Addison’s disease, how do you cope?
Posted , 4 users are following.
Hi guys, I got diagnosed with Addison’s in May 2017, I am 22 years old, I’ve read quite a few of your discussions about Addison’s disease and just thought i’d ask, how do you cope with it I seem to be off work all the time because I’m vomiting or just genuinely weak and floppy, how do you cope? Do you work? What jobs do you have? Thank you in advanced for any responses I get it is much appreciated!xx
0 likes, 10 replies
1941john jade06129
Posted
Dear Jade
I'm sorry to hear of your ongoing problems - there is something not right here, which you really need to follow up with your GP/Endo. I was diagnosed with Addison's at your age in the 1960's and once set on the replacement therapy my sickness/diarrhoea, weakness etc quickly went away. I don't have any problems 'coping' with Addison's provided I follow the 'rules'.
1. Always take your tablets as prescribed every day. At your age it is easy to forget as I sometimes did.
2. Always double/triple your dose if you have any infection
3. Tell any doctor/nurse/dentist etc that you come into contact with that you have Addison's
4. Carry a blue card with you at all times. Foreign language versions are available on the web.
5. Have an emergency injection kit with you when travelling abroad
Best wishes
jade06129 1941john
Posted
Thanks jade
melissa1977 jade06129
Posted
That's not good at all! Your meds must be off! I've had addison's for 15yrs and I work in a warehouse 45hrs a week. Call your doctor and make sure to triple up on your meds when you're sick.Good luck!
jade06129 melissa1977
Posted
Roddy999 jade06129
Posted
Hi Jade, just to add another voice to the chorus of "problem? what problem?", so your experience is not typical and you need to query. I set alarms on my mobile for 08:00 (10mg), 13:00 (5 mg), and 18:00 (5 mg).
As you may have to wait a while to actually see your doc, this is one that you ought to be able to do on a phone appointment. They call you when they have a gap so it has to be when you don't mind who might overhear.
Do bear in mind that Addison's is not common and so your doc is unlikely to be able to give you a quick answer of the top of their head. I'd be worried if they did!
jade06129
Posted
Roddy999 jade06129
Posted
I'm not a medic but that goes against what my endo and everything I've read says. If you didn't have Adisson's, your body would produce about 20mg a day of cortisol in a circadian rhythm, max at 09:00, min at 04:00. Hydrocortisone is a lab copy of cortisol and your dosage should try to match the natural cycle as much as is practical. 10mg at 20:00 is too much too late in the day. Do get in touch with the Adisson's Society for an info sheet that you can take to the doc, you can probably download it.
It is not goof but not enough to explain your symptoms. So deep conspiracy theory time now! Has you thyroid function been checked? are you producing breast milk for no reason? menstrual cycle disruption? Fingers or jawbone enlargement?.
jade06129
Posted
Roddy999 jade06129
Posted
Ok, that's a little more reassuring, I thought you meant you were taking 10mg at 8pm. Yes, your sick day protocol is correct. Have you been given an emergency injection kit? [When seriously ill (haven't been keeping down your medication), you need to inject 100mg and call an ambulance]. If not, you need to nag your GP practice.
It occurs to me that in the meantime a pharmacist should be able to tell you whether it is "something you should query" (they'll never contradict the doctor in public!).
I looked at the leaflet that comes with my HC and it mentions "malaise" as a possible side effect. I suspect that this is for "normal" people not replacement but I did read a case where a patient on replacement regime could only cope by taking quarter tablets throughout the day and night. But that was only writen up because it was remarkable - most people are fine on the standard dosage scheme.
jade06129 Roddy999
Posted