I have been treated for hypothyroidism for 20 years or more , I’m currently taking 75 thyroxine ,,, for years I have had quite bad hips , neck , back pain ,,, it was very bad about 4 years ago ,, saw specialist had X-rays ,, said was bursitus ,it got better for a while have had quite severe neck pain and migraines in between ,, that is also a bit better 🤞. I’ve recently had X-rays again on my hips ,, so painful climbing stairs or walking on uneven ground ,,, X-rays say no problems with arthritus I presume . I don’t sleep well and I am very tired most of the time ,,, the pain doesn’t go away with ibrofen or paracetamol .
Does this sound like fibromyalgia .? Years ago told it wasn’t ,,,, but can’t see what t can be if not arthritus orRA ,,, not had a blood test for a while told to wait until Feb 😮,,,I understand it can go hand in hand with Thyroid disease ,,,I need to make another app to speak to Dr ,,don’t know what to ask him ! Need to know what I’m dealing with , it’s so draining !
Thanks in advance
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Val-55
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Hi val, so sorry to read about your suffering. I was in similar situation for many years, slowly getting worse and worse, until reading Dr O'Bryan's 'Autoimmune fix" which I strongly recommend. I no longer take pain killers or reflux tablets and although the arthritis has not gone away, nor will it, the pain associated with it, especially in the morning when I got up and all through the night when I tried to sleep, has almost completely gone. Why? Read yhr book - but in a nutshell years of eating Gluten were responsible. Almost everything we eat has some form of wheat in it and this causes leaky gut in many people, the body's response to that is explained in O'Bryan's well researched book. Many GP's simply hand out pills or stick to info supplied by the big Pharma companies, you HAVE to take responsibility for your own health and not rely solely on them. Try what O'Bryan recommends for 3 weeks and see how you feel, its a very small ask for such a huge payback. I'm the eternal sceptic, but I'm 100% on board with this because, for the first time in years I have lost weight, have energy and feel great. Good luck!
I’m coeliac I have been for approximately 10 yrs. My muscular/joints problems didn’t come on until year or so after hypothyroidism and coeliac diagnosis and although I have negative antibodies now for coeliac for approximately 8yrs and totally gf obviously now life long, unfortunately removing gluten hasn’t had one bit of difference to my situation with my condition… it’s amazing how different we all are.
I'm so sorry, it must be miserable - have you tried committing other foods? Dairy and sugar being two well known culprits. As I was a Personal Trainer for 25 years I also strongly recommend controlled forms of exercise, especially stretching as this loosens muscles which cause joint tension and release rubbish and toxins from tight muscles, that may help? You need to be guided though, its not a question of watching a video and having a go, a qualified fitness person needs to see you and discuss how you are feeling as you go through the various stretches because you could do more harm than good. this may be a place to start - I alike golf ball if I don;t stretch!!
I have weakness and hyper mobility in pelvis thigh hip sij area I’ve had dozens of physiotherapy sessions over years… it was my Nuffield physiotherapist who actually said after must be 40 sessions with her with couple of time outs as exercise caused problems but it was under supervision everything I did was ok, I shouldn’t easily get these pulls strains which inevitably in the end gets my sij and then can’t move… my ccg area won’t give steroid injections for SIJ, explored most things … physiotherapist thinks something else is contributing to my problems.. and mentioned thyroid only from having similar people with ongoing unexplained symptoms.
GP required me to go to NHS physiotherapist to get full record of situation before a referral and I have 2 lots of 6 sessions on nhs which never really helped either and we approached it a different way… as previous exercise wasn’t helping, but neither did hers but hurt my knees doing squats with weights, my glutes wouldn’t engage apparently 🤷🏻♀️… I finally got referred to get MRI which I had privately in the end, but nothing structurally found other than worsening degenerative disc in neck lumbar. I had 7 yrs previously a MRI for thoracic disc bulge hitting my spinal cord causing neurological problems, so this was easy to compare scans with same orthopaedic consultant, I’ve had Dexa scan and all ok. I’ve not sought osteopath or chiropractor just couldn’t face being manipulated.
