Hi all nice to read the comments and seeing all the helpful advise.
I need some advice I have been taking 75mcg thyroxine and 15 mcg Liothyronine, I am struggling with terrible knee pains, I have had ongoing physio doing the recommended strengthening exercises, I have also seen Chiropractor a few times nothing seems to work.
I cant help but think the pain is linked to my thyroid medication my knee's were fine before starting my meds, all my test results are in normal range, I have tried different brands medication nothing seems to help, any suggestions would be gladly appreciated as this has been ongoing for several years.
Thanks for taking the time to read my post.
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itsmeyes3
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I cant help but think the pain is linked to my thyroid medication my knee's were fine before starting my meds
How long have you been on thyroid meds and when did the pain start?
I have tried different brands medication nothing seems to help
Which brands have you tried?
all my test results are in normal range
Just being within the normal range doesn't mean that they are at optimal levels for you. Can you post your results along with their reference ranges please.
this has been ongoing for several years
Could it possibly be arthritis?
Have you had key nutrients tested? Low Vit D can cause muscle and joint aches and pains. If not tested then it would be a good idea to check:
Hi Susie thank you so much for replying , I have been on medication for ten years, the brand am currently taking for thyroxine (Mercury pharma) I was also taking morningside Liothyronine and thought I would try a different brand Sigma pharm capsule which have made my knee pain a lot worst.
Last test results were TSH0.57mlU/L & T413.7 pmlol/L, also very very mild form of arthritis which my GP advise would not be the cause of the knee pain vit D was a bit low but now fine.
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We need reference ranges for your results please, ranges differ from lab to lab so to interpret results we need the ranges that come with them. Plus when taking T3 you need to have FT3 tested along with the others.
I have mild osteoarthritis and it's amazing how much pain it can cause at times but be unnoticable at others. I can't see how your GP can say that.
How low was Vit D and what is it now? Did you supplement and are you continuing to supplement to maintain your new level?
Hi there TSH level 0.57mlU/L normal range 0.27 -4.2 Serum free T4 LEVEL 13.7 pmol/L normal range 11.2 -20.2, when I request T3 level they refuse to check majority of the time as they say it's a very expensive test to carry out, they are only interested in the T4 levels, the last Vit D check the doctor said it was fine, it took a very long time to get refer to an Endocrinologist as I became very unwell and even then they were reluctant to prescribe Liothyronine which is very expensive, the Liothyronine made a difference.
Hi SeasideSusie I have a phone apt with my GP next week and will request my Vit D and B12 checked as well as my T3, based on my results above whats a good range to be within. apologies for all the questions.Thanks in advance.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health mentioning a study which recommends at least 125nmol/L. Your GP will be satisfied with 50nmol/L.
For B12, according to to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
If your result comes with a unit of measurement of pmol/L instead of pg/ml (or ng/L which is the same as pg/ml) then the equivalent levels would be
"We believe that the 'normal' serum B12 threshold needs to be raised from 147pmol/L to at least 332pmol/L because deficiencies begin to appear in the cerebrospinal fluid below 405".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 738pmol/L."
Your GP will be satisfied even if your level is one point over the bottom of the range.
If B12 is being tested then Folate should also be tested, they work together.
As for your thyroid hormone levels, it's impossible for anyone to say where they should be for anyone else, it's all very individual and especially so when on combination thyroid hormone replacement. When taking Levo plus T3 some people are fine with a low FT4 as long as FT3 is in the upper part of it's range, some people need both FT4 and FT3 over half way through range, it's a case of experimenting, tweaking each individual hormone to find the balance that's right for you and where you feel well.
Hi SeasideSusie I did request a T3 test as I could not understand why they only wanted to test my T4 levels, I also request my VitD test, my results are back as T3 level is 8.6 pmol/L (normal range 3.2 - 6.8) serum TSH level:0.27 -4.2) .Vit B test B12 249 ng/l normal range 180-770.Any help you can provide would be helpful .
my results are back as T3 level is 8.6 pmol/L (normal range 3.2 - 6.8) serum TSH level:0.27 -4.2)
TSH level 0.57mlU/L normal range 0.27 -4.2 Serum free T4 LEVEL 13.7 pmol/L normal range 11.2 -20.2,
So is this right and were all the thyroid tests done from the same blood draw or was the FT3 tested at a different time
TSH: 0.57 (0.27-4.2)
FT4: 13.7 (11.2-20.2)
FT3: 8.6 (3.2-6.8)
When did you take your last dose of T3 before the test? The day before the test T3 should be split into 2 or 3 doses and the last dose should be taken 8-12 hours before the test. Any longer you get a false low FT3 result, too close to the test and you get a false high FT3 result.
