Addisons Disease

macadam

Anyone out there , got addisons , what you taking and how do you feel ?.

Is there many people with it?.

macadam

Has anyone heard of this???????????

kangaroo

macadam wrote: »

Has anyone heard of this???????????

Yes, I have. I know a few people with ME/CFS who have been diagnosed with borderline Addison's following failing ACTH tests and the like. I follow the ME/CFS literature and an Italian doctor, Dr Baschetti, had various pieces published pointing out "the 42 clinical features that chronic fatigue syndrome shares with Addison's disease".

So I know how debilitating ME/CFS can be so you have my sympathies. And of course I know there are some extra problems associated with Addison's.

Hopefully somebody else will reply in time.

LegacyUser

I have it - diagnosed 2 1/2 years ago. Don't know anybody else who has it though.

Splendour

I have severe Adrenal fatigue though it is not generally recognised in mainstream medicine. I had this diagnosed by an adrenal saliva test.As far as most Docs and Endos are concerned you either have Addisons or you don't-no middle ground!

Addisons disease is when your adrenals have simply quit producing cortisol which is vital for health and life! The cure for this is hydrocortisone and this will be for life.

Did you have an ACTH test to confirm this? And have you been subscribed hydrocortisne? Also as this is an autoimmune disease you will have to be careful with other autimmune diseases such as hashimotos (hypothyroidism).

Here's a little snippet of usless info for ya-JFK also suffered with Addisons

kangaroo

Splendour wrote: »

Here's a little snippet of usless info for ya-JFK also suffered with Addisons

Ye, I have heard that quite a few times - and that they kept it quiet.

In a documentary before Xmas on RTE1 (after midnight), they claimed the Addison's treatment made him a womanizer. They may have said that it was in its early days at that stage i.e. the effect might be different now. Or it could be just an excuse he/others came up with!

Splendour

kangaroo wrote: »

Ye, I have heard that quite a few times - and that they kept it quiet.

In a documentary before Xmas on RTE1 (after midnight), they claimed the Addison's treatment made him a womanizer. They may have said that it was in its early days at that stage i.e. the effect might be different now. Or it could be just an excuse he/others came up with!

Hah, no doubt an excuse-yet again another cover up by the American government albeit not as important as other cover ups!

In fact, it they think it did affect his sexual behaviour, it would be more than likely AFTER he'd been diagnosed and prescribed HC, as low cortisol can affect sex hormones too. Apart from the fact that with undiagnosed Addisons he wouldn't have had the energy to womanise...

macadam

Yes I did have the ACTH tests done and doctors diagnosis was correct,
have addisions now for almost 5 years and feel great , taking 20mg of hydrocortone per day and .15 of florinef.

Before i was diagnosed i was weak about 10 stone , very dark skinned,with no appetite or interest all i wanted to do was sleep,now i can do everything have several interests, golf , shooting and workingout.

Sometimes i get a bit of a dull patch when i miss a dose but other wise i am fine, thanks to a GP who had experience with this before, if i stayed with my last GP i dont think i would have been around these last number of years, he had not a clue and that was over 3 years, all he kept prescribing was vitamins and rest.

As they say doctors differ and patients live;)

Helen_

macadam wrote: »

Yes I did have the ACTH tests done and doctors diagnosis was correct,
have addisions now for almost 5 years and feel great , taking 20mg of hydrocortone per day and .15 of florinef.


As they say doctors differ and patients live;)

Sorry about dragging up an old thread, I too am an addisons sufferer, I hope you wouldnt mind answering a question for me, how long was it until the bloating goes down or does the weight ever come off. I too am on 20mg of hydrocortone and 1.5 of florinef. Iv have been diagnosed over a year ago and there is still no sign of the weight coming off and same for the bloating.

Many thanks for the future replies,
Helen.

Splendour

Helen_ wrote: »

Sorry about dragging up an old thread, I too am an addisons sufferer, I hope you wouldnt mind answering a question for me, how long was it until the bloating goes down or does the weight ever come off. I too am on 20mg of hydrocortone and 1.5 of florinef. Iv have been diagnosed over a year ago and there is still no sign of the weight coming off and same for the bloating.

Many thanks for the future replies,
Helen.

Hi Helen, have you had your thyroid checked out? I don't mean your TSH but your FT3 & FT4.

CathyMoran

I may have it - was spotted as I am pregnant again - have had the symtoms a long time. Also have thyroid issues (graves as a child) and type 1 diabetes and sarcoidosis - also a cancer survivor. Sorry mods for dragging up and old thread. Just got a bit upset when I googled it.

moffit

kangaroo wrote: »

Ye, I have heard that quite a few times - and that they kept it quiet.

In a documentary before Xmas on RTE1 (after midnight), they claimed the Addison's treatment made him a womanizer. They may have said that it was in its early days at that stage i.e. the effect might be different now. Or it could be just an excuse he/others came up with!

I must remember that excuse

byhookorbycrook

Congrats on the pregnancy,Cathy.

RUCKING FETARD

byhookorbycrook wrote: »

Congrats on the pregnancy,Cathy.

