Hypothyroid or PMR

[S-lly]

Hi, I was diagnosed with PMR via a phone call with dr. Have also been told I’m hypothyroid by a hormone specialist dr. and have started Levothyroxine, she thinks my symptoms of painful arms and frozen shoulder could be linked to thyroid so I’m hesitant to start 15mg prednisone. I don’t know if I can take a small 5mg dose of pred to take the edge off the pain until Levo has kicked in or wait and see, am worried that if I leave it the PMR will get worse, grateful for any advice as I can’t see my dr until next week, and I can’t sleep from the arm pains, thank you

[PMRpro Ambassador]

Taking "a small dose" is unlikely to work - you need enough to manage the inflammation and 5mg is probably far too low at the start. I really am taken aback that anyone thinks they can diagnose PMR over the phone!! On the other hand, I don't think symptoms related to hypothyroidism would respond to pred - it isn't inflammatory.

You can take 15mg pred for a week and then stop if it hasn't had any effect.

[S-lly in reply to PMRpro]

Thank you for your reply, the phone call was 5 mins long (short!) including checking all personal details etc, and diagnosed because of a history of RA, but no symptoms for about 10 years and not medicating any more. I'm hesitant to start pred if the arm pain and frozen shoulder could be something else but dr. wouldnt entertain the thought and wont refer me to a shoulder specialist. I dont know if pred will interfere with Levothyroxine? And now the gp has said I need to make my own way if I'm not going to accept their diagnosis, I just want to rule anything else that it could be out first, like an impingement or an injury of some sort or a frozen shoulder?

[PMRpro Ambassador in reply to S-lly]

Don't think she can refuse to manage you and I'm not sure what she thinks you can do to "make your own way" except go privately but if you had a history of RA that went into remission - what on earth makes her think, without a physical exam at the very least, that this is PMR and not a return of the RA with a polymyalgic onset? It does happen. It sounds very much as if she ISN'T confident of her diagnosis but is either too arrogant or lacks confidence when asked to discuss/justify it.

In terms of the levothyroxine, 30mg pred will lower TSH considerably - I don't know how much effect 15mg would have but presumably some. That might mean that the monitoring of TSH as an indicator of thyroid disease control wouldn't be accurate - symptoms become more important in that case.

There are people with hypothyroidism problems as well as PMR on the forum - maybe a new post might attract their attention for them to tell their story?

How bad are the shoulder pain and symptoms? The ED/A&E or a minor injuries unit might be the place to try if it is really bad. Some MIUs are closed with others operating on telephone triage - google your local ones. And beyond that - a single private consultation may be needed if that is financially viable. Many doctors will add patients to their NHS list if they deem it appropriate. Where are you? County is enough ..

[S-lly in reply to PMRpro]

The arm pain is a constant cramp feeling down arm, with aching muscles and pins and needles in my hand, made worse on movement. My shoulder itself doesnt hurt but is locked so my arms cant move beyond a few inches in any direction. The cramps are beginning to appear now in my other bicep. Is this what PMR feels like?

I am in West Sussex and have made an appointment to see a private shoulder specialist in two weeks time so I hope he may give me a proper explanation.

I think then its probably best not to take the pred yet until the Levothyroxine has started to work if it may interfere with it, the reason I went to a private gp was for the shoulder issue, she just diagnosed underactive thyroid from blood results and says it should help all symptoms (she specialises in hormones).

Thank you for your advice, my gut feeling all along is that it may not be PMR, is there any other way to tell other than taking steroids to see if it disappears?

[PMRpro Ambassador in reply to S-lly]

Pred will work for a variety of things that can cause similar polymyalgic symptoms so it really isn't a test for PMR yes/PMR no. That PMR is unique in responding to a 15-20mg dose is now being warned against in the literature. Some people can have a diagnosis of PMR even though it took more to achieve the result looked for - but nothing else could be identified.

It isn't a typical description of PMR - but it could be. I never had that degree of limitation of arm movement - but I couldn't raise them above shoulder level and that is frequently quoted. And if I did have that degree of limitation - I'd be making an attempt to go to A&E. At least for an x-ray.

[S-lly in reply to PMRpro]

Thank you so much for your advice, It’s much appreciated

[PMRpro Ambassador in reply to S-lly]

Just saying what I'd do - and I really would if my GP was as unhelpful as that.