I cannot seem to strengthen or repair muscles very easily after slightest pull occurs. She likened it to my muscles/ligaments (strength) need to be the pot around the jelly and take away the pot, as I have no strength it pulls me out of alignment extremely easily like jelly doesn’t have much structure… I was very flexible but after my last bad episode rendered me bed bound and limited movement for at least 6 months with extreme pain, in Summer of 2020 I went on hrt and helped, in 2021 went on T3 and helped more… I have become less flexible over the last 2yrs though.
I’ve been rigorously tested for other muscle related conditions.
I’m nursing a slight problem at moment, quite ridiculous I was counter height no bending , I just obviously put weight on my left to lean forward and as I stepped back got hip, thigh and buttocks pain instantly on that left, irritated something (probably piriformis) but luckily it’s not been chronic and can look after myself… but it’s been a week, still niggles, I try to get up every hour not sit for long periods of time quite aware sitting for lengthy periods is a worse thing to do.
Over the past years (nearly a decade) read so much re diet mainly because of coeliac disease and hormones and after slight complication starting hrt Had exploratory pelvic scan and found adenomyosis… which I’ve read can cause pressure and pain, although cyclically I’ve never really suffered with it but have cyclical hormonal cyst. I’m in the mind it’s all connected, it’s my hormones all out of whack as this started when 47, I’m 56 and still perimenopausal.
Re diet I’m in touch with couple of nutritionist and seen dietitian twice and generally my diet is good I probably eat too much though.
I don’t eat processed free from junk most I make myself I generally buy organic from Riverford I’m not vegetarian but I eat over 40 different plant based foods a week “eating a rainbow of foods” I generally mix my breakfast up eggs protein filled or with steel cut oats, seeds and nut butter & frozen berries, but I eat seasonally with my fruit and veg mainly. I don’t consume many seed oils, I use olive oil, butter and coconut oil. I have fatty fish twice a week red meat twice a week adding in liver pate for extra iron. I take D3 3000 with K2 at moment.
I’m about to buy supplements selenium, zinc and add in magnesium and considering Vitamin B supplement as my folate isn’t great I have B12 injections and in upper end in range even before my next one is due.
I’m waiting for my next baseline blood tests then introducing extra supplements as clearly not absorbing for such a good diet … However I haven’t experimented with going dairy free but certainly the lactose free Aristo & Teva don’t suit me. I have ones that included lactose.
I most likely have methylation snp in my dna …I don’t drink alcohol excessively, I don’t cook things to death and eat well so unless there’s another underlying problem I can’t fathom other than the damage from being so very out of range with my coeliac situation why my iron folate is so poor. I’m not deficient but low in range so I plan to up that area … my new endocrinologist is running adrenal & glucose tolerance test in the new year as apparently these spasms I get can be adrenal he’s looking at Addison’s but think barking up the wrong tree but going with it to rule it out … my FT3 even on Liothyronine (T3) is still low just in range… TSH almost suppressed so more experimenting to be done with him.
Re sugar obviously I do have some, hard not to if you eat fruit and veg… majority comes from whole foods naturally occurring which obviously has fibre to counteract the spike in blood sugar… I haven’t a sweet tooth really, I have 85% dark chocolate if I do have some, in form of starchy carbs I eat brown basmati rice I try to eat higher fibre pasta eg Chickpea or lentil. I rarely eat gf bread I do eat some white potatoes but have squash and sweet potato more. Cakes and biscuits aren’t something I eat much of can go months without… the sugar in my diet I’d say is probably from dry red wine at weekend few glasses over 2 days… I don’t drink in the week unless anniversary or Birthday celebration.
Other than my known conditions Coeliac disease, Hashimoto’s, Pernicious Anaemia and asthma. I do have high end creatinine levels but nothing else as they can see, I had scan of kidney, gallbladder and liver only my creatinine level that’s abnormally high so down as CKD3a. My BP is fine, my cholesterol GP stopped checking as alway on low side. Keep meaning to find the lady who wanted to know my results, but completely lost the message, if she reads this inbox me, and I’ll send them.
