article and proof, I think that doctors are at the very least sexist and I'd even go as far as them being misogynistic, especially when it comes to thyroid disease as it affects 15 times more women than men, so do they classify it as "a female disease," bearing in mind that sexual organs are also part of the endocrine system. I am seriously beginning to lose all faith in the medical profession, especially male doctors, as they are so patronising and condescending.
I’ve not encountered that from any consultants or GPs but then if I did I’d give it them back, or anyone.
If my GP was like you say you’ve encountered I’d be seeing another if possible.
I’m from a longline of very strong women and my daughters got my trait too and good job she’s working in Hospitals, Prisons and lecturing at university, she needs to stand her ground, she’s mainly working with criminals!
I’ve not seen too many consultants in my life really to probably say… my orthopaedic consultant seen 4 times and same one for 2 occasions was great.
My Gastroenterologist was fab and saw him every 2wks-4wks for over 2 years, my levels were extremely high. I learnt hell of a lot from him regarding coeliac disease and lead me to look at food and nutrition, alway at hand to give me answers if required … endocrinologist has been pleasant and helpful in trying to figure things out for me. I’m still in email contact with him trying to sort things, he responds within 24hrs. I’ve started T3 Liothyronine with my Levothyroxine soon my first blood test is due… I’m in two minds about continuing it, maybe give a bit more time, if my results are ok to go ahead with it, it’s hard call to say if had much effect, think mentioned or in another post. And he actually maybe right and my muscular problems aren’t thyroid related… not saying other peoples aren’t.
We are all different.
I had only linked to few papers and want to eliminate the obvious first and actually found I don’t convert T4 to T3 very well, I haven’t yet bothered with the dna test, as on the meds anyhow it would be useful information to have, to continue treatment if I was seeing a big difference and if he didn’t want me to have it anymore I guess.
Other than upping the dose to see if it has a bigger impact on me.
I think my next appointment will be looking at dermatomyositis with a rheumatologist.
I will leave the thyroid part as inconclusive.
Hyperthyroidism carries a large risk of strokes caused by blocked arteries, and overmedication, resulting in hyper-like results, can contribute to these events. Standard procedure, whether wanted or not, to prevent further stroke episodes includes blood thinners, blood pressure regulators, PPIs and statins. There are very good reasons for the taking of all of these, proved over many years. Should any of these medications result in adverse reactions, which often happens with BP meds and statins, there are many alternatives to try. Stopping a part of the vital preventative treatment can be dangerous, to say the least, and bringing your thyroid levels within range will be helpful, too. Your FT4 is much too high; taking your meds beforehand with a gap of over 4 hours or more should not have caused such a spike, so this needs addressing. Stress will exacerbate both your symptoms and the likelihood of unwanted events, so please try to approach your current situation calmly. I can empathise as I have experience of similar situations, and know that they have to be worked through patiently and methodically. Hopefully changes in medications will provide improvement and stability.
I'm a bit uncomfortable about this post too. If i 'd just had a stroke, i would find it very stressful to have the Doctors insisting on statins, while trying to process advice from here to stop them.
( ? .... Is 'overmedication' still an issue when looking at arteries that are blocked by plaque ,which i assume means cholesterol and not blood clots ?
When i was frightened about stroke risk , (my fT4 was high) my reading on the subject led me to the conclusion that the stroke risk was due to the association of overmedication with Atrial Fibrilation, in which the abnormal heart pattern in one of the chambers, leads to increased risk of blood clots forming in that chamber then going round the body , and that it was the blood clots which posed the risk of stroke. )
@Sobs1962 , if i was in your position, i would try to accept that staying relaxed and trying to reduce stress is the best thing for you right now while you try to recover from the shock and fear of having a stroke.... and put aside your concerns about statins just for now .... Yes there are issues with them which we all know about , and i know you've looked into them a lot .. but having to fight with doctors, and dealing with the fear of what would happen if you don't take them, is not good for you at the moment either , neither is the stress of feeling that you are 'going it alone'. ... these things are bad for you too , so be kind to yourself. Sometimes when you are exhausted, it is wise to go with the flow for a while .
