I took a short 12 week course of statins ending in April 17
I stopped because of muscle stiffness
However, despite stopping 2 years ago, the stiffness has progressed
I have had lots of tests, but no answers provided
However, the specialist did say that he was sure the statins caused the problem but something else is responsible for making it continue. But what, he could not say.
SO I wondered if my thyroid function may be responsible for the continuing stiffness?
So, here are my thyroid figures (all within range) but I would still welcome any feedback
Have you ever supplemented with Co-Q10 (also known as ubiquinone)? It's essential to the body and yet statins deplete it. You should do some research to find out the maximum dose you can take then try taking it for a month to see if it helps. It needs to be taken with your fattiest meal of the day.
There is another form of this substance called ubiquinol. (Ubiquinone is converted into ubiquinol in the body.) Sadly, both Co-Q10 and ubiquinol are expensive, but they can be bought without prescription.
There are different opinions on whether Co-Q10 is actually helpful in reversing statin-induced myopathy (muscle pain). You might want to do some research on "How to reverse statin-induced myopathy".
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Another thing that won't be helping is that you are under-medicated with a TSH of nearly 4. Most people with hypothyroidism need a TSH to be 1 or under.
FT4 14.2 (9 - 25)
free thyroxine 13.400 (12 - 22)
I'm puzzled by the above two results. Free Thyroxine and FT4 are the same thing and yet you have two different results and two different reference ranges. Are you sure they are both from the same blood test?
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A common effect of hypothyroidism is low stomach acid leading to poor digestion and low levels of vitamins and minerals. Low nutrients can contribute to muscle pain and stiffness.
Read some of SeasideSusie 's and SlowDragon 's posts on the subject of testing and supplementing nutrients.
I have just read through your post and replies of 3 months ago ... lots of suggestions. Am afraid I have nothing to add except to find a GOOD physical therapist who can perform a DEEP massage and help the muscles recover. I am currently enduring 3 two hour sessions a week here in Crete. First a massage followed by electrotherapy then Acupuncture - am beginning to notice an improvement. 😊
This clinic has a beautiful apartment where you can stay in Chania too - so maybe it is something to consider. Am also wodering if being vegan is affecting your muscles ... ? - not something I know a lot about.
Me too - could have had a chauffeur driven Rolls with all the money I have spent over the years. This protocol is massage then electro therapy then acupuncture - all in one hit 😊 It seems to be working but of course I realise it is not a cure ... I had spinal de-compression surgery in 2007 and have a spondylolithesis so a weak core and muscles that have not been served well by Hashimotos. Am not on holiday - I live here 😊 You can click onto members usernames and read their Bio - only takes a couple of minutes !
Hi, when my sister took statins they activated a gene for myasthenia gravis, might be worth checking out if the muscle pain continues and the thyroid isn’t the problem.
I was looking for answers for my progressive muscle stiffness, so came on this forum.
Yes, many have commented the same as you, that the TSH is too high.
I shall find out more
thank you
Alps Holiday
For a few years I began to have increasing joint stiffness if I sat down for a comparatively short time (even as little as half an hour), and needed to be careful not to fall over if I tried to move too fast first thing in the morning. Thankfully there was no pain as such.
After beginning levothyroxine I suddenly realised one day that the stiffness was gone!
At the time I was still taking statins, with no apparent problem. After looking at as much of the scientific evidence as I could (especially Dr Malcolm Kendrick's The Great Cholesterol Con), I gave them up. But I didn't notice any difference, so it seems the stiffness in my case was connected to thyroid levels.
Your T3 seems quite good, (I think T3 and T4 usually need to be in the top quarter of the range). but T4 is a bit low, and TSH is a bit high. I still felt rather unwell when mine was just under 3.
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Thank you jnetti for your reply.
Yes many have said the same as you, that my TSH is too high and T4 too low.
I shall find out more.
If the GP does not "help" what is then eat step pleas?
With taking statins it’s essential to also take CoQ10 with PQQ.(Amrita Nutrition).
High cholesterol may be caused by undertreated thyroid so prudent to test reverse T3 as it will indicate an underlying untreated infection as one example. The CRP is also a good marker to baseline inflammation. Then do everything to reduce what might be causing the inflammation eg diet, environmental, lifestyle factors to name a few.
For muscle stiffness I’ve found ReMag liquid and lotion to be extremely effective and you might also want to add ReMyte and ReAlign (Botanicahealth).
Carefully monitor your heart rate as an undertreated thyroid with electrolyte imbalance could manifest itself as missed beats, bradycardia, arrhythmia. The heart only has T3 receptors so it is important to ensure the T3 isn’t being blocked by reverse T3.
Talks of muscle damage and pains etc. Quote; Rhabdomyolysis (when muscle breaks down rapidly) is another rare muscular manifestation of hypothyroidism. It's often triggered by the combination of being hypothyroid and engaging in vigorous exercise or taking a statin (a cholesterol-lowering medication).
