Appointment with endocrinologist

[PMRSUE]

My GP referred me to an endocrinologist saying my cortisol levels are low. Had a telephone call with him yesterday. He said everyone taking pred has low cortisol levels and nothing to be done. However, he asked if I had some pred injections at home in case of severe sickness or an accident. I haven't and in the six years of PMR, nor my GP or Rheumatologist has ever mentioned this to me. I now have to see the endo nurse to collect the injections and for her to show me how to administer them if need be. Does anyone here have these at home and have you had cause to use them?

[SheffieldJane]

I was given an emergency pack of Hydrocortisone and syringes. Read the sick day rules to the right of your screen, helpfully put there by Mrs Nails, for reference. I have never had to use it. The hope is that Cortisol levels will improve as we lower our Pred dose. The Synacthen Test should show the potential for that recovery. He’s perfectly correct in stating that all of us on long term steroid treatment are in this situation. I remember feeling conflicted when I was under my Rheumatologist and an Endocrinologist. I had to increase my Pred dose following a subsequent diagnosis of GCA/LVV. My Adrenal function had recovered. If I am not lucky a second time, I will be on low dose Pred for life. Sometimes Hydrocortisone is preferred because it more closely mimics the action of our own Cortisol production, it’s not as effective for PMR etc. Your Endocrinologist does not sound like the best of communicators. Mine was very sweet and drew me diagrams.

[PMRpro Ambassador]

Sometimes I do wonder about how much physiology and pharmacology sticks after medical school!!

What dose of pred are you on? That is also a factor.

healthunlocked.com/pmrgcauk...

When we take above about 7.5mg pred for any length of time our adrenal glands stop producing cortisol because they sense that enough corticosteroid to function is present in the body in the form of pred, the body doesn't care if it is synthetic or natural. Too much corticosteroid is what causes the side effects we are familiar with so the body does its best to compensate by not adding more. The daily dose is plenty to function but under normal circumstances if we are subjected to severe stress - as in illness or injury or even emotional stress - the body would normally produce a spike of cortisol to mount the fight or flight response and prepare the body to deal with it. After being on pred longterm the adrenal response can be severely blunted and that can lead to an adrenal crisis in some cases when there just isn't enough cortisol to cope.

There is an emergency pack which you can keep at home, containing hydrocortisone injections in case they are required.

addisonsdisease.org.uk/the-...

SheffieldJane had one sent in the post after she was identified as having a poor response - but with no warning or explanation!! In fact, some time later and on slightly less pred her test was acceptable!

Technically, we possibly should all have a kit but I really don't know of many who do. According to a recent study, poor adrenal function in patients who have been on long term pred is more common than had been thought - and I think a synacthen test should be done on everyone once they are down to 5mg. Sometimes you really have to fight.

However - most important is that everyone should be aware of the possibilities and the signs and symptoms of an adrenal crisis and if they feel really unwell to not hesitate to call the emergency services for assistance, Paramedics always carry the needful - far more use than a GP there, It is the reason that ALL long term corticosteroid patients should carry a steroid warning card to alert healthcare stuff to possible problems - formerly a "blue card" but now rather more striking!

addisonsdisease.org.uk/news...

england.nhs.uk/2020/08/ster...

The old blue card allowed you to keep a record of changing dose but you soon ran out of space ...

[123-go in reply to PMRpro]

I have a small library of full blue cards tucked away, but I carry the current one with me along with the new steroid warning card. Belt and braces!

[PMRpro Ambassador in reply to 123-go]

I have a blue card in my purse - but no-one here would know what it meant!

[123-go in reply to PMRpro]

It really should be printed in all languages. I'm not suggesting it could be a project for you. 🤔🙂

[PMRpro Ambassador in reply to 123-go]

Nah - I only do "to English" which I'd claim to do very well. Always into your native language ...

[Koalajane in reply to PMRpro]

Hi, just wondering who should be giving us the new card? Any help gratefully received thanks

[PMRpro Ambassador in reply to Koalajane]

endocrinology.org/adrenal-c... says

NHS Steroid Emergency card"The new card can be ordered through the usual NHS ordering mechanisms:

Secondary Care: Xerox online portal

You may need to raise a Non-Catalogue Requisition in Oracle, selecting supplier as XEROX, and we can process the requisition by raising the order with NHS Forms. Cost is £3.94 excluding VAT for 100 cards. 1 unit is 100 cards.

Primary Care: PCSE online portal

Private sector: email: [e-mail] for registration form

Patients can also download a pdf version if they wish. Some patients are also uploading the pdf version as the lock screen on their mobile phones, to show health care professionals in a medical emergency."

So I assume the hospital and the GP practice must carry them, possbily the pharmacist and you can print off a copy of your own anyway. And if you have a smartphone - upload the pdf version

[Koalajane in reply to PMRpro]

Thanks I will ask my pharmacist when I am there next

[Karenjaninaz in reply to PMRpro]

I have a silicone bracelet which says: adrenal insufficiency. I got this online from Walmart. This is very comfortable and can be removed at bedtime. No searching in my confusing purse for cards. I do have it also listed in my mobile phone emergency info too.

[Hidden in reply to Karenjaninaz]

I wear the rubber band one that says taking seriods, steroid dependent. I also got one on the strap of my handbag.