Addisons ?

[Eagerbeavers]

So iv been to see an endocrinologist today after months of thinking I'd adrenal issues or addisons . She is referring me for the synathgen test but she doesn't think iv got it! Has anyone else had this ? Have all the symptoms apart from weight loss and dark skin. Cortisol was 265 . Has anyone got a similar story ? Feel like I'll be back at square one and the fatigue has taken over my life !

[purple64]

Hi I am waiting for a short synacthen test. My cortisol levels are borderline at 345 cut off point is 350 but I also use inhalers. I am dizzy, exhausted, spaced out, struggling to get out of bed. I don't have the dark skin patches or weight loss. But I am on Carbimazole for Graves' disease which is overactive thyroid. Have been told I could have to wait for 3months for the test as the day ward is under staffed.

[Eagerbeavers in reply to purple64]

I'm exactly the same, time will tell I suppose. Thanks

[AndiRiley]

Unless you are actually almost dead, the NHS synacthen test will show that you are in perfect health. If you are able to carry out a 24 hour salivary cortisol test, you will get a clearer, more nuanced idea of what is happening, but don't expect any NHS endo to look at the results - mine averted his eyes as though I were showing him obscene images. I went through the whole process twice, was told I was "fine" despite being utterly NOT fine - and ended up self medicating with hydrocortisone and eventually prednisolone. The first Saturday morning when I took 5mg HC, I became "alive" within 20 minutes, like a previously wilting and newly watered pot plant. It lasted a few hours and then I went into my illness again - back in bed by mid afternoon. Clearly it had worked, so I slowly worked out a dosing schedule and regained my life. I was able to totally wean off steroids about three years ago and I am pretty much fine now. Steroid use is a hard route with some negative consequences and to be avoided if possible, but in my case it was absolutely necessary and with an eventual diagnosis of hypothyroidism and hard fought for T3 prescription ( after again self medicating to demonstrate the need ) my life is back on a pretty "normal" track.

In my humble view, the best way to see if you have an illness is to try the cure and if you are cured - you had the illness. With 5mg Hydrocortisone I was instantly "well" again. 10:00am Saturday morning - tired, slurring my words, shakey, weak, hopeless, painful joints, stiff muscles, on my way back to bed- 10:30am Saturday morning - WOW - what just happened - lively, chatting, whole body sighing in relief ,bed a forgotten plan.

Just my experience - good luck. Be brave, learn, experiment, don't trust the "experts".

[Eagerbeavers in reply to AndiRiley]

Thank you starting to feel like they think I'm making it up!

[Flossles]

Hi Eagerbeaver, I know what it's like so can really sympathise. I haven't had it done yet but I'm going through the same process now, I saw an endo for the first time last month and she ordered cortisol, T3 and TSH bloods and the cortisol came back at 145 but that wasn't 9am it was about 10:30 - she said in the letter "a little low" haha. Anyway, I also have a short synanthen test on Friday morning, not sure what to expect because since that blood test I paid for a saliva cortisol test from Blue Horizons and all levels came back in range except for my morning cortisol which was about 37 and the range is 6-25 so God knows what's going on with my adrenals!! The fatigue is the absolute worst of all the symptoms, literally ruining my quality of life and as such I can't work and barely leave my flat because I'm so exhausted and it's like my brain is shutting down and can't take much information in. I hope you get to the bottom of your fatigue too. I can let you know how the test goes when I have it if that would be of any help to you. How are your vitamin levels? x

[Eagerbeavers]

Yes please that would be helpful. This has gone on for so long now, and fatigue has taken me over !

[Bramble83]

Was the 265 cortisol taken at 8-9am?

[Eagerbeavers]

Yes it was

[Bramble83]

In which case it’s perfectly possible. My 8am was 210 and I have Addison’s and failed the synacthen test. I also didn’t have the weighloss or pigmentation; this was due to being diagnosed quite early on in the disease.

Other than fatigue, what are you main symptoms?

When is your test?

[Eagerbeavers in reply to Bramble83]

Thanks for the response . Still awaiting a date for the synthagen test . Was promised it would be before Christmas but really isn’t going to happen now. Do you know what the cortisol clinical level has to be to be considered low ?

[Bramble83 in reply to Eagerbeavers]

500 is what you would expect at 8-9am.

Anything below 385 at this time warrants referral to an endo if symptomatic according the official guidelines.

Anything below 100 is instant diagnosis.

There are a lot of guidelines / clinical papers that say anything below 285 makes diagnosis likely.

This is a useful article ncbi.nlm.nih.gov/books/NBK2...

[Eagerbeavers in reply to Bramble83]

Thank you really appreciate the info as getting mixed messages from different doctors . Can I ask , you say they caught you quite early did were you poorly for a while before this was picked up ?

[Bramble83 in reply to Eagerbeavers]

I’ve actually been very lucky- my main symptom was hypoglycaemia (which turned out to be due to low cortisol) and that was what got me diagnosed.

For about 4 months i’d been having unexplained hypos and was losing consciousness at work, whilst driving, whilst exercising etc. It didn’t matter what I ate, or how often, my sugars kept crashing to the point of slipping in and out of consciousness until someone gave me a massive dose of sugar (minimum of two bottles of coke or equivalent)

I have actually realised since diagnosis and started hydrocortisone how tired I actually was, but I guess as it came on gradually and I’m a super active person, I hadn’t properly noticed.

I also hadn’t really noticed (I do a lot of exercise which helps) but when I was diagnosed they realised my BP was / is quite low and is generally about 90/60, so if I get up too quick etc I can get quite dizzy but i’d been like that for ages and had never thought anything of it.

[Eagerbeavers in reply to Bramble83]

Oh god how frightening! At leat they have you sorted now. Thanks for the advice

[Eagerbeavers]

Pain in the back of my legs and abdomen . Brain fog forgetting basics . Lower blood pressure, dizzy , joint pain and craving salt general feel weak

[Fatwuzzy]

I'm in the same boat, saw an endo in January, just waiting for the appointment for the synathgen test to come through, my cortisol was 91 one day then a few days later 281 (Dr had put me on steroids for a chest infection so the 91 doesn't count) when I saw the endo he said that he doesn't think I have it, but is putting me in for the tests to be sure, I've been off work since January, fatigued, foggy head, wobbly, no concentration, no sex drive, night sweats (it's like addisons symptoms bingo with me, got the full house!

So totally empathise with you, life is hell