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Addison's Disease?

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
T

Twitchy

Well-Known Member
Relationship to Diabetes
Type 1
Hi all...

Just wondering if anyone else 'out there' has Addison's disease? I'm currently waiting for a test to determine whether or not I have it (hypoadrenalism)... looks like it would mean tablets twice a day & an injection kit in case of emergencies. Apparently it's another of those lovely autoimmune conditions you tend to get if you've got one of the others...(bit like bestwick figurines it seems!!) 🙄 Just wondering if anyone could fill me in on the day to day reality of it, as there's scant info about...

Many thanks,

Twitchy x
 
Hi Twitchy,
I have the pleasure(not) of having addison's 🙂

If you have Addison's you will be prescribed HC (hydrocortison) and or prednisolone. Plus a drug called florinef ths helps you keep hydrated and stops your BP ending up under the floor boards.
It's an apsolute must that you take the steroids and on time every day of your life. Always carry info to say you have addison's and always make sure you have an emergency injection kit with you at all times. (It will save your life)
In times of illness/stress you will have increase your steroid doses as your body doesn't produce any. The rule of thumb is if you vomit twice you use the emergency injection and call an ambulance. (It's a bit like balanceing insulin)
This link has a lot of info http://www.addisons.org.uk/info/i_index1.html obviously it doesn't dwell on having the double wammy of diabetes as well

Hope it helps. Give a shout anytime if you want more info 🙂
 
Thanks for your reply Sue - I think it's reassuring! 😉 When you say "on time", what kind of margin for error is there exactly?! (Thinking of the rascally kid-induced state of permanent chaos I live in....!!!) Still hoping against hope this is just a virus or something, but apparently the BP results & some other tests are enough to merit further investigation, so have some kind of intravenous test to look forward to now. Sounds fun! 🙄

Thanks again,

Twitchy xx
 
Hi Twitchy the test is a ACTH stimulation test.

The ACTH stimulation test is a blood test in which the amount of cortisol in the blood is measured before and after an injection of ACTH, usually over a period of 60 minutes. Individuals with adrenal disease produce a comparatively small amount of extra cortisol in response to the injection. Different hospitals apply different thresholds to define how small an increase in blood cortisol means adrenal failure. An elevated blood level of ACTH should also be found.

If you are not feeling to bad at the moment you are very lucky not to have got to crisis point. Sounds as if you have a good team to spot a potential problem. 🙂

Meds 1st thing in the morning and lunch time if on HC. This mimics your body response to cortisol.

Addison's is life threatening and a bad cold can sometimes end you up in hospital if you don't understand your bodies need for extra steroids.
If you have a crisis, your bp and bs go through the floor boards 😡 A normal stay is 24 hours with an IV line pumping steroids into you. Then a 3 day period of double oral meds and feeling completely washed out.

You can live a normal life though as long as you remember the basic rules. 🙂
 
oh my goodness, that sounds darn scary!! Hoping even more than before now that the test goes ok & I don't have this condition - it does NOT sound fun! 😱 With two little walking germ factories (one at primary school, one at nursery!) sounds ilke I'd not need the injection so much as a permanent IV, eek! How on earth do you cope? I've been looking & I do seem to have quite a few of the symptoms, although apart from a marginal blood test & my BP dropping when I stand the rest could just be attributable to the aforementioned kids lol...fingers, legs, toes etc crossed that that's the case now...but seriously, thanks for telling me how things are - I'd far rather know what to expect & if there's one of many things this forum is great for it's getting at the facts the docs don't always want you to find out so you can ask them awkward questions hehe!

Thanks again! xx
 
Twitchy said:
oh my goodness, that sounds darn scary!! Hoping even more than before now that the test goes ok & I don't have this condition - it does NOT sound fun! 😱 With two little walking germ factories (one at primary school, one at nursery!) sounds ilke I'd not need the injection so much as a permanent IV, eek! How on earth do you cope? I've been looking & I do seem to have quite a few of the symptoms, although apart from a marginal blood test & my BP dropping when I stand the rest could just be attributable to the aforementioned kids lol...fingers, legs, toes etc crossed that that's the case now...but seriously, thanks for telling me how things are - I'd far rather know what to expect & if there's one of many things this forum is great for it's getting at the facts the docs don't always want you to find out so you can ask them awkward questions hehe!

Thanks again! xx
Click to expand...

Lol You will be fine, you have the 1st tool a pump, control is so much easier with a pump.
I have lived and worked on a farm for years and am still alive to tell the tale :D
Your body does tell you when you need extra steroids though, so as long as you listen to it you will be fine.
Other option is rehome the kids :D
 
Hi Twitchy I just wanted to let you know that I'm thinking of you and hope that everything works out ok xx
 
Pumper_Sue said:
Lol You will be fine, you have the 1st tool a pump, control is so much easier with a pump.
I have lived and worked on a farm for years and am still alive to tell the tale :D
Your body does tell you when you need extra steroids though, so as long as you listen to it you will be fine.
Other option is rehome the kids :D
Click to expand...

Oh how kind Sue! - look Twitchy - your kids can go and live with Sue in Cornwall - or perhaps she'll be willing to just have them for all the school holiday weeks! ROFL - that being the time when most people would gladly give em away ....... :D :D




























's alright, only joking!
 
trophywench said:
Oh how kind Sue! - look Twitchy - your kids can go and live with Sue in Cornwall - or perhaps she'll be willing to just have them for all the school holiday weeks! ROFL - that being the time when most people would gladly give em away ....... :D :D




























's alright, only joking!
Click to expand...