I'm just wondering why your FT3 is so high.
B12: 249 ng/l normal range 180-770
This is low. As mentioned before according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Do you have any signs of B12 deficiency – check here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.
Folate should be tested as well because B12 and folate work together.
I also request my VitD test
Did you get this result? Can you post it along with the unit of measurement.
Thanks for your swift response my T4 was done in May and my T3 was done this week, I did take my Liothyronine the full dose three hours before the test, I wasn't even aware it should be spread out over a 8 to 12 hours therefore I probably did get a false reading. my vitb folate 3.0 ug/l (normal range 4 26). ferritin 123 ug/l (normal range 30 - 300) T3 and vit B done at the same time.
TSH, FT4 and FT3 need to all be tested at the same time to get a full picture of thyroid status, nothing is static so your other levels could be different one or the other tests are done at a different time.
I wasn't even aware it should be spread out over a 8 to 12 hours
SlowDragon explained to you in her reply above a month ago how to do the test:
Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Day before test split your T3 into 3 x 5mcg and take last 5mcg approx 8-12 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests
I did take my Liothyronine the full dose three hours before the test ...... therefore I probably did get a false reading
T3 peaks in the blood 2-4 hours after ingestion so yes your result is showing a fase high. If you allow for this, because it is quite a way over range then I expect your normal level, tested at the right time, is going to be very close to the top of the range, maybe even a bit over.
◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.
◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.
You need to speak to your GP who may prescribe folic acid.
As previously asked, do you have any signs of B12 deficiency, because if you do have you must not start folic acid before further testing of B12.
Ferritin seems to be OK providing that there is no inflammation, ferritin can be raised due to inflammation. An inflammation marker test such as CRP would show inflammation.
Thanks very much I do get brain fog , I usually take all my Thyroxine just before I go to sleep then take my Liothyronine as soon as I wake up in the morning, I don't usual spread the dosage out through the day as I forget or miss a dosage taking it all in one go in the morning is much easier to manage I will take the approach of spreading out the dosage when I go back for another test😊 vit d serum total 25- 50 OH vit d level 58 nmol/L normal range 50-200 vit d interpretation <25 nmol/L deficiency >50nmol/L sufficient > 250nmol/L possible vitamin D toxicity.
Once again thank you very much for your help very much appreciated.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).
So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 3,700iu per day.
Retest after 3 months.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Vitabay and Vegavero are either tablets or capsules.
Vitabay does do an oil based liquid.
Vitamaze is an oil based liquid.
With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.
They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form
Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Thanks, I just had a text from GP to say results are satisfactory but folate level is low, a prescription is done but I haven't been told what its for just to collect from pharmacy, I will find out more tomorrow, I can't understand why satisfactory but a prescription is ordered am totally confused.
However this makes me think if all this is contributing to my ongoing knee pains.
It could be that the prescription is for folic acid. If it is it will be a course for 2 or 3 months I think but look back at what I said before. Do you have signs or symptoms of B12 deficiency, it's important. If you do you must not start the folic acid before investigation into B12 deficiency and B12 injections or supplements have started, all explained above.
Your Vit D level could be connected with your knee pain, low Vit D causes muscle and joint aches and pains so do something about that, I've explained above what you need.
Hi there the doctor have prescribe folic acid 5mcg daily for 4 months and to repeat blood test at 4 months, am not sure why prescribe if my B12 is low 249 ng/L when the normal range 180 -770) any additional information you can provide would be helpful as am not sure if this was prescribed due to my folate level lower than the range at 3.0 ug/L normal range 4 - 26. .
the doctor have prescribe folic acid 5mcg daily for 4 months and to repeat blood test at 4 months,
Which is what he should do with your folate level at 3ug/L. Please make sure you are retested, once your level has improved the prescription for folic acid will probably stop and then you will need to continue with your own supplement to maintain a good level (a good B Complex will do this, we can advise at the time).
am not sure why prescribe if my B12 is low 249 ng/L when the normal range 180 -770) any additional information you can provide would be helpful
I explained above and suggested that you check to see if you had any signs/symptoms of B12 deficiency and gave you the links to do this. Did you check? Do you have any signs/symptoms of B12 deficiency? If so then I said you need to discuss them with your GP. With B12 deficiency it's the symptoms not the numbers that matter (although not all doctors understand this), so it's imperative that you check and if you do have symptoms then do not start the folic acid until further testing of B12 and injections or supplements started, this was all explained above.
