Synacthen test results

[Nikki69]

Could anyone help me with these results please, I would be very grateful. 

09:25.   Pre-synacthen.   221 nmol/L

Post 30 mins.      446 nmol/L

Thank you in advance 

Nikki

[Babygodmother]

Hi my results were pre 307, post (30 mins) 435.

What is your local protocol? According to NICE guidelines, adrenal insufficiency is when you fail to reach 500-550. European guidelines also state this, as do most local UK protocols.  Also, early morning cortisol is peak time, so you are low for this time of day.

Are you having any specific symptoms? The reason I ask is that I (like many on here) have been completely dismissed by doctors and they think it's all in my head. I must point put that I am a senior nurse with 20 years experience and have researched this inside and out.  They dismissed my SST result as "borderline" despite the endocrinologist saying "it must reach at least 480 and go up by at least 200" - his exact words. I don't think he can count. 

I have had the most dreadful experience and have now no faith in the NHS - sorry for the rant!

The pituitary gland has a lot to answer for! Has any doctor commented on your result?

 

[Nikki69 in reply to Babygodmother]

Hi babygodmother, thank you so much for coming back to me, I finally  managed to speak to my endo this afternoon, he's has told me that he needs to speak to his bio chemist tomorrow as they have recently changed the markers but he thinks that I'm boarder line addisons, the markers previously being 550 nmol/L, Croydon have for some reason lowered them. I will hopefully know more by tomorrow night. I have terrible symptoms my skin has pigmentation, I'm so tired, terrible joint pain, I'm sick 4 or more times per week and I get cold after cold although I rarely venture out as always feel to ill. I have to say I totally understand where your coming from as to the nhs and end is when I saw him back in January he was very dismissive of me and also wrote to my GP that he didn't think it was an endocrine problem, he didn't apologise to me but did humble himself.   How have you been left? And do you have a thyroid problem as well?

[Babygodmother in reply to Nikki69]

Hi, the protocols are always being lowered as no one wants to diagnose adrenal problems! The trouble is, we are so-called "borderline" cases, within he "normal" range but our symptoms are completely dismissed/discounted and "all in your head". You have classic adrenal symptoms & possible Addison's disease.  Hyper pigmentation, joint pains and vomiting are just some of the symptoms listed at the Addison's website - addisons.org.uk. Apparently, a third of patients are told that it is "all psychological".  I was in hospital in October for three weeks and thought I was on my way out, I was so ill - but my discharge letter only listed a few symptoms and said I had no pigmentation (which I did!) and that test showed "no convincing evidence of Addison's disease". Argh!

I have never been officially diagnosed although I was started in hydrocortisone (synthetic steroid) - why would I be put on this if I hadn't a problem? I have seen three different endos who were (frankly) useless and have not a single companionate bone in their body between them.  

I initially thought I had a thyroid problem, it is borderline (would be treated if in the States). I have B12 deficiency - all these issues are autoimmune diseases and thyroid problems (especially) are common in people with adrenal issues.

One if the endos wants me completely off the steroids to redo the SST. I am not happy about this. I have now ventured outside the NHS and started to look at nutrition & will be starting a mineral supplement - all going towards boosting my immune system. I have seen a specialist today (travelled all the way to Jersey to see her, but she operates in London, too) who knows about hormones, she is also unimpressed by NHS testing and the lack of skill and how these tests are inaccurate/open to interpretation (or misinterpretation) especially in cases like ours. I will let you know how I get on in the next couple of weeks with her, send me a private message then as I may forget! Let me know how you get on with the endo, and what the lab say, my experience has been horrendous.

BG

[Nikki69 in reply to Babygodmother]

Good luck babygodmother, i really hope you get some answers. Please let me know how you get on and keep in touch. Your borderline thyroid might actually stabilise once your adrenals are correctly treated. 

Nikki xx

[Jbsa70]

Hi Nikky and Babygodmother,have you heard more from your endocrinologists? I have diagnosis of Addisons Disease since 2015 and Hashimoto Disease since 1983. I am now well and have excellent Endocrinologist,but it was long and difficult journey,both towards diagnosis and getting right treatment. I nearly died as I was misdiagnosed for a while.

I am from South Yorkshire and helping organize our local group for people witj Addisons.

Best wishes

Jana