Galloping tendonitis - what's going on???

[Chancery]

Hi, I have a tendon problem that is so comprehensive I know something is wrong but I just don't know where to look for insight. I used this forum a while back when I had drug-induced hypothyroidism and I remembered someone here saying that Achilles tendonitis is common in thyroid deficiency so I wondered if anyone could throw some light on this problem I'm having that is getting worse, literally daily. I don't, as far as I know, have a thyroid deficiency now - it cleared up as soon as I came off the drugs.

I have had Achilles tendonitis for, I'd guess, just short of two years now. It started in my left foot, never got better, and then popped up in my right foot. It's fairly crippling but I've never seen a doctor about it because I don't think there's anything they can do for it. You've got to walk and as long as you're walking it just keeps being injured!

Recently, however, in the last couple of months, I've developed tendon pain first in my left shoulder and now my right. I can barely lift my arms. I also have it in my upper back, my lower back and my diaphragm, as in, all the tendons in these areas pull really easily (I have to be careful lying on my side, and I literally pull them just turning to pick something up. I pulled my right shoulder tendon moving a packet across my work counter!

I'm finding this really distressing because I'm guessing something's going on if tendons are just pulling in everyday use, not heavy lifting or repeated stresses.

I've tried Googling this and saw that tendonitis is associated with autoimmune disorders. Does anyone know anything about this, or have similar tendon problems? Any advice for what might be going on, or if there is something I can actually intelligently ask a doctor, would be really helpful. It's degenerating at an alarming rate, I'm only 60, so any help would be most gratefully received. Thanks!

[Marz]

Hi Chancery - sorry to read about your situation with the tendons. Not able to add much advice as I know you like the scientifically proven information. This maybe a case of having to go by the experience of others. I do think it would be worth checking out the thyroid again as muscles can be affected by low levels. As I remember you did not manage a T3 test result - or have I mis-remembered ?

I am currently struggling with Greater Trochanter Bursitis - another very painful condition involving tendons and muscles as well as the bursa. It could be the Crohns - Gluten - Dairy - not enough T3 and round and round we go. So I am tackling them all

One of the websites I visited mybursitis.com - talked about B12 injections daily for two weeks - then every other day for another two weeks. I know you are also suffering Trigeminal Neuralgia and it was often suggested you try B12 for that ( btw there is a thread tonight discussing this very topic on the PAS forum ) Currently injecting every other day.

Also VitD levels ? Tiz dark winter months up there in the north !

It's time to sleep here in Crete - so will have a look at your thread in the morning - when hopefully the brain will be working a little better.

[Chancery in reply to Marz]

Hi Marz, great to hear from you. It's not a B12 issue as I get monthly injections of that for my TN; I am B12ed up the wazoo! Likewise I take Vit D right through the winter. I'm still taking them now so that's unlikely too. I just have a feeling something might be uniting this, since it seems a weird coincidence that practically every tendon in my body is pulled! I thought it might be arthritis, but that seems to be in the bone, this definitely feels 'muscular' and it has a lot of 'wrench' factor in it. I can literally turn my head and pull major tendons in my neck that are sore for months - or worse, as it seems to be now, they're not getting better at all.

You're absolutely right that I maybe need to bite the bullet and go have my thyroid measured again, but as you know docs and thyroid figures are so s**t I feel loath to take them on! I'm dead beat with a lousy cold at the moment (my 3rd this winter; I don't know what the hell's wrong with me; my immune system seems to be shot) but tomorrow I'll try a tendonitis/thyroid and tendonitis/auto immune search on PubMed and see if that gives me any pointers.

Sorry to hear about your new (ill) health acquisition. It just doesn't stop, does it?

[Marz in reply to Chancery]

Don't think it is so new - I have just worked with it for far too long. am sure that is so familiar to many of us It seems to have flared again after yoga yesterday .....

Having your thyroid tested with your GP I think proved difficult before as he wouldn't test the FT3. Also I remember you didn't have anti-bodies - is that right ?

Currently an on-line seminar running - the Thyroid Secret - and I believe it was mentioned that a high proportion of people do suffer with Hashimotos without showing anti-bodies in the blood. So yes there could be an auto-immune issue at play here. Gut issues really do play their part in creating both good and poorly health.