I fear I don’t have any thyroid advice for painful knees, but just to say on another HU forum we sourced some workouts for sensitive, arthritic or painful knees. I also have painful knees at times but have never linked it to thyroid directly. (Rather weight related, which in my case is thyroid related. )
You physio will be best to identify a good match of exercises to your needs, but in case you want to try some additional ones, here is the post: healthunlocked.com/strength...
Really hope you find a solution for your knees, I know how debilitating painful knees can be.
When I was getting trouble with my joints I got myself tested for food intolerances as I knew that my daughter had intolerances. My main problems were for wheat and oats. After 2 or 3 months without wheat and oats my joints were much improved and it's stayed that way.
We are often advised on here to try going gluten free. Some of us have a problem with gluten and for some of us it's not the gluten but we still do better without gluten containing foods. Have you tried going gluten free? Allow 2 or 3 months to clear your system.
The extra benefit for me was that after a couple of months I realised that I hadn't had indigestion for ages. Bonus! That explains why I was so unwell as a teenager - school food had rather a lot of wheat and oats.
Only 5% of Hashimoto’s patients are diagnosed as coeliac…..but at least a further 80% find gluten free diet is helpful or essential
(or possibly just wheat free diet)
If want to eat oats ….they need to be purchased from the gluten free section of supermarket (grown on field that never grew wheat, barley or rye….and milled in gluten free mill)
Perhaps you could have an ultrasound scan or possibly an MRI. An x-ray will only show osteoarthritis and so will a CT scan. It may be rheumatoid arthritis and an ultrasound or an MRI will show any inflammation or synovial activity. It is feasible that you could have rheumatoid arthritis as it is also classed as an autoimmune disease. It is suspicious that it is in both knees at the same time.
Where about in the knee is the pain? Is it within the knee itself? In the kneecap? In the tendons above the knee? Does the kneee give way - which could be caused by a variety of things but still suspicious that it is both knees.
I have quite bad pain above the knee in the tendons and have been getting it every year in the hay fever season. I have yet to have a scan but I do have rheumatoid arthritis. I had x-rays in 2019 which showed nothing.
Hello itsmeyes3. I've had awfully painful knees since my early 40's, not long before my hypothyroidism was diagnosed (won't go into that long story...). I have had one knee operated on, which did nothing for the pain. They said I had some arthritis in my knees. The orthopaedic doctors I saw were useless and didn't listen to what I was telling them. I would cry coming down stairs, it was so bad. I insisted on seeing a physio, who immediately found that I had hypermobility and I tried all the exercises, which basically made the pain worse. Then the physio (a knee specialist) offered to do acupuncture on my knees. It worked brilliantly, and I continued going to the physio for acupuncture every 18months-2years for a long time (even though by then the physio had set up her own private practice) until the last time (3 years ago) when it didn't work as well. At the same time I was having gut issues and eventually gave up gluten (after reading on here that it might be helpful). A year later now, and my gut issues are better, but not cured by any means. However, going gluten free seems to have helped my knees. Might be worth trying acupuncture and/or a gluten free diet. Good luck!
I had an accident a year ago when I smashed the inside of my knee on a hard piece of furniture. I have had pain in it ever since actually, a few months ago it was X-rayed but although the bone wasn’t broken it did show up a bit of arthritis.
The doctor, who has arthritis in his own knee told me that riding a bike helped to put fluid back into the joint. I can’t ride my bike now, (last time was before the epidemic) because my wrists always felt weak holding onto the handlebars so I never felt very safe. Consequently I am trying to get into the habit of using my exercise bike again which to tell the truth I am very lazy about.
