Is this level low: Hello lovely people I have been... - PMRGCAuk

PMRGCAuk

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Is this level low

Mandymoos8 profile image
9 Replies

Hello lovely people I have been feeling unwell for some time, I have Pernicious anemia / B12 deficiency which is treated with B12 injections. I believe this may be under control but had other symptoms in the past six months or so such as extremely weak arms which shake at any exertion as well as feeling tired all the time.

My cortisol level came back at 278

Which my GP is saying is completely normal and no action needed. I find the information online confusing.

Any conflicting views on this ? Any information would be greatly received thank you 😊

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Mandymoos8 profile image
Mandymoos8
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PMRpro profile image
PMRproAmbassador

nbt.nhs.uk/severn-pathology...

says quite clearly that normal is >350 nmol/l is considered normal. So I have to say - I do wonder where your GP is coming from and I would want some more explanation.

Do you also have PMR? Are you on steroids for that? That would interfere with the result.

Mandymoos8 profile image
Mandymoos8 in reply to PMRpro

Thank you for your reply 😊 no I haven’t been diagnosed with PMR just some of my symptoms they wanted to test cortisol levels. Feel like I have just been left now I don’t meet the “criteria” with the same symptoms but no clearer answers. It’s helpful that it is an NHS site as it seems no Gp wants to hear anything outside their very narrow perimeters! I shall march it to my GP when I can get an appointment! Thank you again

Mandymoos8 profile image
Mandymoos8 in reply to Mandymoos8

So not on any meds apart from B12

PMRpro profile image
PMRproAmbassador in reply to Mandymoos8

I wouldn't accept it as "normal" - but some GPs have some funny ideas. It is possible that your lab has a different "normal range" but you'd have to check that.

Mandymoos8 profile image
Mandymoos8 in reply to PMRpro

I will thank you

Whatgrange profile image
Whatgrange

Hello! This just popped into my mind when reading your post. Just an idea, but might be worth a thought. I have no medical qualifications at all!

Many years back (I’m 77 now) I was a ‘tired all the time’ patient. Eventually I was diagnosed with pernicious anaemia. So for 10 years I had my B12 injections. I was still so tired. Then a haematologist suggested to my GP ‘had he thought of coeliac disease’, I had been anaemic off and on most of my life. Had endoscopy and lo and behold - coeliac disease! My consultant did say that symptoms of pernicious anaemia and coeliac can mask each other! Stopped B12 with no problems!

As I said, just a thought!

Good luck!

Mandymoos8 profile image
Mandymoos8 in reply to Whatgrange

Hello there! I came back to read through my old posts to try and link a few things together. Your “lo and behold” moment did in fact also happen to me and I was diagnosed with celiac two years ago, so the thought that popped into your head, well it was on the right track. I still self inject and am of the understanding will have to for life. The worst bit is I can’t have a decent slice of tiger bread the best bit is I lost over a stone in weight going gluten free ye haaar! Anyway hope you are doing well and I wish you all the best ✌️

Harbel profile image
Harbel

Just to add, I am one of those with pernicious anemia, coeliac disease, and pmr. They can keep company!

Whatgrange profile image
Whatgrange in reply to Harbel

Aren’t we lucky?

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