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Autoimmune disease

Anybody else with Addison's?

8 replies

cobaltblue27 · 07/05/2017 22:19

Hi everyone,

Great to see this category here! I was diagnosed with Addison's and Hashi's in Feb and March 2016. The Addison's has scared me more, in part through a pretty traumatic route to diagnosis and also because it's so rare. Grateful to hear from anybody else with Addison's and share experience. Best wishes to all the autoimmune sufferers out there!

OP posts:
Surfingwhippet · 08/05/2017 16:07

I have had Addison's for 17 years. I'm sure you have loads of questions so ask away

cobaltblue27 · 11/05/2017 00:32

Ah wow! Great to find someone else! How have you found steroid replacement and what doses are you on? I have so far jD enough adrenal reserve to survive without daily replacement, but I wear the bracelet, have the emergency injection and have to take hydrocortisone if I get ill. I have a history of severe eating disorders and am really frightened about weight gain with steroids. Did you struggle to find a good endocrinologist? I went through three before I settled with one. Please share any thoughts and experience!

OP posts:
Surfingwhippet · 13/05/2017 22:32

I had no adrenal function when I was diagnosed so I was quite straightforward in that they saw me for a year or two to get my dose right and then left me alone.

Since then I have played with timings and dosage myself and at the moment I take a 10/10/5 split although I reduce during the summer usually to 10/10/2.5 as I usually feel better with the warmer brighter weather.

Are you taking fludrocortisone yet?

You shouldn't gain weight when you do start taking a replacement dose as it's usually only a high dose that will cause you to gain weight.

How were you diagnosed, as it's more common to be diagnosed when there is no adrenal function at all?

frazzledsouthlondon · 30/05/2017 21:28

I was diagnosed 18 years ago and like Surfingwhippet it has been fairly straightforward. I see the endo every year and he checks bloods and in the early years I had several Day Curve Tests to get steroid dose right.

I take hydrocortisone 10/5/5 and fludrocortisone 100/100- which has been increased in the last few years as renin count was low. In v hot weather (30 degrees+) I sometimes take extra fludro.

I am v careful with sickness bugs and have anti emetics as an emergency in case I'm sick to help keep my steroids down. I was very sick during my pregnancy but managed to use the anti emetics sensibly and was ok.

General advice- keep as well as you can, drink lots to avoid dehydration and accept that sometimes you need salt! I can really crave crisps some days. Have annual flu jab too.

Happy to answer any other queries x

ElphabaTheGreen · 08/06/2017 21:18

This thread is heading towards zombie land but I've only just noticed the new(ish) autoimmune topic.

I'm coming up to a year since my Addison's diagnosis - I went to a neurologist for chronic daily headaches and he discovered my adrenal function was virtually zero (morning cortisol of 14). The penny suddenly dropped as to why I felt like I'd been pushing shit uphill for most of the preceding year and the cause of my persistent diarrhoea (which I'd assumed was early IBS, inherited from my mum, so had ignored). No other symptoms though, oddly. No skin pigmentation, no salt cravings. I obligingly went into crisis four days after the neurologist got my fairly startling blood results, so I'm still in a relatively high daily dose of 10/10/10 of hydro, plus 100/100 of fludro. I had a day curve to establish the doses and times, which was a game-changer. I've finally got back to work full time after 9 months off sick.

Does anyone else get migraines as well? The chronic daily kick-in-the-head-with-every-position-change headaches have gone with the right steroid cover, but I still get awful migraines every one to two weeks which are really getting me down. I'm still under the neurologist for those but it's just taking months to get anywhere. I've heard of another Addinsonian in my workplace who is also under a neurologist for cluster headaches, so wondered if it was 'a thing'.

Amiable · 28/06/2017 10:09

So glad to find you! I have been a MNer for about 11 years, but more an occasional poster. However, I am currently being diagnosed with Addisons, as well as being checked for thyroid issues, autoimmune hepatitis, and coeliac disease - phew!

Everything started about 2 months ago, when I started feeling particularly rough, exhausted & nauseous. GPvisit led to blood tests which led to diagnosis of severe hypothyroidism and me taking 50mcg levothyroxine daily. However, 2nd blood tests 6 wks later showed normal thyroid function, while I was clearly still not at all well. GP referred me to see an endocrinologist, but the 1st appointment with the NHS was over a month away, so I went private through DH work health insurance, and got an appt 3 days later.

While with the endocrinologist my blood pressure plummeted and I was immediately taken into the ICU. On the way I started going into adrenal shock, and the ICU team 'saved my life', as 4 different consultants later told me! Anyway, that was last Friday, so I am now sitting in the ward, having spent 4 days in ICU, having undergone many different tests and still waiting for a final diagnosis.

I know my adrenal function is shot, but is that because of the adrenals themselves, or the pituitary? What about the thyroid? And the liver? And do I have coeliac disease? How long has this been going on? What caused it? And how the hell am I ever going to be able to administer an emergency self-injection if I need it?!!
Yeah, just one or two questions!

Well, I'm going to be here for at least another day or two so I just have to wait for all the results to come through (I'm having my short synacthen test at the moment for instance) and then have all the pieces put together.

Hope all you Addisonians (what do we call ourselves?!)are doing well and I'll update when I know what is going on here.

Surfingwhippet · 09/07/2017 21:29

Hi Amiable, you sound as though you have as many questions as I had at the start. To put it in simple terms if your adrenals don't work that's what's known as primary Addison's, if your adrenals work but your pituitary doesn't ask them to that's known as secondary adrenal failure.
I have a non existent thyroid too. It's probably the thyroxine which increased your motabalism which in turn accelerated the Addison's.
They say the adrenal function has to be as little as 10% for you to get any symptoms.

Have you had your diagnosis yet? I would imagine they will sort the Addison's first then look at everything else

chameleon71 · 19/07/2017 17:16

Am Addisonian - yet to meet any in real life so nice to meet you all!

Was diagnosed 25 years ago and have run 12 marathons since!

Am on 10/5 hydrocortisone, 150 fludro plus a night time prednisolone - also on thyroxine.

I have annual consultant check ups and find that is generally sufficient to tweak the doses now. The prednisolone is a newish dose as my skin had started going very dark again (an initial side effect all those years ago) - as the life of the hydrocortisone wasn't enough to get me through the night. It's working well.

I do sometimes still get that brain fog feeling -especially in hot weather like we had recently - and then I will just double my early evening dose of hydrocortisone. And I always double up when I'm ill or running anything over 20 miles that day.

There is a self help group online which has some good resources - about the injection etc. Touch wood I've never had to use it as doubling the dose has worked through illness and the one hospital stay I did have was dealt with by intravenous hydro....

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