Addisons disease

I’ve just had my urine cortisol test results back they’ve said contact my gp ASAP as it’s suggestive of Addisons.

Results 39 nmol

Range 55-138 nmol

Again I’ve had to pay to get this testing done as they’ve used lockdown as an excuse not to test me even though the private endo recommended it based on my private saliva test results previously done.

I still couldn’t get an appointment again it’s a telephone appointment which I’m waiting on now.

Gp has just called and is very amendable to referral,he said they only get a handful of patients with Addisons and although he has some experience of it he’d much rather put me under the care of an endo which is great.

This time I’m going to get him to refer me to a professor in oxford that was recommended to me, i feel now at last I’m moving forward and finally have a half decent gp and I’ve high hopes that this professor will get me well.

[Nackapan]

Hello.

I'm glad you now have 'something to work with'

Also the G.p has had a kick up....

As you had the tests done!! he/she should be jumping through hoops to get you the right specialist.

My daughters Gp was very 'on it' when a hospital doctor by chance got her the correct diagnosis at last

She also got an apology for missing b12.

He previously kept weighing her. Put her on an exercise programme that made her ill and offered antidepressants and mindfulness. She isnt like me in that respect and did as instructed at that time.

He is held in high regard among his peers. Its back to staring at Screens. Too short a time seen and the loss if clinical skills.

You type in symptoms and the computer works out the drug options.

I do respect doctors but they really need to change things within the system to get some joy back in their work.

What about your intrinsic factor and other results. ?or am I jumping the gun again lol

I know not a great result.

However it will explain so much and a label to get sine specialist medical help.

I wish you well.

.

[Hidden in reply to Nackapan]

Good morning Nackapan yes at least it’s progress and he was very pleasant on the phone,ive not met him yet but he’s the head partner and was very honest with me about his abilities so that gave me confidence in him.

The other blood tests and I.F test results should be with me in a day or two they are preparing them now so I’m hoping for some normality on them.

It’s bad that I have to pay for these but I have no options and yes it was probably a waste of time with the I.F test but I wanted to try just out of curiosity I guess.

I know my b12 results will be high as I’ve been S.I but again I want to see the levels.

All the other tests I’ve had included like thyroid ViT d and folate and ferritin magnesium potassium etc I’d also like to monitor so I know if my levels are improving with supplementing.Fingers crossed and thankyou x

[Nackapan]

I dont know what supplements you have but have a look at Lamberts multiguard ADR.

I'm sure others targeted at adrenaline support too.

T c

[Hidden in reply to Nackapan]

I will do that thank you x

[Foggyme Administrator in reply to Hidden]

Hi Thrones. Just a quick comment...not a good idea to take any additional supplements (especially any marketed as adrenal support) before you see the Endo. May skew tests he will want to run and result in a potentially inconclusive outcome 🤦‍♀️.

Good luck with the Endo..hope it leads to better health 🤞.

[Hidden in reply to Foggyme]

Hi Foggyme thank you for that,the previous endo I had gave me a long list of supplements to get but I declined because I knew it needed further investigation so after a lot of research and more tests I’ve managed to get a diagnosis and a gp on side and he’s doing the referral I’ve asked for to this professor who specialises I this in Oxford.

I’m scared but relieved to be making progress at long last.

This gp agreed 100% this could be as a result of the previous brain injury so at least I’ve got someone on side now.

Thanks so much again x

[Nackapan in reply to Hidden]

Sorry I thought tests were done

[Nackapan in reply to Nackapan]

Wonder why did the endo suggest supplements . ? They should know what would skew tests they are running surely ?

So have you got to stop everything again waiting for more tests including b12 ?

My daughter had extensive tests at addenbrookes .went in for a day. No mention of stopping vitamin supplements ??

[Hidden in reply to Nackapan]

Probably because there was a lot of money involved sadly.I knew right away then he wasn’t the endo for me and after some good advice from elsewhere I dropped him.

I’ve every confidence in this other endo so only time will tell now.

I’ve just been given a phone appointment for the 08th July which I’m pleased about so all I have to do meantme is forward all my new test results from medichecks when they come through.

[Nackapan in reply to Hidden]

Oh that's good. Not long to wait.

Thinking of you.

[Hidden in reply to Nackapan]

Thank you Nackapan stay well x

[Nackapan in reply to Hidden]

My daughter said the testing in hospital for Addisons was okay. She had to stay there for most of the day as they took blood at intervals All very thorough . I think other testing was going on too .I'm sure your telephone consult will go over it all.

[Hidden in reply to Nackapan]

Thank you Nackapan.hope you are well today x

[Nackapan in reply to Nackapan]

Adrenal

[pitney]

I am pleased to hear that you are starting to make progress and I so hope that you now continue to get good support from your GP.

All best wishes

[Hidden in reply to pitney]

Many thanks Pitney it’s so good to get reassurance from the members like yourself.god bless x

[Jengastar]

Hi, do you mind me asking what your symptoms were? And if this was linked to the B12? Because my B12 was missed for so many years I went down route of it all being linked to stress and adrenals but I could never afford tests. Glad you are getting specialist advice, I feel I am just experimenting with my own body to see what works. In a few months B12 injections have cleared about 80% of symptoms but I’m still a bit tired and wake a lot in night. Thanks!