(like when you are getting pulled out to sea in a rip tide , swimming against it just exhausts you more , so the smart people relax and go with it till they reach calmer waters .... THEN paddle for shore )
sobs1962 even taking into account the timing of the last dose .. it seems clear from your last few tests that your fT4 IS consistently high ... and yesterdays blood test was 10 hours since last dose levo, which is definitely long enough to avoid the 'false high' issue.
So if fT4 is still high on this new test, don't completely ignore it ., even though you know your fT3 isn't over range ... Some people feel lousy with fT4 too high for them .
Surely it's worth being open minded to trying a lower dose of Levo ... have you tried it ?
With fT4 that high , you are unlikely to be getting much benefit from the 'extra' anyway , because presumably you will be turning a lot of it into Reverse T3.
You may even find that if you get fT4 lower , your conversion to of T4 to T3 actually improves a bit .
And then , if lowering fT4 doesn't lead to an improvement ,then perhaps it's time to look for someone to prescribe T3.
But at the moment, yes , your GP will definitely see over range fT4 plus low TSH as an indication to reduce dose.
It is not just the low TSH that is making them say you are 'overreplaced' , they are also looking at the fT4 results .. and while time of last dose does need to be considered , it does not make that sort of difference that would give you an fT4 of 31 [12-22] .
I wouldn't expect the spike that happens 2/3/4 ish hours after taking last dose to be anything like as big as that
eg. if your real /average level was '19' , i'd expect a test done 3/4 hrs after dose might give you '23'.... but if you are getting 31 .. then i'd expect fT4 would still be significantly over rage even after 24 hrs .
Thanks for that, I will certainly take your advice into account but I'm still worried about a dose reduction and how it might affect my recovery from my stroke as if I have no energy , I cannot be expected to do any physical exercise as it's highly unlikely I'll have the energy and physical exercise is an important part of trying to lead a much more healthy lifestyle. The doctor whom I'm likely to be discussing it with, always gives me the impression that he just isn't interested in anything I've got to say. I think all the doctors at the practice think I'm a hypochondriac, which is what they call someone with health anxiety and I most certainly do have that especially since my stroke. I'm worried that they're not taking my health concerns seriously and they're not taking my severe mental health problems into account.
i totally understand . i've had two experiences of reducing levo dose due to high T4. (from 125mcg to 112.5 , and later from 112.5 to 100mcg )
The first time it did actually help how i felt , although it was about 5or 6 weeks before it became apparent that it WAS an improvement.. the first 4/5 weeks were definitely a bit naff energy wise, but overall after about 3/4 months i realised i was much more relaxed, much less stressy and anxious, and sleeping much better than i had for years.. which was a definite plus.... and meant i was actually able to do MORE consistent regular gentle exercise without 'crashing'.
But the second time it was clearly 'a reduction too far' ,(and resulted in my digestion pretty much going to sleep) even though my ft4 remained over range. But agreeing to try this did help with dealing with the GP ....the evidence of chronic constipation on 100mcg was enough for them to reluctantly agree to increase it back to 112.5mcg despite my fT4 still being high... and it resolved my concern that i was ignoring their advice about with the high T4, which made it easier for me to stand my ground..
Once they have you in the "over anxious /hypochondriac" box .. they will always see you that way unfortunately, but you're not daft to be anxious once you've had a stroke.. i'd be terrified.
So all i would say is .. don't be scared to at least TRY a reduction for a couple of months... you are still in control , and you still have the option to put it back up yourself, or explore adding T3 ,once you've tried lower Levo for a while.
meant to add... stiff . tight ,aching muscles , particularly in my calves ,was one of the things that improved on a lower dose of 112.5mcg..... and when i've briefly tried going back to 125mcg it returned within about 2/3 weeks.
That's interesting, but I suppose I have to go through that journey myself to find out whether a levo decrease is beneficial or otherwise.
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