Sorry I am not able to be more helpful. How much VitD are you taking ? Are you also taking VitK2 MK7 and Magnesium - both important co-factors I have read .... Maybe try B12 injections more often .... I can see your GP running for the hills

[Chancery in reply to Marz]

Yeah, Marz, he's not great on thyroid. He's not a bad doc overall but he's a demon for testing standards, i.e. whatever the NHS says is right IS right. I read on Malcom Kendrick's blog recently that the recommended 'normal' B12 levels were created in the 1940s from 7 people (yes, you read that right) who all had pernicious anaemia. How frightening is that as a gold standard? It makes you wonder how things like thyroid levels were initially assessed. and if they EVER revise them in line with research, or even anecdotal evidence from patients - God forbid.

I had zero antibodies when I was tested - literally zero. I never seem to have antibodies, but I have low IgA and I always feel that plays a part, although no doc agrees with me, plus I have chronic IBS so who knows whether they are playing a part in creating 'inflammation' problems (I'm damn sure my gut wall looks like a war zone) which is producing arthritic style pains.

How I wish I could shrink down to a molecular level and just go in there and see what the hell is going on inside. Life would be a whole lot easier! I do take magnesium (and zinc) with my Vit D, but I've never used K, no. I read about it recently and it may be one to try. I've never noticed any benefit from magnesium or zinc although everyone recommends them. I don't intend to continue them. Vit D definitely does help in the winter though; I'll stick with that one.

As for asking my doc for more B12 I can only say 'oh ha ha'. I think he'd rather kill himself. I may offer to help him.

[Marz in reply to Chancery]

You didn ' t say how much VitD you take 😊

[Chancery in reply to Marz]

Hi Marz. You know, I don't have a clue how much I take, which is probably why I forgot to tell you. It's NHS standard issue Calcichew. Vitamin D3 and calcium combo, I'm guessing. I suspect it's 500mg. I am just going to hobble over to my bookshelf and check.

Yep, it says D3 500 mg/400u tabs. I know I felt better when I started taking them, but I'm guessing my body is well-used to them (or well topped up) by now because I don't notice a difference with them any more. I usually stop taking them in summer because I get outdoors a lot and get plenty of sun, but I'm still taking them at the moment.

[Marz in reply to Chancery]

Not enough to treat a fly - if that is 400 IU's of D3. You would need at least 10 a day and then you would be overdosing on Calcium. D3 naturally improves the uptake of calcium from foods so you do not need extra. VitK2 MK7 directs calcium away from soft tissue and the arteries into bones and teeth so should be taken with VitD3. Magnesium and Zinc also are co-factors. You won't notice their effects as mentioned above - as they have very narrow ranges which are naturally balanced by the body. I take Healthy Origins VitD3 5000 IU's - with an Olive Oil gel capsule - VitD is fat soluble. Even after 4 years of living in Crete both hubby and I tested insufficient for VitD

Could it be calcium deposits in the tendons/muscles

[Chancery in reply to Marz]

I had a horrible feeling you were going to tell me that! I've resisted buying a 'posh' brand of D3 'cause I get these free from the doc, but also because I end up with lots of supplements from time to time, most of which do me zero good and are merely a combination of fashion and wishful thinking! As part of my general late-life crisis I try to ruthlessly declutter everything, including unnecessary supplement taking.

But, all that said, maybe I should give a high Vit D a try just in case, and I have worried about the additional calcium. I know it's not the best thing in the world to supplement, for several reasons, plus I'm quite a big dairy eater (cheese, yogurt, crème fraiche, sometimes Keffir) so I do worry about overloading on calcium. So yes, maybe, I need to listen to Marz for once and get myself something a bit more upmarket.

What would you recommend I should look for in terms of content/combos? Only one, mind, don't go nuts! I'm buying one supplement so make it a good one!

But the calcium deposits in the tendons?!??? Now you've got me worried. I've actually got a lump on my left one, which I've assumed is the tissue damage thing that happens to long-standing tendonitis. But hey, t's not the first time I've assumed wrong (like assuming my gallstones were an ulcer - and look how that turned out!) So I'm going to go check that out and see if it's possible. Thanks, as ever, for the tip. You're practically my go to guy for 'stuff-I've-missed'! X

[Marz in reply to Chancery]

Taking VitD will improve the uptake of the calcium you are taking in your foods. I do suggest taking the VitK2 MK7 as well - as that directs the calcium away from soft tissue and arteries and into bones and teeth. Have mentioned the D3 I take above. They are not expensive and certainly not posh

There are D3 sprays for under the tongue that also contain K2. Maybe you can find something that also contains the co-factors of magnesium and zinc. Check out Amazon - and i-herb I read the other day sometimes works out cheaper. Have not tried them. Most of us are low in Magnesium I have read - and when levels are low in the blood then the body cleverly adjusts by taking it from the bones - yikes ! Epsom Salts in the bath could give you good levels ....