[Hidden in reply to Jengastar]

Hi jengastar it sounds like you are on the same merry go round as me it’s so difficult to pin down any one thing isn’t it.ive had to pay private via medichecks to get multiple tests done it seems never ending.The gp tried me on melatonin for poor sleep but it never worked,I suffer bad dizziness and nausea when I wake amongst other things.ive been self injecting b12 every other day to keep the Addisons at bay on the advice of a retired gp friend until I could get some results back from 24 hour urine cortisol test and I’ve now arranged to see Hopefully the best consultant in dealing with Addisons.

[Jengastar in reply to Hidden]

Thanks, I still feel there is so much I don’t understand! I didn’t know about the urine test, it was saliva ones the nutritionists were recommending. But as I couldn’t work due to the fatigue I was struggling to afford private tests. I used to feel like I was hungover and had been run over in the mornings. But now I feel mostly better I also can’t work out if poor sleep is my cortisol high, just habit, or something else. Thanks for your info and keep us updated!

[Hidden in reply to Jengastar]

Ask your gp to do an am cortisol test then you’ll know for sure and it would save you the expense of private testing x good luck.

[Jengastar in reply to Hidden]

Yes I will do. They have just tried to give me antidepressants and told me nothing was wrong with me for 6 years, despite me being bed bound for weeks on end a few times and having to give up my career. I haven’t even told them about the B12 SI yet!

[Hidden in reply to Jengastar]

No surprise there that’s the usual go - to for them.

How long have you been S.I for? It’s a game changer isn’t it.ive no intention of telling them I S.I I told them during loading doses I couldn’t go anymore than two days between shots because my feet burning and pain and dizziness got so bad but it didn’t swerve them one bit.ive had HPylori and high MMA so I obviously can’t store b12,previous endo sad I had functional b12 deficiency but I think it’s p.a so I’m waiting on intrinsic factor results coming back,I had to stay off b12 for to do it and it was agony without the shots.

[Jengastar in reply to Hidden]

Yes the coming off the injections is what’s been stopping me contact GP and pushing for tests. I’ve been doing daily for 2 months now. I just tried out of desperation as my NHS B12 test was ‘normal’ but I had such bad fatigue, pins and needles, loss of memory, coordination and suicidal thoughts. It worked in a few days so I guess on one level I am really grateful for that outcome and wonder how much do I need to know the why. But then I also want to know if I can 100% recovered so I can get back to the level of running I used to and also some reassurance that if I understand why it happened I can make sure it doesn’t come back. Mine came on before I was vegan, and after a few years of intense stress and bereavements, so that’s why I had ended up thinking cortisol as it fitted a few of symptoms and I was constantly told me blood tests were normal. I think I will speak to the last GP I saw as she seemed the most open minded! Thanks for your help. It helps just knowing I’m not the only person navigating all this!

[Hidden in reply to Jengastar]

You should post your thyroid results here the members will give you good feedback back then you can act on it,they always say normal on gp tests I’d post and get an opinion from the people who really know x

[suztango]

Hi. I have / had low cortisol too.

First they check to see if it is Addisons eg are your adrenals working? They do this via a synacthen test. My synacthen test was fine. So my low cortisol was nothing to do with my Adrenals not working. It was actually because I had low T3. (I have an under active thyroid.) When my endocrinologist saw that my synacthen test was fine, they didn’t really connect the dots with my thyroid problem. I had to do that.

But they did put me on T3 meds (rather than levothyroxine) and I take a big dose when cortisol is being produced (3am) and it is raising my cortisol. The method is called CT3M.

[Hidden in reply to suztango]

Good morning thank you for that info.the gp used lockdown as an excuse not to proceed with the referral for that test but now I’ve pushed a bit more he’s been very good as he realises the seriousness of Addisons.I copied my 24 hour urine test results to him and he had no hesitation referring me to the endo I choose although I’m paying so he had nothing to gripe about,in fairness he did offer me a referral to nhs endo but I declined for 200 quid I’ll pay to get the best,I don’t drink or smoke and my health is my priority these days.

That’s great ct3m works for you I had some great advice from Paul robinson on that he’s such a lovely man,you can have a look on his new website just google it.x

[suztango in reply to Hidden]

Hi Yes I belong to Paul Robinson’s Facebook group and have been following his advice

be warned - private endos may be just as useless as NHS ones. At least you get to choose though. I went the private route at first as well, as my NHS endo appointment was scheduled 9 months from the referral. The private appointment was very quick and they scheduled the synacthen test the next week. He then started to prescribe me the T3 (which he had to write a private prescription and I got it from a German pharmacy). Later on the NHS endo took over the trial of T3 and I now get it on the NHS (and topped out with T3 I source myself.)

[Hidden in reply to suztango]

Hi yes I’ve already found that one out lol The one I’ve chosen comes highly recommended from members here and ve been very careful with my choice that’s why I said no thanks to gps offer.I’ve seen so many consultants this last 4 years and I finally feel I’m making progress but I’ve had to do all the hard work and make choices it’s not been easy.never mind it’s getting there and thank you again x

[Liyaelize in reply to suztango]

That method works for many but not as well for Hashimoto people.

[suztango in reply to Liyaelize]

Ah I believe Paul Robinson, who experimented on himself, has hashimotos

[Liyaelize]

I tried his T3 method for months and was disastrous for me. I have his book.