SST reaults

[Dylan4ever]

I have been feeling terrible. Fatigue, nausea, pigmentation developed on arms and in my mouth and body hair has now disappeared. SST results show basal Cortisol 178, 30 min 370 and 60min 498 dr says all is fine. But why do I fee So bad? I go dizzy when I stand up And my blood pressure dips. Any advice please

[caledoniancat]

Have you been getting treated for anything recently that needed steroids and/or started on levothyroxine? Was the SST carried out by NHS? If so your Dr should be in touch. I'm no expert so can't honestly interpret the test but you have described symptoms of untreated Addison's disease (autoimmune adrenal disease) that should best be discussed asap with a GP / endocrinologist.

[Dylan4ever in reply to caledoniancat]

I’m not taking anything and haven’t had any steroids. I had to go to A&E as I thought I was having a heart attack. Heart racing, pain in my back, cold and shaking. They did an ECG and sent me home.

[TiggerMe Ambassador]

Welcome aboard

It certainly looks like adrenal insufficiency which the NHS don't acknowledge, enough to make you feel awful but not as life threatening... for them you either have Addison's or you don't but many of us have tired adrenals as they have been working hard to make up for the lack of thyroid hormones for many years

I had the same symptoms and set about supplementing with adrenal cortex, have you tried an adrenal cocktail which is Vit C, potassium and salt... adrenals need salt and Vit C

[Dylan4ever in reply to TiggerMe]

I had no idea there was such a thing as an adrenal Cocktail. I am a little nervous about having more potassium as I had one high reading of 5.7 but dr dismissed it and said they can be unreliable. Any suggestions on how much vitamin c and slat etc and how frequently

[TiggerMe Ambassador in reply to Dylan4ever]

Ah, that's interesting have you some thyroid results?

Adding salt and potassium is about keeping the electrolyte balance but if you aren't balanced already taking Vit C and salt will help to re-balance... give it a try when you feel dizzy and see if it helps, personally I take 1000mg Ester-C and add salt to my food daily

thyroiduk.org/related-condi...

therootcauseprotocol.com/fa...

[Dylan4ever in reply to TiggerMe]

Thank you so much. I am going to give it a go. Off to get vit C

[TiggerMe Ambassador in reply to Dylan4ever]

You mention an Endo so what are your current bloods showing and what thyroid treatment are you on?

[Dylan4ever in reply to TiggerMe]

I’m not yet on any thyroid treatment. They are still doing tests. Based on symptoms and low cortisol I had an SST and ACTH. The dr didn’t have ACTH results back but said adrenal Function fine as cortisol went from 178 to 380 to 498 in SST he said it should be over 500 but as close enough and as they went up he is pay they are working fine. I just want to know what is wrong with me. I have had to stop all Exercise, take time off work etc

[TiggerMe Ambassador in reply to Dylan4ever]

Yes, your adrenals are able to react to a massive dose of ACTH which just shows they are capable but your starting cortisol level is horribly low hence the adrenal insufficiency tag

What thyroid results do you have which go the Endo referral?

[TiggerMe Ambassador in reply to TiggerMe]

Have they tested your kidneys, calcium and parathyroid levels?

[Dylan4ever in reply to TiggerMe]

Kidneys my GP said showed some decline but not cause for concern eGFRcreat was 62 ml/min. I am not sure about others results. Dr suggested thyroid as possible issue but I don’t know results. There are so many blood tests. Thank you for replying. I just feel very dismissed and in the dark on it all

[TiggerMe Ambassador in reply to Dylan4ever]

Probably the only thyroid test they will have run will be TSH

Interesting how they interpret the kidney results as above 90ml/min is considered normal, you can see why we are more interested in optimising whereas medics only react when there is a crisis 😕