[Daffodilia in reply to S-lly]

I don’t think frozen shoulder is hard to diagnose (I am just recovering from one) - May be try private physio (I lost faith in nhs ones over PMR) - I have used exercise some paracetamol and time to get mine better

[Dydee in reply to S-lly]

Hi. I started reading your comment and it sounded like I was the one who wrote it. LOL I too am hypothyroid and my original diagnosis based on hours of research, was Hoshimotos. It can present with muscle pain and edema. My worst pain was shoulders and upper arms. (By the way, my doctors didn't seem interested in going outside the box diagnosing me) My endo said there were no antibodies in my blood so not Hoshimotos. BUT it can take up to 10 years for antibodies to show up in blood work. I am on Levothyroxine and Liothyronine for the Hypo and still trying to balance out my TSH, T4 and T3 so not there yet. I also found ALL of my symptoms in the description of PMR. My GP agreed and prescribed Prednisone which does get me to a livable pain level and apparently does not interact with the Levo.

My problem with all this is low thyroid AND Pred. can cause weight gain. I'm up 12 lbs and feeling like a blob. Normally not much overweight.

[S-lly in reply to Dydee]

Wow, it does sound the same. My arms are hurting so much today I’ve buckled and taken pred ☹️ Not looking forward to the weight gain for sure, but I am looking forward to no pain. What a double edged sword 😳

I had no idea it takes so long to figure out the hypothyroid issue, it’s all so new to me, but to have the arm pain gone after 6 months will be a relief.

Good luck 😊

[Dydee in reply to S-lly]

I have done a lot of reading about thyroid function. There are so many aspects to the production and conversion of T4 into T3 and a glitch can happen anywhere along the way. Look up how thyroid works. It helps a lot to understand that it isn't always as simple as taking Levo and you are OK.

[diana1998 in reply to PMRpro]

A friend was diagnosed with pmr recently over the phone albeit after blood test. Dr started her on 10mg. She was in agony, took 3 hours to get out of bed and had to sleep downstairs in a chair. I rang her and told her to ask Dr for 15mg immediately. Within hours she was fine until Dr said to reduce to 10mg overnight. Back to square one. She is now on 12.5mg and doing OK. I've told her don't be bullied into fast drops. Poor lady lives alone with 3 dogs and daughter in Hong Kong so little support. She copes by shopping on line and is very upbeat. I am her WhatsApp buddy advisor!! The ignorance of Drs never cease to amaze me.

[PMRpro Ambassador in reply to diana1998]

I don't think anything surprises me any more!!!!

[Hidden]

Hi, I have been hyper and hypo over the last 20 or so years and stable now on 150mcg thyroxine. I did have a thyroidectomy around 25 years ago (I am 49 now), however it doesn’t resolve things completely and requires monitoring of doseage. I must say that even when I was at worst with thyroid issues, I never experienced symptoms similar to PMR. Having been on pred for 9 days, it’s too early to see if it will affect thyroxine, however the GP hasn’t flagged it as a concern. As PMRpro has said, symptoms of thyroid disorder are not inflammatory and would not respond to pred...I too have a very stubborn frozen shoulder along with other symptoms and am very pleased with improvements so far on pred. Sorry, not a lot of help I know, all you can do is treat the symptoms and trust that your GP is doing the right thing....all the very best and hope you find some relief from your symptoms 🙂

[S-lly in reply to Hidden]

Thank you

[Casia]

I have hypothyroidism and PMR but although both are auto immune conditions I haven’t ever been advised that frozen shoulder is related to thyroid. That said I did have frozen shoulder a few years prior to PMR and it’s possible thyroid patients are more prone. My PMR symptoms were pain and stiffness around my thighs and one of my shoulders and very high CRP. I assume you’ve had or are having blood tests? I do take my levothyroxine pre breakfast and prednisolone with food at breakfast at least an hour afterwards as I’m convinced they affect each other. Having been on thyroxine for 35 years my dose has been altered since taking prednisolone.

[S-lly in reply to Casia]

Thank you, this is all so helpful, no I have not been told to have a blood test and I don’t know what CRP is. My diagnosis was based solely on history of RA and didn’t involve any tests, exams, only a 5 min phone call. This is why I’m hesitant to start steroids because I’m not sure that it is PMR. My thighs are fine , just one arm to start with, felt like I’d lifted too many weights. The shoulder stiffness has set in gradually over last 10 weeks or so. I think I’m going to have to face the gp again and ask for more test. Thank you so much for your advice.