I have had knee pain and it was caused by an arthritic hip. I have had one hip replacement and the knee pain went. I now have knee problems again and am about to have the other hip x-rayed as the doctor thinks that is causing my knee pain again. My arthritis was much worse when I was undereducated. Being on a completely gluten free diet definitely helped me with arthritic hands and other achy joints.
I found quite the opposite one my thyroid meds T4 & T3 were at correct levels I found much less knee pain especially using the stairs . You need to give it time to settle.
A few years ago I had such horrible back pain that I couldn’t stand for more than 10 minutes without my back going into muscle spasms. I took pain meds everyday, had nerves ablated, cortisone shots, spent solid days with ice on my back but nothing fixed it. I have Hashimoto’s and at that point in my life was told by my endo that I was fine, thyroid needed nothing. Then my hair started falling out and that was the final straw for me. I paid out of pocket to see a thyroid specialist who said my thyroid was not fine, put me on T3 and NDT and oddly right after that my back pain went away. I am a nurse so you’d think I might have figured it out sooner but back pain isn’t really a thyroid symptom, joint pain is a Hashimoto’s symptom though and I was so angry when I put that all together. I had wasted 4 years barely able to move. It’s possible that you’re not optimally medicated, for me that was the issue and I had no idea until I was. My hair grew back thicker and longer than ever (before suffering more hair loss after anesthesia - we can’t win them all!)
I also have Hashimoto's with back pain and swollen knees. I eventually got a prescription for LDN which calmed down the knee inflammation and water build up in my lower legs. Still struggling with the back though.
I’d say snap…decades of problems on and off with 1 or both knees, and numerous X-rays that suggested only wear and tear appropriate to age. Though had physio, acupuncture and regular private chiropractor for spine/hips. Did get generally better when T3 introduced as stiffness went, and did 10,000 steps daily. Then last Jan. fell headlong and ruptured meniscus in right knee and was expecting emergency keyhole surgery..last week had first ankle to hip X-rays and was told I had a disaligned right knock knee since youth, and no wonder it had hurt, should have been operated on years ago! But no op offered for anything, despite very flexed leg, given a brace. Just another example as far as I’m concerned that patients need to diagnose, never mind treat, themselves whether hypothyroid or now musculoskeletal! I did try gluten free for about 3 months 10 years ago and didn’t notice any improvement.
Painful knees are horrid to deal with so disabling. I know your GP said your vit D level is "fine" -this means nothing the nhs level recommended is much lower than grassroots or vit D Council recommend. The NHS treat to avoid rickets nothing more! Even though my vit d level is 120 I still need calcium despite my diet has plenty of calcium in it. Am not sure why the extra calcium helps but it does work and my knees are better for it. I use a topical ibruphren gel to rub in on bad days as I do have an arthritic knee....inevitable as it has an old injury....lol. I'd also ensure b12 level is high in range as this helps with best use of your thyroid meds. Your ft4 is on the low side but know ure topping up with T3 so that might not be the prob.
Doctors are not good on optimal treatment of thyroid meds & pretty useless on vits & minerals. Ask for a complete print out of your tests and post on here. Some cracking people on here.....seaside susie is brill on vits/minerals
Lastly have you had a dexa bone scan? This measure the density of your hip bones which tells them overall how your bones are faring. You can get this test on the nhs through your GP. Worth a check.
I've been reading reading the postings with interest because I too have a knee problem that's arrived in the past month. I'm going to follow the vitamin and testing advice, plus start taking a collagen tablet. I have also recently changed the inserts for my shows, this is to help correct the effects of scoliosis. I can walk and climb stairs without difficulty, but going down stairs hurts.
Hi thanks for taking the time to read and respond, fingers crossed collagen works and you feel better soon. just curious are you taking thyroid meds, it would be interesting to know the brand you are taking.
Thanks, good luck to you too! I'm hoping the collagen improves flexibility and reduces the stiffness in my lower back and hips. I take a tablet of 25 mcg of Levothyroxine (brand HENNING) and 5 drops (each drop 5 mcg) of a liquid levothyroxine (brand SERB). My dosages have needed to be decreased then increased quite often (Hashimotos) and the liquid drops make it easier to do so, instead of being either over-dosed or trying to cut up the pills. Interestingly, this combo has a good effect and immediately drops the TSH, compared to pills only. I'm guessing the drops are absorbed better.
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