By the way, Niacin can also be used as a non-Rx way to lower cholesterol. It tends to cause flushing, so I have always used "Slo-Niacin" which, as the name implies, is released slowly. I was put on a statin once and had months of morning back pain, right across the kidneys. When I read about rhabdomyalysis, I decided to try an experiment. I stopped taking the statin drug, and a week later, my back pain had disappeared. Using the "challenge/rechallenge" method, I waited a couple of weeks and then began taking the statin drug again. Back came the back pain. Suspicion confirmed. I stopped again, and pain was gone again. Not willing to continue taking the statin. Who knows what other bad effect it might have.
So I did some research and learned about Niacin's effect on Cholesterol. I take 1 500-mg tab of Slo-Niacin daily. For a while I had to go up to two tabs per day, but once my hypothyroidism began to be treated properly, the numbers came down. My last cholesterol test was right at 200 for total, 121 for LDL ("Levels of 100 to 129 mg/dL are acceptable for people with no health issues but may be of more concern for those with heart disease or heart disease risk factors.") and 57 for HDL. Triglycerides are at 111. (All are reported in U.S. as milligrams per deciliter - mg/dL)
I had the same thing with statins. They tried me with two types and neither suited me and I felt awful so I refused to take any more. Unfortunately the pain didn't go as quickly as it came. I took cannabis oil as I was at my wits end and that definitely helped. I have just started back on it as my thyroid meds are not quite right and hope it will help me.
Sorry to hear you too are suffering the long term side effects of muscle problems even after stopping statins.
Like you, I've tried "all" the supplements commonly mentioned, including cbd oil, which did not help.
However, many replies to my post have suggested that, though within range, my TSH is too high and my T4 is too low.
I shall certainly find out more about this.
Maybe statins, even though stopped long ago, affect thyroid function?
However, many have also posted that NHS GP's will not treat unless TSH is above 10, which does not make any sense at all. After all, the patient knows exactly how they feel.
So, what is the best way to bypass this GP obstacle and obtain treatment for a high normal TSH reading?
How did the GP treat you for your symptoms please Carna?
So, what is the best way to bypass this GP obstacle and obtain treatment for a high normal TSH reading?
I wish I knew the answer to this, but I'm afraid I don't. I was first told my thyroid was "borderline underactive" in the early 90s. I got my first prescription for Levo in 2013, over 20 years later. And my TSH was just under 6 at the time, so the doctor prescribed very unwillingly. In the end I got fed up begging and started to treat myself by buying thyroid meds online. It certainly took a lot of stress out of my life. I have since found out that I have a pituitary problem - I doubt it has worked well at any point in my life and that I have probably been functioning on too few cylinders since I was born.
Some anecdotal info : I have found that eating a low carb, moderate protein, high fat diet (avoiding sugar as much as my willpower will allow) has helped with my brain fog, as has optimising my iron, ferritin, Vitamin B12, folate, and vitamin D. I use the Diet Doctor website for dietary advice and low carb/ketogenic recipes.
Yesterday I took 500 mgs l-tyrosine and 150 ug kelp
Plan to do the same today
Please don't! Kelp contains iodine. Iodine used to be used as an anti-thyroid drug for hyperthyroidism before carbimazole and PTU came on the scene. I think it just speeds up the destruction of the thyroid in people who are hypothyroid.
Before supplementing with iodine in any form you really need to test to see if you are deficient. There are various ways of testing iodine level - with or without taking a loading dose first, and using blood or urine. Don't bother with the loading dose type of testing - it gives a result suggesting that the vast majority of people (98% - 99%) are deficient, which is simply not believable.
I don't know which of blood or urine is considered to be a better substance to use to test iodine. I think it might be urine, but SeasideSusie would know.
I have read of people on this website taking tyrosine but I can't recall anyone benefiting from it - do some searches for L-Tyrosine and Tyrosine to see whether anyone benefited from it. I tried it and it just made an existing headache problem much worse.
Many have comments that TSH has to be way over the range , before GP will commit?
Why don't GP's treat by symptoms?
Thyroid problems are generally considered by doctors to be a "woman's problem". This is a pseudonym for "hysterical", "not real", "attention-seeking" etc. We have a worse than usual problem here in the UK because the NHS looks at each problem in isolation and decides at what level of severity they will deign to treat. Since the problem of thyroid disease is considered to be a female one they treat the condition at a late stage to avoid treating hysterics who don't deserve help. Is this fair? No. Is this reasonable? No. Is this sadistic? Yes.
(For any man suffering from thyroid disease they are just unlucky, but some of them get tarred with the same brush as women.)
In some countries in Europe sufferers are treated when TSH reaches 3 (allegedly).
I've read on here about buying levothyroxine and natural thyroid online?
is this effective? how can you be sure you're getting what you pay for?
There is always a risk of getting fake medicine or not getting anything at all. But the best way of avoiding this issue is to use suppliers known to be reliable and honest. All chat about suppliers has to be done via private message, it is against forum rules to name them publicly on the forum. Create a post asking for whatever it is that you want i.e. Levo, T3, NDT and ask for any replies to be sent to you via private message. Don't be too willing to assume that every reply you receive is honest.
