Thyroid and PMR

[Lily-fly]

Asking for a bit of advice.

Have been on levothyroxine for 40yrs for under active thyroid.

Have been on preds since May 20 after being diagnosed with Pmr. Was given 15mg but now down to 7mg however my back and legs kill me as the day progresses!!

I had bloods done recently and found my TSH level for thyroid is 10.76 and apparently should be under 2

The doctor has now increased my levothyroxine from 100 to 125.

I’ve read somewhere preds reduce the levothyroxine working. Is this correct??

Doctor totally dismissed this but I’ve put on 2stone in weight and feel so lethargic??

Many thanks for any help with this

[PMRpro Ambassador]

Pred can suppress the level of TSH so it looks OK when it isn't really. But yours is way high so you obviously do need more thyroxine and it is possible you need more than he's offering you - you will have to see. Hypothyroid is also a rule out for a PMR diagnosis as it can cause similar symptoms. It may be that the autoimmune part of the PMR is causing your thyroid problems to be worse.

There isn't any listing of an interaction between corticosteroids and levothyroxine.

[Lily-fly in reply to PMRpro]

Many thanks for your reply. The doctor kept saying he had never heard of this before and dismissed it even though I knew the symptoms I’m having are different to my pmr.

The bad back and pains down the legs - is that the pmr and the weight gain is that the thyroid?? Feel so confused by it all!!

[PMRpro Ambassador in reply to Lily-fly]

Difficult to say - the weight gain could well be the thyroid but it could also be due to the pred. With pred it helps if you cut carbs, especially processed carbs and added sugar. Salt and pred can cause fluid retention too.The oain could be the PMR or an add-on to PMR called myofascial pain syndrome that causes knots of muscle fibres to form in muscles - and they can irritate nearby nerves - can often lead to sciatica, especially if the piriformis muscle is affected.

[Lily-fly in reply to PMRpro]

Thanks for your quick reply. Wont be reducing my preds for a while and will wait to see if the thyroid level reduces. Having bloods redone in 2 mths. 👍

I must say before I go - this a brilliant informative site. Thank you all.

[Megams in reply to PMRpro]

PMRpro - please tell me how one can stop those knots from forming apart from stretches and trying to reach to massage?

[PMRpro Ambassador in reply to Megams]

I don't know to be honest - my physio works directly on the knot, manual mobilisation. I suppose keeping the underlying inflammatory process in PMR under control will help. If there is an underlying mechanical problem that is putting excess stress on particular muscle groups that needs to be identified and steps taken to sort that out - all sorts of things can put stress on back muscles from legs being a different length to a scoliosis. Often there isn't a cure and then ongoing maintenance helps. I found Pilates helped a lot by strengthening the core and back muscles to support the spine so they didn't get stressed.

[Megams in reply to PMRpro]

~Thank you as always PMRpro - physio usually needles area in my upper shoulder area. I do have minor neck issues not helped by straps on CPAP mask every night - just being on computer is issue but mindful of taking breaks.

[Coffeebeans in reply to Megams]

A tip from my pilates instructor is to use a tennis ball or pilates spiky ball, place it on the knot and move around slowly whilst stood against the wall. This saves you from getting up and down on the floor.

Obviously start slowly, it will feel sore. Never do this over bone, only muscle.

You can do this regularly with or without knots to stop them forming. I do think seeing a sports therapist or massage therapist is better as they can identify and treat problem areas better but it does help me to target my problem computer posture back in-between treatments.

[Megams in reply to Coffeebeans]

~Interesting thank you Coffeebeans- I lay on my obie roller every night to obtain neutral spine (straightens me out) + put legs in air as if I'm riding a bike. Anything to keep strength in pelvic/lower back + legs.I do need to check in with physio now hols almost over ~

[PMRpro Ambassador in reply to Coffeebeans]

I have never managed to get the ball technique to work!! Maybe my tight muscles are in the wrong place - the ball always ends up on the floor!

[Coffeebeans in reply to PMRpro]

It does lead to some comedy moments - I think I look like a bear scratching it's back on a tree. 😂

[PMRpro Ambassador in reply to Coffeebeans]

My grandfather had PMR 50-odd years ago and used to get an awful itchy back - he was often to be found in that sort of position!!

