If so, what does it consist of and how did you get it please
Does anyone actually get treatment on the NHS f... - Thyroid UK
Does anyone actually get treatment on the NHS for adrenal fatigue or adrenal insufficiency?
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10 Replies
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The only people I've come across had to wait until they were diagnosed with full blown Addison's Disease, and even then they weren't able to get the help they needed which has led on several occasions to an Addisonian crisis requiring emergency treatment. Hopefully others on here will have had better luck. Jane x x
Hi. Yes I initially was diagnosed as isolated acth defiency and started low dose hydrocortisone at my local nhs hosp after complaining of my still hypo symptons despite taking my 125mg levo. After further tests though being a insulin tolerance test and mri scan,
It was diagnosed as hypopituritism with associated acth defiency, thyroid conversion probs and abnormal growth hormone, I am currently now on 25mg hydrocortisone and mri scan show empty sella, tests are still ongoing. So yes you can but I remember my first visit to endo was very upsetting and really had to push hard for testing, in my favour though was that my father had had a piturity tumour and acromegaly, so this may have prompted the onstart for me. Good luck and keep at them
• in reply torossilin600
I read your post with my mouth open... as, like many others I have tried and failed, and know so many others who have too... then you go on to say you were diagnosed Hypopituitary. Thankfully you got a firm diagnosis (although from my previous discussions with other Hypopit patients, I suspect they won't be in a great rush to treat all the things that CAN be treated!)
Ah well, so that's still a big fat Zero getting treatment without it being full-on Addison's or Hypopit! 
My Endo was so useless that despite being ill, and despite having very low cortisol and other hormones he even failed to run the most basic tests, when others with similar or even higher readings have! I believe I may have what is referred to as Opiate Induced Endocrinopathy, it has a lot of similar hormonal deficiencies as hypopituitary, but a different cause - but getting it diagnosed and dealt with has been a brick wall. Endocrinologists have been less than useless, and seem to think under range blood tests are simply something to waffle around and totally ignore, and rock-bottom low results mean you are 100% fine!
A mixture of Testosterone replacement via a private consultant, and self treatment for the other main issues (Thyroid and Hydrocortisone) has been my option
In my, very cynical, world "treatment" and "NHS" aren't two words that readily go together. I take Nutri Adrenal Extra, prescribed by Dr P. But you have to buy them.
NAE did nothing for me. I tool it last year when i was pre adrenal exhaustion and i'm now much worse.
rossilin600• in reply to
Can you not ask for a short syn test or can you think of a reason for a past medical trauma that may start some tests, ie head trauma in past could onset a piturity issue or like in my case heamoraging after birth (sheehans) can trigger off initially thyroid and pitiurity probs, my son was born 29 years ago and I nearly list my life shortly after they diagnosed thyroid probs and been on them all these years having numerous health issues, seven years ago I told the gp I did not think my levo was converting into cells as still had full hypo issues despite taking 150 mg levo, they insisted it was depression and going through the change, also was carer to my paralysed mum and husband going through major cancer op and chemo so thought thry may be right and took anti depressants until I could hardly function and insisted on my very first referral to endo, first visit I came out in tears of despair but managed to convince him to do tests due to my father having bipolar, piturity tumour and acromegaly after lots of serious tests including 2 itt tests now show I have adrenal issues ( low cortisol) thyroid issues as now agree that with piturity disorder, empty sella showed up on mri scan) that cannot go by tsh as it will now never change must go by symptons (been telling them that for years), and also show abnormal low growth hormone (opposite level to my dad, interesting) this condition can take years to get to this state, I feel so angry and let down this has all but destroyed my family life and I have little support and understanding, been called a hypochondriac from my son and because no one has any knowledge of the seroiusness of this cond and howw awful I feel , I am on 25 mg hydrocrtisone, 150 levo and am now having to fight nice guidelines to get growth hormone injections as .3 over cut off point of 3. I sometimes feel like life just isnt worth struggling on for, (sorry very depressed at mo) and at the end of my tether like most of us struggling to get right diagnosis and for gps to listen and not fob us off. My thoughts are with all of you struggling out there.
Have to say that my endo looked shocked when I suggested my adrenal system might be challenged. Decided to go it alone with the help of people here. Have changed to T3 and am trying to minimise all additives in food and reduce number of cleaning products. I also take ginseng and have acupuncture. May sound expensive but it is not really. The ginseng costs £6,00 and lasts two months and I go to a multi-bed acupuncture session that costs £12 per session, my T3 costs about £63 (including custom charges) and lasts 3 months I also pay for a free T3 test every three months which costs £90. So for about £10 per week I am able to walk. Not a bad deal. My adrenal output is also slowly improving. The poor walking was probably something to do with poorly functioning adrenal system.
I also have 6 monthly D3 tests as well as iron profile and VB12. Have had severe D3 deficiency and blood transfusion for iron deficient anemia.
Saw endo (for possibly last time) who said I seem to have found my mojo. Interesting medical term I responded with slightly raised eyebrow. I then thanked him and said I would be looking elsewhere for medical support to maintain my mojo.
I would like to say that my method works for me. We are individuals and there are many ways to crack a nut. I do think the testing is important. What I do know is that there are many people here who have had to find out what is best the hard way. And, the advice provided is totally invaluable due to there wisdom and desire to help.
Regards and good luck
Lin
no they don't.
if you have primary - yes. if you have secondary - no! it's total rubbish!
i lave 'low-normal' cortisol levels. my range was 185 - 700 nmol. my 9am test came back at 199. i asked for a referral. in the meantime the dr who'd asked my my cortisol level to be tested told me it was too low and i needed HC. i started taking HC and after about 6 weeks i went from zombie to normal. i felt that i had my energy back and i wanted to go back to they gym again. it was fantastic. then i got my referral through and i stopped taking HC as it would alter the SST test i was going to have. back to zombie mode falling asleep all the time etc. SST test was done (baseline bloods done and thyroid bloods done but no acth baseline blood which is very important in reading secondary results).
the endo discharged me. they were happy that...
9am cortisone baseline was 195 (dropped 4 points)
30 mins was 545 (if it was 540 or lower they'd have had to either treat me or do further tests)
60 mins was 617.
it goes to show that with stimulation the acth works to activate my cortisol levels but with no stimulation my levels are far too low.
no
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