Your eGFR results is given as a stage from 1 of 5:

stage 1 (G1) – a normal eGFR above 90ml/min, but other tests have detected signs of kidney damage

stage 2 (G2) – a slightly reduced eGFR of 60 to 89ml/min, with other signs of kidney damage

stage 3a (G3a) – an eGFR of 45 to 59ml/min

stage 3b (G3b) – an eGFR of 30 to 44ml/min

stage 4 (G4) – an eGFR of 15 to 29ml/min

stage 5 (G5) – an eGFR below 15ml/min, meaning the kidneys have lost almost all of their function

[caledoniancat in reply to Dylan4ever]

Untreated Addison's disease typically results in high potassium levels in the blood due to the lack of aldosterone. Also, low sodium thus making you crave salty foods.

[SarahJane1471]

tumbler of fresh orange juice/ quarter teaspoon of rock salt/ quarter teaspoon of cream of tartar. Stir well and enjoy ☺️

[Dylan4ever in reply to SarahJane1471]

Thank you. I think. That sounds terrible. I have just got off the phone to the endocrinologist who says he is confident adrenals aren’t the issue. He said see a gastroenterologist. I could cry

[SarahJane1471 in reply to Dylan4ever]

It’s ok. Really.

[caledoniancat in reply to Dylan4ever]

Did the endo say why he recommends a gastroenterologist? Many endos have greater expertise with diabetes and less experience with adrenals, so if he's suggesting a gastroenterologist I hope there is a sound reason. " I thought I was having a heart attack. Heart racing, pain in my back, cold and shaking" this can also indicate adrenal issues but other common symptoms include exhaustion, loss of appetite, weight loss, aching joints and muscles and when really unwell: vomiting. Addison's Disease organisation is a good source of info but may also be able to suggest alternative diagnoses with similar symptoms.addisonsdisease.org.uk/

l hope you have success in identifying the real issue soon.

[Dylan4ever in reply to caledoniancat]

Thank you so much. As I have constant nausea he suggested gastro as possible track but my other symptoms are low blood pressure and dizziness, exhaustion, pain in boy, pigmentation on arms and in mouth and now loss of body hair. I have had what I call two “attacks” both after exercise when I thought I was having a heart attack. I get what feels like burning pain in my kidney area. I just feel constantly I’ll but endings saying it’s not adrenal my basal cortisol has declined ove t the past 4 months from 290 to 222 to 178 and when I went to hospital it was 135 endo days it can just be naturally low I do t know what to think or what else it might be but I wi try the addisons link thank you

Con

[caledoniancat in reply to Dylan4ever]

That Addison's group has a lot of free resources but they also have an excellent forum, To access the forum you do have to pay membership but it could be worth it for crucial helpful advice . With your catalogue of symptoms, I doubt that your cortisol is "naturally low".

[Dylan4ever]

thank you so much. Seriously just having people engage and feeling supported has meant a lot.

[Headinjuryhypo1]

I do think the cortisol angle hasn't been explored as much as it should have been. Did you ever get the ACTH results? The fact that your cortisol went up during the synacthen test only shows that your adrenals can respond when they are stimulated. If they aren't being stimulated (i.e. by ACTH sent by the pituitary gland) then they won't produce the cortisol you need. Incidentally the synacthen test is a rubbish test. There's a paper by Dorin (details below) which demonstrates how unreliable it is for diagnosing secondary hypoadrenalism, ie hypoadrenalism caused by your pituitary. So I should push for getting that ACTH reading, and also push for the glucagon stimulation test or insulin stress test - both rather nasty tests but much more reliable. Very best good luck wishes.

Dorin RI, Diagnosis of Adrenal Insufficiency, 2003, Annals of Internal Medicine, pubmed.ncbi.nlm.nih.gov/128... For this review the MEDLINE database was searched from 1966 to 2002 for all English-language papers related to the diagnosis of adrenal insufficiency, and it was found that for diagnosing secondary adrenal insufficiency, the sensitivity of the short synacthen test was 57-61% i.e. it missed 2 people in every five.