[Longtimer in reply to PMRpro]

Me neither, curvature in spine doesn't help......

[Lily-fly in reply to Coffeebeans]

Thanks for your reply. Will give it a go 👍

[SandyBoots in reply to Megams]

I too have found pilates helps, but also I purchased a hypervolt massage machine similar to the one that my physical therapist uses. Kind of pricey, but really works.

[Megams in reply to SandyBoots]

~Thankyou SandyBoots - I did buy wee machine with rotating knobs (best I can describe) some years ago but it gathered dust as it required someone to apply it to the areas on my upper back - precious OH didn't have the patience ~

[Ranchero]

Do you only have the TSH level? What about T4 and T3 levels? The average GP practice never does a full thyroid assay. I would advise you ask for more info and then get your GP to discuss the findings.

[Lily-fly in reply to Ranchero]

Thank you will do.

[HappyDiamonds]

I take Levothyroxine for an underachieve thyroid and was told not to take my Adcal D3 within 4 hours of the thyroid tablets. Im no expert and not sure whether the levothyroxinestops absorption of the D3 or vice versa, but just wondered if you are taking the same and whether it would be worth checking. Im sure PMRPro will be able to answer this and advise you in her usual expert way.

[Lily-fly in reply to HappyDiamonds]

Thanks for the reply. Yes I’m on Adcal d3 too and also weekly Alendronic acid 70 mg. I recently read this too and have started taking the thyroxine in the middle of the night when I wake with a flush. I’ve had severe flushes (10-15) every night for the last 6 years and wake every 30-45 mins!!!

[Canarylady]

O you poor thing!I m having the same problem s as you at the moment so I m all ears!

Weight gain!still got round face,I ve had pmr and GCA now for a year,and I m finding it very difficult.

I haven’t seen a doctor for 8 months!due to they do everything over the phone!so I m managing on my own!??

Doctor just gives me my preds and that’s it!

I m stuck on 17mg of pred at the moment due to my work load and hrs.

I ve started to think if I m too low on my thyroxine?

I m on 75mg,I get very 😴 tired also weight gain?

I ve had a pmr flare since Christmas and have been trying to calm it down,so I take 5mg of pred before I go to bed and then the rest of the dose at 5 or 6 am,it seems to help otherwise I m in so much pain,I find it difficult to get out of bed.

I also take adcal d3,but have been told not to take it at the same time as my thyroid tablets best 4 hrs apart.

Sorry to babble on,just so nice to hear someone going through the same as me.

Take care

X

[Friedgreentomatoes in reply to Canarylady]

It's very interesting to read that levothyroxine should be taken 4 hours apart from the Adcal tabs. I will try this. Thank you to those who contributed this information.

[dmart7]

I have been on Levothyroxine (currently 175mg) for 25+ years and Pred (9.5+) for three years. I have experienced no crossover problems between the two.

[Kath567]

My TSH was over 7 when I first came down with PMR prior to prednisone despite being on levothyroxine for years. My doctor said it’s like the canary in the coal mine. He said it wasn’t at levels to cause the severe symptoms I was having and I had the dosage was adjusted which has been stable. The next PMR relapse no problem with my thyroid but it wasn’t as severe..

[Dydee]

Wow, I have been dealing with the same problem. Have been taking Levothyroxine and Liothyronine and have been on Pred. since June 2020. I finally got my numbers looking good with my TSH at 1.16. BUT, my very low back and ALL hip muscles and part way down my legs are so painful and I am still so tired. I blame the tired part on the PMR. However, I was off B vitamin supplements for several months because Biotin can skew the TSH reading and I was testing regularly for a few months trying to get my thyroid straightened out. I am back on my Bs and hoping that will help.

I hope you can find relief soon!

[PMRpro Ambassador in reply to Dydee]

Pred also skews the TSH levels - lowering it so it looks good when in fact it should be higher because thyroid function is low.

[Dydee]

Boy, it gets you coming and going. LOL So when my TSH was at point 20 it might actually have been closer to normal. LOL And here doc and I were happy with the 1.16. I really appreciate the input. It certainly adds to my understanding of what is going on with me.