+1

Unless byhook missed the posting dates?

siobhansiobhan

just say this thread as looking for someone who has addison. have someone who has it and would like some information on it. its a disease that is rear and not much is known about it in ireland. someone said using paint, weedkiller alot without masks has something to do with it, who knows? any one know

macadam

Siobhan,

I feel healthier now than I have ever done I use weedkiller at work no different effects than before, I am also running over 20 mile per week refereeing gaa adult matches Im actually training for the Dublin Marathon, if Im not active the weight piles on. Once you get sorted with the correct amount of cortisone you can live a normal life, just be careful with infections and the runs!!

siobhansiobhan

thanks great advise. well done for fighting it and good luck in your training for marathon. the person i know who has it is in her 70's and isnt up for running but interested in foods or tips on what she should stay away from if you know of

murria

A woman I work with was diagnosed with Addisons in the last couple of years. We all thought she had axorexia and was on sunbeds before she collapsed and was seriously ill. I will ask her to join this discussion if she can.

Tropheus

I was diagnosed with secondary Addison's about 3 years ago . It's my pituitary that isn't producing enough ACTH rather than my adrenals not producing enough adrenaline. I'm in 10mg hydrocortone a.m. and 5mg p.m. I do feel better with medication, but not near 100%. I have also been diagnosed with Fibromyalgia which may be a contributing factor.

Iospir

My husband is awaiting proper diagnosis and they've put him on 20mg a day in the meantime but he's lightheaded and weak a lot of the time. Is this usual? Should he be on a higher/lower dose? He's a big guy. No doctors will talk to us about it because we have an appointment with the Endocrinologist but that's not for ages yet. We're afraid he's reacting badley to the meds but the hospital are no help until we go in a few months time. Aargh!! Any advice from other Addisonians?

siobhansiobhan

sorry cant help you as you may need to got private to make sure it is it. mits my mother who has it and must find out what tablets she takes. Shes doing really goodnow but it took time. good luck

macadam

Iospir wrote: »

My husband is awaiting proper diagnosis and they've put him on 20mg a day in the meantime but he's lightheaded and weak a lot of the time. Is this usual? Should he be on a higher/lower dose? He's a big guy. No doctors will talk to us about it because we have an appointment with the Endocrinologist but that's not for ages yet. We're afraid he's reacting badley to the meds but the hospital are no help until we go in a few months time. Aargh!! Any advice from other Addisonians?

Thats the way I was before diagnosis lacking energy light headed and no appetite.
When I was diagnosed they put me on a high dose and we worked it down to what Im on now which is 10mg of Hydcortisone am and 5mg pm plus .1mg of Florinef, I have actually never felt better stronger with a massive appetite for good healthy food.
I didnt make the marathon injured before the half with both my achilles tendons inflammed, which could be caused by taking the steriods.
Can you tell me what part of the country you are in?

lion_bar

Iospir wrote: »

My husband is awaiting proper diagnosis and they've put him on 20mg a day in the meantime but he's lightheaded and weak a lot of the time. Is this usual? Should he be on a higher/lower dose? He's a big guy. No doctors will talk to us about it because we have an appointment with the Endocrinologist but that's not for ages yet. We're afraid he's reacting badley to the meds but the hospital are no help until we go in a few months time. Aargh!! Any advice from other Addisonians?

It may depend on how he became aware of the illness. Most of us Addisonians discover it when they have a 'crisis' and need very high doses of hydrocortisone coupled with fluids, for a couple of days, gradually reducing. He may need Florinef as well if he has Addison's disease, as many including me do. Is he losing weight? Does he feel nauseous when standing but not when lying down?

Iospir

Thanks for the replies. We are in Dublin.
He has another illness (most of which sufferers eventually develop Addisons) so we are 99% sure it is it. One of the consultants dealing with this put him on the hyrocortisol (20mg) because we were going on holidays to a hot country and the last time we did that he had what we now believe to be a crisis (went unconsious 3 times). We presumed it was heatstroke that time and gave him lots of dioralyte which worked, thankfully. He's just worried that after 4 months on this dose of hyrocortisone with no florinef etc and not feeling well that he's doing more harm than good not being on the "right" meds yet.
I take it finding the right dose is a matter of trial and error? Did anyone else feel worse before they felt better with meds?

macadam

He needs to drink approx 2 lires of water each day and stay of the alcohol, also you should always carry a medicalert bracelet or necklace, just in case of an accident, this should have Adrenal insufficiency printed on one side and the medic alert symbol on the front.

Iospir

Thanks Macadam. I'll make sure he does that. He doesn't drink alcohol so that's an easy one but he definitely doesn't drink anywhere near enough water so I'll get nagging. You just reminded me about the bracelet which I've been meaning to get.

macadam

I've been meaning to get a medic alert/ICE card can anyone here recommend a company that does them in Ireland.

macadam

Anyone on here recommend an Endocrinologist its time for further investigation..

siobhansiobhan

macadam wrote: »

Anyone on here recommend an Endocrinologist its time for further investigation..

I agree. Hospitals don't know what to do with each case

aljud

Hi, did you find a good endocrinologist My son has Addison's, he's been diagnosed since he was eleven, he's been unwell for some time now but adjusting his meds and two endocrinologist s later still no improvement. Any advice would be appreciated.

macadam

aljud wrote: »

Hi, did you find a good endocrinologist My son has Addison's, he's been diagnosed since he was eleven, he's been unwell for some time now but adjusting his meds and two endocrinologist s later still no improvement. Any advice would be appreciated.

Sent you a PM..