My blood sugar by my annual HbA1c is higher end of normal and I periodically have hypoglycaemic episodes so having glucose tolerance test to look at that as mentioned.
I was quite sporty and owned my own horse for 26yrs until she died so being active, having my daughter and now leading more sedentary life but not through choice isn’t something I expected at 56 more 86!
Once your thyroid treatment is right, consider HRT if you are of that age, because it is the only thing that has taken my arthritis pain away (oestrogen is involved with cartilage regeneration).
Did you try NDT - as I see your last post was asking about this treatment option ?
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels and physiological stress ( emotional or physical ) depression, dieting and ageing can also down regulate T4 to T3 conversion.
You are dealing with a lot of pain, whether fibromyalgia or not, it doesn't ease symptoms and understand your concern and obviously just wanting to know how to ease the pain.
I had awful bursitis pain in my legs when my T3 blood results was very low. I’d been on levothyroxine T4 for over a decade for Hashimotos but I never felt well. It just kept getting worse. In the end I could barely walk. I was 59 and had to leave my brilliant job. I decided to join this forum. I found out so much. I decided to go private. Within two consultations I was diagnosed with very poor conversion from levothyroxine T4 to the most important hormone T3. I was put on a trial of T3 liothyronine medication. Oh my goodness. A complete turn around. Suddenly I felt 10 years younger, full of energy and full of life.
I’d get your T3 bloods checked along with TSH and T4. Also check your Vit D, folate, ferritin and B12. Often thyroid conditions bring low vitamins. Vitamins need to be high in their ranges to help converting t4 to t3. Get your lipids done too
TUK offer a list of pro T3 private endocrinologists. However, if you’d like the name of a brilliant one I’m seeing please just private message me. He is in Oxford but does zoom and telephone consultations so no need to travel. He just needs recent bloods and a GP referral letter. I’ve not looked back. Three years on I feel better than I ever felt in years.
Thankyou so much for your reply ,, I would be very interested in seeing the Dr you have mentioned ,,, I live in Wiltshire , the Oxfordshire end ,, do would not be too far to go !
Gp isn’t interested ,, but they are spread so thinly ,,,
I need to get bloods done again before I go further
Bursitis is an inflammatory condition affecting tendons and muscles around joints. Which supplements are you taking ? 75mcg of T4 sounds a low dose ....
VitD ? What is your latest result ? VitD is anti-inflammatory and a steroidal pro-hormone - so much more than a vitamin.
I have Hashimotos - lumbar stenosis - bursitis on both trochanters and so on.
Are you eating dairy? I had a scare earlier this year because of joint pain. I was tested for RA and it came back negative. The joint pain coincided with me reintroducing dairy to my diet. Once I eliminated dairy again, after 2 weeks the joint pain was completely gone and hasn't returned since.
As an aside Val, I came off Thyroxine for a month as I ran out and also wanted to see what would happen - yes yes dangerous I know - I just took the T4. I felt wonderful, but my bloods showed a radical change and my Thyroid was desperate for T3 even though I felt well. I have another post asking if anyone can give an accurate prognosis for prolonged very high TSH results. I feel fine, though I know problems are not always reflected in how you feel because hypertension is not 'felt' until you are in trouble. Since I started taking Levothyroxine again I feel cold, a little more lethargic and get cramp again, all this was gone when I just took T4. As Dr O'Bryan says in his book, there is 'normal' and there is 'usual' and the two are by no means the same. Test results that are usual are not necessarily normal results for blood work, so if you Dr tells you your results are normal, get them to explain exactly what the norms are, not what he/she finds usual in people's results.
Thankyou all for your very helpful advice ,, I can always rely on this site .😊 I will firstly get more blood tests before I can move forward and will post as soon as possible .
Hi all my joint pains (Knees mostly and pelvis) came on strong wen I was undermedicated and resolved when on higher dosage. I even got plantar fasciitis and could hardly walk.
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