I definitely second what humanbean has said about iodine.
I don't have any experience of a blood test but I have done the urine iodine test - twice - and can vouch for it.
This is the test I used - needs to be ordered with ThyroidUK as your "practioner" as they don't deal direct with the public. The result goes to ThyroidUK who then send it to you.
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health. Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
I did it to establish my level and I was exactly half way through the range - 150 (100-199). I was consulting with a practioner at the time who suggested a supplement which contained iodine. She had sight of my test result and I reminded her that I was not deficient. She said it was fine to take the supplement as it was "only a small amount of iodine" - 150mcg - 100% RDA. Well, I took it as I trusted her. A few months later I repeated the test as part of a thyroid/iodine urine test and it had increased to 250 (100-199). So this told me that (a) I was correct in questioning whether I should take the supplement and (b) that the test reflected that I had been supplementing with iodine. I ditched the supplement and I ditched the practioner. Iodine deficiency is rare in the UK, we can actually get quite a lot of food - milk, yogurt, cod, haddock, scampi, etc.
I have been on Levothyroxine for over twenty years. I didn't think I was too bad on it although weight gain was a problem. I was told I had high cholesterol (hence statins) and high BP. After we gave up with the statins I was told I must take BP medications although I now know it wasn't THAT high. I suggested just a diuretic as they seemed the less of the evils on offer. Oh no I was told - we have much better drugs now. Three lots later and more muscle and joint pain and one that gave me a terrible cough that I had to sleep in the spare room and was told I would have it all the time I was on that drug. Another stopped me sleeping. A side effect apparently and was offered sleeping tablets! I refused all and eventually accepted a half dose of diuretic which has helped my BP and have just put up to the whole dose and am not enjoying waking up to a dry revolting mouth! I am hoping when I sort my thyroid my BP will improve and I can reduce or come off those drugs completely.
In my quest for feeling better I wanted to try NDT and after some persuasion my GP agreed to give me a private prescription and I bought it myself. I was really good for three years and then the formulation changed and I crashed. My doctor in a bit of a panic because my TSH was very low and my T4 was too ( (which is strange) , she insisted I went back on Levo. I immediately improved and have now plateaued and am not great. My doctor won't entertain anything other than Levo as she says the quality of NDT can not be guaranteed and refuses T3 - mainly because she doesn't understand it. So with help from the great people on here I have had my own blood tests done to check thyroid and vitamin levels. The test also shows I am not converting T4 to T3 as well as I could and could benefit from some T3. I am taking my temperature and going armed with information to demand I am referred to a sympathetic endocrinologist and if there isn't one I will have to go privately. This tweaking of my meds (which she has now just reduced!) with a 'come back in 8 weeks for a blood test' means I am wasting valuable time going precisely nowhere. I am also going to ask for the variant D102 gene test and my cortisol levels checked. All of which I will have to do privately if she won't. I am nowhere near as experienced as many on here but all I can say is get informed so you can tell your GP what you want and if they won't listen find another who will - or find a private endocrinologist who will inform your GP what you need. Just looking at your results you are probably not having enough medication. Your TSH seems too high and T4 too low. These doctors must learn to listen to us as we know our bodies and how we feel better than anyone. We don't want to be hyper and over medicate because that is not nice at all.
I hope you manage to get what you need but I have certainly had to be more assertive - even writing to my GP a week before my appointment with my concerns so she can have some idea what we are going to be talking about when I see her!
Absolutely essential to test vitamin D, folate, ferritin and B12 and THYROID ANTIBODIES
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
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.
Hi, I wish I could remember for certain where, possiby Dr Shomons book on Thyroid Disorders, that I read it is suspected Manmade Thyroxine is resposible for muscle cramps and stiffness for many who take it and that many Thyroid disorder sufferers have Fibromyalgia as a result...I don't know if there is any research to prove or disporve this, but it is odd that when I take T3 regularly (and It DOES make me feel better or I wouldn;t) I get severe cramp - so severe that Quinnine is the only thing that stops it. Thankfully I don;t get it too often and i'm sure being mildly dehydrated plays it part. Dr Shomons book was very enlightening but it was written years ago, so I suspect there is more research available now. I used to stretch all my major muscle groups several times a day (I was a PT) but it made no difference, and the longer I had Thyroid problems, the worse the sitffness became until I had to give up my profession. From time to time I 'get back into' my fitness again, as I miss being fit and supple, but I end up with ageing stiffness and the dreaded cramps, so I'm resigning myself to gentle Pilates to see if my body can cope with that.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Will look into it. Laser Therapy was mentioned yesterday - would that be similar - ? Thank you for the suggestion.
NDT reduction muscle and neck stiffness back. 
Increased stiffness & muscle pain/heart rate - chronic headache/neuralgia & tinnitus with hypercusis 
Thyroid issue? Not diagnosed
Have just started Levo. How long for symptoms to improve and hopefully disappear please?
