I am not sure this is even linked to my thyroid, but am going to ask your opinions.
I had total thyroidectomy in Oct 24 (due to nodules not cancer)
And have up until now been on 100mg thyroxine a day.
Over the last few weeks l have had such sore knees!!! really stiff, slight clicking, and so heavy. struggling to walk sometimes. Now have no idea whether this is linked to thyroid or whether its just unrelated and coincidental. I am quite overweight so am sure that is not helping either.
Anyone else have anything similar ??
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So we can offer better advice, can you tell us more about your thyroid condition, eg any ongoing symptoms (other than knee issue), plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
In the first instance, do ask your GP for the above tests. We don’t recommend supplementing key vitamins without testing first (and sharing results with us).
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Without seeing your blood test results, it’s difficult to say if your thyroid medication isn’t optimal for you and could potentially be causing/ adding to your joint pain. It may be worth seeing a GP/ Physio to check your knees, as strengthening exercises etc may aid recovery.
And were iron/ferritin, folate, B12 and vitamin D levels tested
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
For those with " sore knees" I have identical issue and mine is related to the BAROMETRIC PRESSURE for the day and even 48 hours out. If it goes below 30.0 I really feel it. When it starts to fall LOOK OUT!!🙃
Just to add that a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg :
Once Primary hypothyroid we all are started on T4 - Levothyroxine at a guess estimate of what we may need - give or take 25 mcg T4 adjustments up and down as time goes by and depending on symptoms being tolerated -
T4 is a pro-hormone and needs to be converted in the body into T3 the active hormone that runs the body - much like fuel runs a car with the thyroid being the gear box and synchronising all the necessary body parts to work together from your physical ability and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
In order for T4 to be well utilised and converted into T3 - the active hormone in your body we do need to maintain optimal levels of the core strength vitamins and minerals - so I'd suggest that you get run your ferritin, folate, B12 and vitamin D ad we can advise where best these need to sit in the ranges - to optimise your health, well being and conversion of T4 into T3.
Without a thyroid your HPT axis on which the TSH relies on as working - is now don regulated as your Hypothalamus - Pituitary - Thyroid feedback loop is now open ended as there is no thyroid in situ to complete this internal feedback loop making the TSH a very unreliable measure of anything and why you must be dosed and monitored on your Free T3 and Free T4 readings and ranges.
Before being discharged from hospital were you initially managed by an endocrinologist and did you find a dose of T4 that suited you - if so - do you have there the T3 and T4 readings as this is where your doctor in primary care needs to try and maintain your thyroid hormones.
We generally feel best when the T4 is up in the top quadrant of its range at around 75/80% through its range with the T3 tucked in behind at around 70 %through its range.
When primary hypothyroid we are all started on T4 monotherapy - and should your symptoms of hypothyroidisn not resolve you will need to be referred back to endocrinology for any other thyroid hormone treatment option of which there are mainly 3 options -
Synthetic T4 - synthetic T3/T4 combo or T3 alone or Natural Desiccated Thyroid - NDT - which is the original treatment for hypothyroidism and derived from pig thyroids, dried and ground down into a powder and then made up into tablets or capsules as needed - and which are medically graded and contain all the same known hormones as that of the human thyroid gland and now the most expensive treatment option for which you'll likely now need to go privately to have prescribed.
Tendonopathies are common with thyroid issues - especially when combined with auto-immune conditions.
I am awaiting a knee MRI as the x-ray was not conclusive. IT band inflamed with Greater Trochanter Bursitis from time to time. Both affect the knee area. A Physio assessment would be invaluable - along with sppropriate exercises.
There is a saying, Hickam's Dictum: Patients can have as many diseases as they damn well please. I would second the possibility of osteoarthritis, but also don't dismiss the possibility of other autoimmune diseases because people can often collect up more than one of them.
I could have written this, really struggling at the moment and interested in the post by AKatieD. I’m older (66) and never have I ever been advised or offered any support re hormone levels. I have history of blood clots so no HRT but trying to resolve my knee issues read about low oestrogen but it’s another thing to try and understand and Improve.
Osteoarthritis can also be connected with inflammatory chemical release from over-enthusiastic mast cells. This can be part of autoimmunity but may improve with B12 injections (the nerve and mast cell are very closely connected - loss of myelin on nerve will make mast cell inappropriately over-reactive). Ginger, magnesium, quercetin etc can help stabilise mast cells alongside.
Sorry to hear that. I don't, but I do get pain in all cartilage from mast cell chemical tryptase as well as considerable histamine issues, chemical reactivity etc. Pressure changes and windy weather make this worse for me, but triggers vary. This is a mouse study but will give you the idea med.stanford.edu/news/all-n...
Hormones affect mast cells too, although generally higher oestrogen is more the problem, so perhaps as often the issue is actually low progesterone resulting in unopposed or oestrogen dominance. You need progesterone for healthy cartilage volume.
You need to get you knees x-rayed as at your age it could be osteo arthritis. Did you have any problems with your parathyroid post surgery, as they regulate the calcium in your body - essential for good bone health?
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