Closer to a diagnosis ? maybe....

[yorkshiregirl44]

Hi everyone,

Last week i had an appointment with an endo due to fushing and my thyroid disease, anyway after some rather odd advice about my thyroid meds he said that my esr bloods were raised and he felt that this could point to polymyalgia. He continued to say that if my RA factor was normal then my GP would be able to prescribe a high dose of steroids for 18 months dor PM and that i should see a massive change in my health within a couple of days. He also said i would not need to see a rheumy.

More bloods were taken and my esr was raised again.

During this time i also say another specialist regarding stomach problems and my crohns disease. My bloods were normal including low esr. Did he mean it was too low for a crohns flare but maybe not for some other conditions.

I have appointments with both these specialists again but not for a few weeks.

Im finding it all very confusing and in the past when iv posted on here iv recieved replies from people who could identify with my symptoms, some who had RA and some with PM.

Your thoughts please

Christine

[Hidden]

I think PMR usually sends the ESR pretty high but if I were you I'd ask exactly how high yours has been - specific numbers etc. I as for print outs of mine.

I would discuss this discrepancy with your GP who should be able to access the exact numbers. Do you use the PMR HU or Vasculitis UK HU? If not you could ask about this on there too but I wouldn't get too hung up on your ESR - it's your symptoms that count with Crohn's and PMR.

GP's are usually the ones who diagnose and treat PMR rather than rheumatologists. Steroids are the main treatment and usually work very well very quickly for it so this could be a way of confirming your diagnosis too.

[yorkshiregirl44 in reply to Hidden]

Thanks...My esr was 33 one time and 32 the next so not really that high but raised from what it normally is.

My concerns with the endo are that he gave me some really odd advice about my thyroid meds, he wanted me to come off them. I have autoimmune thyroid disease which is a life long condition and daily medication is needed.

I have symptoms of PM of some other kind of arthritis qith possible an esr that flutuates.

Thanks

Christine

[oldtimer]

How confusing for you!

I think you need to know more details about your ESR - it is only a measure of inflammation after all, so needs to be taken into consideration together with your symptoms and other signs.

[yorkshiregirl44 in reply to oldtimer]

I know that it was 32 one time and then 33. Possibly not high enough for PM....but the endo thinks it is this. The crohns specialist says my esr was low but he did not give me the numbers. Once my GP gets the results i will ask for a print out.

Thanks

Christine

[Coastwalker in reply to yorkshiregirl44]

Hi yorkshiregirl,

Just checking, but I am sure you already know that many Chrohn's sufferers are found to be deficient in vitamin D. ?

[yorkshiregirl44 in reply to Coastwalker]

Im low on vit D and have started on suppliments.....my body finds it difficult to store vit D and others which i am having tests for. Theres alot going on..each specialist doing their own thing and no-one looking at the bigger picture.

I know i am not having a crohns flare....not sure what else is going on.

Thanks Christine

[Coastwalker in reply to yorkshiregirl44]

Good to hear you are on vitamin D, yorkshire girl, hopefully you are on a good dose of D3 ? as there is a strong connection with Crohns and lack of vitamin D, many might not be aware of.

Supplementing with D3 helps Crohns.

I do hope you get to the bottom of it all.

[Hidden in reply to yorkshiregirl44]

Well a lot of specialists would consider an ESR of 30 or under pretty much normal and not an indicator of an inflammatory process . On the other hand, as you said, it may be quite high for you - each of us has different normal levels. I always thought 26 was low for me until it got down to 17 or so! On the other hand mine is often in the 50s and 60s but my rheumy never seems particularly concerned.

Shocked about this endo wanting you to come off thyroxine - what are they thinking I wonder? Did you query this there and then? Like yourself I've always been told that thyroxine is for life because it replaces the natural hormone so your body stops making it. No wonder you were confused. Have you got a good GP you can ask about this to?

[yorkshiregirl44 in reply to Hidden]

Hi,

My GP is very approachable but i often feel shes out of her depth plus shes still training to be a GP.

When the endo wanted to take me off thyroxine i said it was not a good idea as i feel awful most of the time with all common symptoms and i woud feel much worse if i stopped. That said he reduced my dose even though i have a high TSH and a low T4.

I guess something is raising my esr my task now is to find out what exactly.

Thanks Christine

[Hidden in reply to yorkshiregirl44]

Apparently a flare up of hypothyroid symptoms can cause ESR to rise as well. But an endo should surely know all this? I'd go back to GP with it because she is fresh out of med school and thyroid problems are usually a GP's domain so she should know this at least. Do you get your CRP taken because I'm reliably informed that this can represent flares of inflammatory disease more accurately?

[yorkshiregirl44 in reply to Hidden]

Yes iv read about raised esr and thyroid disease somewhere. Iv got a telephone appt with my GP on wednesday so maybe things will be a little clearer then, hopefully.

Thanks Christine