So not a good reply as I do not think you will find it ALL in one pill

As you well know anything that is an * itis * - is inflammation - and VitD is a steroidal pro-hormone and anti-inflammatory. Every cell in your body has a receptor for D3 ( and T3 ) - so good levels are needed to meet the demand !

[Chancery in reply to Marz]

Thanks, Marz, I'll follow your lead and try a higher dose and the VitK2 MK7.

The calcium deposits thing proved to be very interesting as I recently (a couple of months ago) developed shoulder/arm pain which has not cleared up. While checking the calcium thing I discovered that my mystery pain fits calcium deposits in the shoulders almost to a T, so maybe I've been doing myself a disservice with these tablets. I've stopped taking them and I'll see if I get any improvement, although looking at the condition it doesn't appear to be diet/lifestyle related. That said, Western Medicine isn't too hot on making diet connections with disease so maybe I should take that with a pinch of salt.

Anyway, I'm going to look into it some more and maybe, if I feel it's a real possibility, I might take myself off to the docs and see what can be done. It says they can break the deposits up with ultrasound, but other than that it seems to be pain management, which doesn't interest me.

Oddly, I'd rather it was the calcium issue because I feel I could maybe address that, but the tendonitis seems to be so much worse. That's why I've never bothered going to the doc's with it. What could they do? Nothing. I have to walk and it hurts it when I walk. It seems pretty much incurable. It would help if I could lose a couple of stones of weight, I'm sure, but weight loss has become monumentally difficult with age. I remember the halcyon days of being able to lose weight if I just stopped eating sugar/junk. No longer. Now I eat a clean diet all I get is weight stability. Better than gaining it, but not much!

Right, moan over. Thanks for your all your help. x

[Hidden]

Achilles tendonitis is assoc with familial high cholesterol.

On PA forum I asked recently if people found plantar fasciitis improved if B12 probs put right and some said yes, they know when b12 getting low again because Pf reappears. This is anecdotal only.

Also anecdotal on internet but appears good and frequent, people finding that low vit D levels also assoc with Pf.

Those are the only faint clues I know that I can cast beneath your bloodhound nose, Chancery.

If low nutrients are associated then that might explain assoc with auto immune. Is a possible thought.

Sorry... this is a lesson in reading down before replying! Cholesterol levels then? But also, a B12 injection monthly may not be enough. You could consider adding in patches in between and monitoring carefully, and you could test your D just to rule it out.

[Chancery in reply to Hidden]

Hi Asp, great to hear from you too! I'm pretty sure it was you who mentioned high cholesterol in connection with PF to me before; a very interesting point since I've had cholesterol/gallstone issues in the past. But it's an inspired idea to supplement the B12 for a while and see if that helps. I'd never get more injections out my doc but I do have some sublingual drops I bought myself aeons ago. They've been well-kept in a cold dark cupboard so chances are they are still half fit for purpose. I might augment for a while and see if that helps. It can't hurt!

[Hillwoman]

Hi Chancery, long time no see/hear/speak. I'm sorry that you're struggling with pain again after getting the TN under control.

I can't add much more to what Marz and others have suggested, and I'd certainly try more frequent B12 injections. People clear it from the body at variable rates. It's for this reason I have to inject at least every other day (daily if I can manage it). I am also highly suspicious about your thyroid function, which can cause so much soft tissue pain.

It might be time to approach the NHS to ask for a rheumatology referral. You may not want the stock treatments they push for AI disease, but they should do some comprehensive antibody testing that might be revealing.

As for anecdotal evidence, our favourite Scottish doctor, Malcolm Kendrick, has reminded his readers that this used to known as 'case history', and was considered a valuable form of evidence if written up with care.

Take good care and I hope you feel better before too long.

[Chancery in reply to Hillwoman]

Hi Hillwoman. Great to hear from you too; I've been blessed by all the stalwarts here!

A rheumatology referral? Would that be if you are suffering from rheumatoid arthritis? Would I not have to have a diagnosis for that first before thy let me see a specialist, or do you think I could get one on the strength of every tendon in my body apparently breaking down? And they do autoimmune testing? Who knew? Knowing my luck, of course, it would all come up negative.

But you're absolutely right, if this keeps up I need to go and ask for my thyroid to be tested again - I suspect something is afoot. Literally, in my case, with my dodgy ankles.

Glad to see you're reading Malcolm Kendrick. I'm a regular. Did you see the bit he had recently about how the baselines we use for B12 levels was tested in the 40s on just 7 (sick) people? Jaw-dropping stuff.