[Casia in reply to S-lly]

Mmm. If it’s only one shoulder and no bilateral pain it may well not be PMR. The CRP test is a marker for inflammation levels in your body. It’s not always a full proof way of diagnosis as there are PMR patients who don’t have raised levels but it’s normally used as part of the PMR diagnostic toolkit. ESR is often used too. Ask your GP/consultant about it.

[S-lly in reply to Casia]

Thank you, I will

[Dambusters]

My problems are the opposite of yours.

I do have PMR but now have to have tests for hypothyroid.

Both my daughters are hypothyroid and it runs in families.

Although some of the symptoms are the same/similar you can have both and they are not related.

[Evercurious]

I’ve had a hypo thyroid for 38 years, shoulder/arm pain certainly wasn’t a symptom for me.

When PMR started over two years ago I went to a physio therapist who thought I had a frozen shoulder. Eventually my other shoulder became involved, then both hips. The stiffness that accompanied both made it impossible to raise my arms.

Thanks to this forum I was able to convince my doc to run blood tests and give me a trial of prednisone. Instant relief!

[MariGrace]

I have both PMR and Hashimoto's ..an autoimmune disease of the thyroid. I take 50mg of synthroid daily and get blood tests every 6 months. I have other immune disorders, too.

They are treated separately.

It took 3 months to diagnose the Hashimoto's. Once on the meds, I saw improvement within a month.

(Had to have specific fasting bloodwork 3 months in a row.)

You might ask your dr. My thyroid actually becomes painful due to inflammation. The symptoms are the same as low thyroid..weight gain, hair loss, depression, dry skin, etc....

Hope this helps.

MariGrace

PMR 3.5 years...15mg pred a day plus imuran 100mg a day. 72 years old.

[S-lly in reply to MariGrace]

Thank you, everyone on here is so helpful. I’m glad I found you all.

Maybe it is both things at once, I’ve only been on 75mg Levothyroxine for a week so I don’t suppose I’ll notice any difference for a while, I’m 50 years old but feel about 120 :/

How long does it take to kick in?

I’m putting all my hope on the shoulder specialist in 2 weeks 🤞🤞

[Hidden in reply to S-lly]

Bless you S-lly, yes it is a double whammy!! 75mcg Levothyroxine is a fair starting dose, your GP will need to monitor your blood levels though at regular intervals, and may need a bit of tweaking to get a happy balance between hyper and hypo. With the PMR, I do empathise with “feel like 120”! I am 49 and soon to be 50 (it’s imminent!) and less than two weeks ago I was so frightened and thought I had some sort of severe early onset of premature ageing!!! Thought I would have to give up work and invest in a stairlift and a mobility scooter!!!! However, 10 days down the road of 15mg pred and I honestly feel so much better! It’s such a relief!!! Get your PMR pain under control and everything will fall into place with your thyroid no doubt 🙂

[S-lly in reply to Hidden]

I do hope so!, Ive taken 10mg today to see if thats enough, then I'll try 15mg in a couple of days if it doesn't work. I am so looking forward to being more 'alive'

[nuigini]

No thyroid issues, but in the initial stages of developing PMR had bi-lateral shoulder pain, couldn't lift my arms above my waist. An ER doc diagnosed torn rotator cuffs, even though I had done nothing to cause such an extreme condition. Prescription pain medication, muscle relaxants and NSAIDs did nothing to help. After total body meltdown a few weeks later and PMR diagnosis, prednisone took that pain and all other pain away in a matter of hours.

[Kath567]

My thyroid levels were way out when I came down with PMR. My doctor said it wasn’t enough to cause symptoms but my Levothyroxine had to be adjusted the first time since diagnosed as hypothyroid. It can be like a canary in the coal mine, a signal something is not right in your body.

[gaqke10]

I have been hypothyroid for 46 years, ever since I had radioactive iodine for Graves' Disease hyperthyroidism, Now I have antibodies for Hashimoto's too. I take 75 mcg Unithroid a day.

Never did I have such pain from my thyroid problems as I had with PMR. I agree with PMRpro that you can take 15 mg pred for a few days and if it works you will know fairly

quickly. I took 10 mg at first and my pain was gone in 20 minutes! If it doesn't work, no harm done. I never had raised ESR or CRP.

[S-lly in reply to gaqke10]

Ive taken 10mg pred this morning to see if it helps, the advice on here is so helpful

[gaqke10]

right about that. I would have been lost without this forum.