No problem I love kids...................... what time is lunch :D
 
LOL at you lot!! :D

I personally reckon it's not autoimmune, it's just the kids stressing me out that has worn out whatever squishy looking internal organ it is that makes adrenaline hehe! 😉 They might drive me mad but I love 'em... 🙂

Thanks for the info - it ls really, really appreciated! I'm an engineer by trade, I like to know all the gorey details no matter how scary, I like to know the worst case, so your replies have really helped!

Thanks again,

Twitchy xxx
 
they were talking about addison desease on saturday regarding the medical dog maybe you can apply for a puppy to be trained (01296 655888)
 
grahams mum said:
they were talking about addison desease on saturday regarding the medical dog maybe you can apply for a puppy to be trained (01296 655888)
Click to expand...

Really? That would be Amazing!...guess you have to meet pretty tight criteria though & I wouldn't want to 'do someone out of a dog' who needed it more...at least if it turns out I do have this condition & it gets nasty then that might be a good idea long term, depending how bad it gets...a good silver lining! 🙂 Thanks for the number. 🙂
 
i hope you can have one if is going to be a really good help
 
grahams mum said:
i hope you can have one if is going to be a really good help
Click to expand...

Most people with Addison's realise when they are in trouble and need to take action. There are a few though who have the unfortunate problem of a very fast onset of crisis an alert dog would lovely for that.
 
What's the symptoms?

Hi Twitchy hope u get ur answer soon never fun to wait.

Sorry for prob sound a bit daft... but they have done those Addisson's test on me for the last 5 years because I have such a bad trouble with hypos and sudden unconsciousness and they don't know why. However they have found that my cortisol (not sure how u spell it)level and one other level is only a 1/4 of a "normal" level but to me they have said its not Addisson's because the 3rd level is almost normal. Can't remember what they call the "3rd level" I'm constantly injuring myself broken ankle, broken arm, broken leg, number of concussions, fractured skull, stabbed myself a number of times as well, was driven over by a buss 3 years ago when I fell as I went of the bus. The paramedic's in the area there I live know me by name, address, partner, GP, work (when I had one)... like a friend 🙄
A friend in US her sis is a T1 Diabetic and she's said her sis hypos are awful... I use to complain about mine. That's why I wounder what's your symptoms or the reason why they check that on u? Any suggestions for anything who might be helpfull to me?? 😱
 
Hi MissMolly, sorry to hear your hypos are so awful!! 😱 My main symptoms are dropping BP when standing compared to sitting, and low cortisol levels - although I'm yet to have the intraveinous test...I've also been permanently exhausted for months whilst thyroxine levels etc are fine...plus I suspect there are several other symptoms that the doc was subtly asking me about without wanting to freak me lol...he did do the first blood test last year, so I guess there are enough indicators for him to keep an eye on me...?? :confused: My hypos are thankfully not too bad, but I've always put that down to me being diagnosed so young, I've always assumed that my body has somehow adapted over the years...or maybe I'm just really lucky!! 😱

All the best,

Twitchy xx
 
I've had Addison's for about 15 years now. It turned up well before the Diabetes and seems to be one of the many. many conditions I've got that doesn't actually cause me too much trouble as long as I keep taking the meds.

The main symptoms for me seem to be tiredness, aches and pains and dizziness, especially when standing. Before I was diagnosed I developed a nasty habit of falling over for no apparent reason. Also, my BP would drop and I would start stammering quite badly.

For the most part I seem to manage OK with relatively few problems, except the hypos. The theory now is the Addison's may be driving some of the more severe hypos I've had but 'they're' not sure of that since the meds are keeping my cortisol level within tolerance. Whatever that means.

Have they given you a date for the tests yet?
 
If you have low blood sugar due to addison's, carbs will not raise your blood sugar. Only steroids will.
@ Miss molly have you tried a different type of insulin to the one you are on?
A change and some education on how to use it might just solve your problems.
Many people can not use analogues so worth thinking about a switch and if not on analogues try it or another you havent tried.
 
AlisonM said:
I've had Addison's for about 15 years now. It turned up well before the Diabetes and seems to be one of the many. many conditions I've got that doesn't actually cause me too much trouble as long as I keep taking the meds.

The main symptoms for me seem to be tiredness, aches and pains and dizziness, especially when standing. Before I was diagnosed I developed a nasty habit of falling over for no apparent reason. Also, my BP would drop and I would start stammering quite badly.

For the most part I seem to manage OK with relatively few problems, except the hypos. The theory now is the Addison's may be driving some of the more severe hypos I've had but 'they're' not sure of that since the meds are keeping my cortisol level within tolerance. Whatever that means.

Have they given you a date for the tests yet?
Click to expand...

If the hypo is caused by low cortisol then carbs as stated in the above wont fix them.
What dosage of steroid are you on Alison and how do you take them? (As in timeing)
 
I do know that Sue, it's one of the reasons I have such trouble with Hypos. On a normal day, I'm on 2 HC (or 40mg per day) at the moment. I had some problems with indigestion so I take them with my meals (20:10:10).
 
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