[Hillwoman in reply to Chancery]

As I understand it, rheumatologists are the specialists most likely to test antibodies because they deal with so much autoimmune disease. Not just RA either, but also Sjogren's, lupus, and a multitude of others, though some of these conditions attract their own specialist units in lucky areas of the UK.

That said, medics vary in their quality and level of interest, as you know all too well, so a rheumy may just prod you to confirm you are in pain and pass you on to someone else. They sure as hell won't know that hypothyroidism causes widespread muscle, tendon and joint problems. And if your developing problems are in fact due to your thyroid, then you may have a small chance of locating a decent endocrinologist. Or 'opt' for self-treatment instead, like many of us here.

I did read the B12 thing on MK's blog, and was suitably boggled.

[Hillwoman in reply to Hillwoman]

Sorry Chancery, I'm being a tad pessimistic when I ought to be encouraging.

[Chancery in reply to Hillwoman]

Not at all, H, you're being a realist. I like realists!

[Marz in reply to Chancery]

Yes Martyn Hooper - Chairman of PAS - told us about the B12 ranges at the Thyroid Conference - or did I read it in his first book ? 😊Thyroid ranges not a lot better - they took a 1000 people I believe - some of whom could well have been Hypo - hence the range for TSH being too wide.

You really need to insist on the FT3 being tested. OK your TSH can be safely in range and the FT4 but if you are not converting well then your T3 will be low and the cause of most of your symptoms - in my NMO - non medical opinion 😴

Medickecks are new to TUK and have an offer - so bite the bullet and have it done privately. You have been unwell for too long.

thyroiduk.org

[Chancery in reply to Marz]

Thanks a lot for that link, Marz. I have a female doc at my surgery who is more tuned in to 'female problems' like thyroid so she may well be more amenable to having things like T3 tested. She may know more about it too; God knows she couldn't be any worse

By a weird coincidence I just got an email from the Authority Nutrition site today on 'Do you have low thyroid?' They're very reliable and completely science based so I'll have a read of that and see if they have any new insights to offer. But either way, I may need to bite the bullet and go and get what I can retested. The link you gave me will be great if they won't test things like T3 - the prices are very affordable. Thanks for all your help; you've been great, as ever. Someone should sell subscriptions to you! X

[Marz in reply to Chancery]

Even when GP's have ticked FT3 on the bloodtest form - I have read that labs can and do refuse to test if the TSH is in range.

Take a look at the posts of diogenes on this forum - he has posted today about T4/T3. He is Dr John Midgely - a research scientist involved in Thyroid testing - its unreliability and so on. His most recent research is available on his posts/threads.

You are making progress - keep it up 😎

[Chancery in reply to Marz]

That's another great piece of info, thanks. I've seen his posts in the past but didn't know who he was, although I do vaguely remember him referring to his research. It's always great to have doctors you can refer to when you see your own doc - they take them more seriously than they do you, the patient! Just going to have a look at his stuff now. Thanks again, you're a national treasure!

[Marz in reply to Chancery]

Click onto your News Feed - he has just posted a reply to someone 😊

[Chancery in reply to Marz]

News feed? Hell's bells - where do I find that?!

[Hillwoman in reply to Chancery]

Click on the down arrow next to your name at the top of the page. The news feed is at the top of the list.

[Chancery in reply to Hillwoman]

Ha! Found it - thank you, H. You've saved me from Ignorant Idiot of the Year Award. X

[Chancery in reply to Hillwoman]

Found the damn news feed but now his comment isn't there. Too slow obviously! Now I'll never know.......

[Chancery in reply to Chancery]

Me again, just letting you both know I engaged my brain, found Diogenes and have checked both his posts and his recent replies. I'm almost proud of myself (almost). Some very interesting stuff; making my way through it. Thanks again, both of you. X

[Hillwoman in reply to Chancery]

Phew, you got there in the end!

Next to the Thyroid UK logo near the top of this page, there is a horizontal list of forum areas. If you click on 'Followers', you will go to a page with a search box where you can locate forum members. If you search for Diogenes, you can bone up on his posts and replies to your heart's content.

xx

[Hillwoman in reply to Hillwoman]

Aaagh, didn't see your last comment - you've found out all this. Jolly good. Carry on...

[Chancery in reply to Hillwoman]

Spiffing, H. Off for some pop and buns now - what-ho!

[Marz]

nahypothyroidism.org/deiodi...

Thought you would like to get your teeth into the above article - with almost 250 References for you to check through

[Chancery in reply to Marz]

Oh wow, that is JUICY! I'm going to dedicate an evening to that one. Just the opening paragraph has me in research heaven! X

[Marz in reply to Chancery]

How did it go ? ....