Hydrocortisone for adrenal insufficiency

[CornishChick]

Has anyone ever successfully obtained this from a GP or Endocrinologist in the UK without having Addisons disease please?

[MULLIONAIRE]

Good morning, yes it was a real struggle to get diagnosed with secondary adrenal insufficiency. Eventually, had the correct testing. But had to go private to get the results. Have been prescribed hydrocortisone by the NHS now for 10 years.

[MULLIONAIRE]

This article explains more about the difficulties: pituitary.org.uk/news/2017/...

From your title guess you’re in Cornwall. My health problems became severe whilst I was living in Cornwall

in the 80s, after I moved to Yorkshire in 2001 they started to be addressed. Even then it was a struggle. Hopefully, things have now improved.

[CornishChick in reply to MULLIONAIRE]

Thank you so much. It’s interesting I spoke to someone else who moved to Cornwall, deteriorated and after a couple of years had to move back to the midlands. Was absolutely fine back there, and she suspected the sea air?!

Would you be able to pm your private endo please? I know there’s something not right affecting my sleep, but still no idea how to fix it! Thank you.

[MULLIONAIRE in reply to CornishChick]

The endocrinologists who helped me were in the NHS in Yorkshire. Think the best people to go to for advice would be the nurses at the Pituitary Foundation.

I was born in Devon and moved to Cornwall when I was 14. The sea air I always find invigorating, usually helps people sleep well. Good luck, hope you find some help.

[CornishChick in reply to MULLIONAIRE]

Thank you. I have spoken with the endocrine nurse at the Pituitary Foundation. She was very nice and told me which blood tests to have, but couldn’t tell me where else to go for help, so I’ve hit a brick wall!

If only the Cornish sea air made me sleep!

[TiggerMe Ambassador in reply to CornishChick]

I was wondering the same... Has anyone ever successfully obtained this from a GP or Endocrinologist in the UK without having Addisons disease please?

Can you remember which tests you were told to have?

[CornishChick in reply to TiggerMe]

hi Eeyore100 sorry I’ve only just seen your post. This is what the nurse told me:-

Bloods test required prior to endo approval, as advised by Endocrine nurse  1 Full thyroid FT4, TSH, FT3 and antibodies 2 Full pituitary profile To include cortisol pre 9am3 Sex hormones4 Full iron panel/blood count 5 Liver & Kidney 6 Vitamins D, B12, Folate, Ferritin, B12, selenium etc 7 Blood sugars - diabetes related tests8 eGFR - kidney function9 PTH - for parathyroid (often but not always done with calcium)10 ACTH very important pre 9am 

As a result I was given HRT, despite not requesting it or having any menopause symptoms, but told it should help my cortisol/DHEA levels. I am about 2 weeks in so can let you know how it goes.

[TiggerMe Ambassador in reply to CornishChick]

Thanks CC,

I've been on HRT for a couple of years now and certainly found the estrogen takes away the anxiety and progesterone knocks me out! Then a little testosterone puts a bit of fire and joie de vivre back in the mix 😏 I didn't have any of the standard hot flush shenanigans but aching joints, twitchy bladder and loss of confidence, gaslighting nonsense... hope it helps 🙏

My DHEA is only a little under range so maybe the HRT stopped it crashing as badly as everything else?

Last week I swapped out some glandular for HC (self sourced) and seem to have a little more resilience... early days 🤞

I've got a SS test promised somewhere in the pipeline so thought I'd continue with my experimenting 🤗

[CornishChick in reply to TiggerMe]

can you remind me how you get your testosterone please? My GP has said it’s a no no, despite being very bottom of range.

I am only just below range with DHEA too, but seems the gp and endo don’t care about DHEA. Do you find the same?

I have another SS test too, although feel it’s a waste of time. I could’t get my detailedresults last time despite hours and weeks of perseverance! Was just told you passed, which is what I expected!

[TiggerMe Ambassador in reply to CornishChick]

Hmm... I'm not holding out any great hope for the SS test either but did sow the seed that perhaps an aldosterone and renin at the same time might be useful....

I first started on testosterone after visiting a menopause clinic who passed it on to the GP, they were a bit resistant to start even with the Lenzetto but did test my levels and I showed them the guidelines for the CCG area which stipulated they were able to prescribe it based on low libido 🙄 which is such a 'man thing' but hey ho they hand it over without flinching these days as things have shifted a lot in the last couple of years.... It's so ridiculous I could have a box a month with their sloppy prescribing now when a box lasts 8 months!

Why did they bother to test if they have no intention of providing??

This is what I plonked on their desk... (couldn't find the Cornish CCG one but perhaps you know where to look?)

gloshospitals.nhs.uk/media/...

My Endo poo pooed the saliva cortisol results so we didn't get as far as DHEA

[CornishChick in reply to TiggerMe]

thank you Eeyore100 that is useful. I will bear it in mind.

It is useful doing a private cortisol saliva test if you’re self treating, but like you say, none of the NHS will give it a second glance sadly. Shame really when you read about the effects of low DHEA, cancer, disease, etc, you’d think they’d be bothered.

[TiggerMe Ambassador in reply to CornishChick]

Do you have online access to your records? Do they not send the SS results through to your GP? Generally it's an attachment with a blurry photocopy... I find that they can access hospital results but it's on a different system which seems ridiculous and they are very cagey about letting on they can do this.... luckily I have a young, keen , helpful nurse at the surgery who was able to access and print off for me.... bless her she is just starting her Hypo journey and they've had her on 25mcg for 6 months 🙄

[CornishChick in reply to TiggerMe]

Oh dear, poor nurse.

I don’t have any records online, this is Cornwall where online records will probably be accessible in 20 years time!

I phoned the doctors, the hospital, endo, lab. Seriously, nobody could tell me the results.

I did feel quite peculiar during and after, so am not keen to have another SST, but knowing the exact readings would’ve been so useful. It’s so black and white - you don’t have Addisons, so they think you’re fine. I could’ve been one point off the range, who knows?!

[Tugun in reply to MULLIONAIRE]

Many Thanks for the link Mullionaire.

[CornishChick in reply to MULLIONAIRE]

Any reason your health deteriorated in Cornwall, did you put it down to anything in Cornwall, or was it coincidence?

[MULLIONAIRE in reply to CornishChick]

It’s a complicated story, my serious health problems started to impact my life in 1987. In 2007 after receiving my written and computerised notes, I discovered many of my medical notes between 1987 and 1992 were missing. However, it was obvious they had made a mistake prescribing medication for high blood pressure, by covering it up my problems got worse. I became involved with the Parliamentary and Health Service Ombudsman until 2019, all to no avail. I discovered that it’s common for the NHS to “lose” papers when mistakes have been made, it’s not just Cornwall.

[Hidden]

yes I have. But after they gave me too little i started to self source. I was nervous to be on HC without supervision, so I found a private GP, shared my failed synacthen results with him and he oversees me/will prescribe anywhere up to 30mg if I need it. I can PM you his name x

[CornishChick in reply to Hidden]

Hi sorry I’ve only just seen this. Yes please if you don’t mind PM ing his name.

What levels were your cortisol bloods please?