my daughter just diagnosed with addisons disease

dont know why that printed so many times haha sorry evryone x

Hi,

Had rouyine blood tests yesterday. She had a panic attack and nearly passed out..going to see what comes back and go from there. How is your daughter? Did u find out why her blood pressure was high?

ye she has high blood pressure and it is causing concern because its not typical of addisons disease as you would usually have low BP , we are now waiting for results of her heart scan just hope to god nothing else is goin on. they have told us when you have addisons you normally have some other hormone problem aswell. its an on goin nightmare at the min . i feel for you all cos that is what my daughter was like panic attacks and she had no energy and was so thin and small she just looked so ill it was awful, she felt much calmer when we took her out of mainstream school and put her in a hospital school and me or my husband would take her each morning and stay with her for the school day then bring her home she couldnt even go anywhere without us. thats just a little bit of how ill she was but since diagnosis she is a lot better in herself and eats fine now but its so stressful for the whole family i realy do know what your goin thru, if you need to chat am here, take care x

Hi,

Sorry that you are having such a difficult time at the moment. My daughter is ok with school currently which I never take for granted (as this has not always been the case). Are the hospital schools in the UK? I really hope that you're daughters results are ok and that you can get back onto an even keel as a family. I know how it can be all consuming. I am also here to chat if you need to. X

ye we have a hospital based school which your child has to have a medical reason to attend and it was the best thing we ever did cos it took so much pressure off her and ther is only about 5 kids in the class and a lovely calm place to learn when your not well enough to go to school. are you from the uk or another country? and thanks its good to know we can sound off to somebody else, xx

Hi, yes I'm from the UK but had never heard of a hospital school before. It sounds great.

I was diagnosed with high blood pressure at 12 and diagnosed 2 years ago with Addisons at 30 years old, it took them forever to figure me out. Since diagnosed I still have high blood pressure but I didn't fit the classic criteria, generally you have high potassium levels but mine were dangerously low, that was because the blood pressure medication contained diuretics causing me to pee out potassium, sodI'm and chloride causing severe electrolyte imbalances. I was quite heavy for many years and never felt good but then I started dropping weight like crazy, I lost 52 pounds in one month. However since my diagnosis I got diagnosed with hypopituitaryism, hypogonadism, hypothyroidism, diabetes.. This falls under one disease called Autoimmune Polyendocrine Syndrome type 2. I was first diagnosed with hypogonadism and hypopituitaryism but never felt good with treatment then they discovered the Addisons disease which they over treated it with prednisone, decadron, and cortef all at once causing it to be over compensated amd turning into Cushings Syndrome making the blood pressure higher and I became extremely swollen. I had to go through a period of titration from the steroids Until I got to the lowest dose possible to substain life. Cortef works so much better because it has a shorter shelf life of 8 hours as opposed to the others for up ton72 hours and has less side effects. The steroids can easily raise the blood pressure. I've never felt great and struggle with energy, I don't feel like doing much and I'm usually withdrawn, I want to do everything just like others as my mind still functions normally for the most part but my body want allow me to do a lot of things because I stay so tired and irratable Which often is mistaken for depression. Because my addisons disease wasn't exactly like others It went undiagnosed for a long time. If she still doesn't feel well after treatment for the Addisons they may want to look into her other endocrine glands and consider APS type 1 or 2. Its been hard for me to cope and be happy because others don't really understand that I feel as sick as I do and sometimes I have good days but they are mostly bad which is confusing to family and friends. My biggest complaint is its taken away my ability to want to succeed and thrive in life. I think I would cope better if I had support, understanding and help doing small task that can seem so overwhelming because of the tiredness. I hope this gives you some insight and something more to look into. Best of luck

Best wishes

Hi, I was diagnosed at 17 years old with same symptoms but my blood pressure is usually on the low side i am now 54 to understand this complex condition you may wish to read up on what the adrenal gland produces- Aldosterone is the main mineralcorticoids produced by the Adrenals it helps to regulate the body's sodium and potassium levels, blood volume and blood pressure your daughter may have to have a renin test which is a blood test that you have to fast for and you also have to lie down and stay very still for about 30 min before bloods are taken,I found it easier to break down each chemical produced by the adrenals their impact on the body by google  ( lots of info ) you may also wish to look up hyperaldosteronism, your daughter may not be excreating enough salts so may be building up fluids which may not be excreating through the kidneys efficiently, your daghters endo consultant will want to look at this some patients may need to take fludrocortisone alongside their usual steroid to achieve the right balance, i know how fluid balance is important as i dehydrate very quickly and always seem to need more fluids this is very important on hot days and holidays and after exersion but i am sure her consultant will get to the bottom of this as you know these test also take longer to process so waiting for an answer does take a bit longer, hope the out come will arrive soon, if you wish to talk at any time please dont hesitate to make contact as i know only to well what you and your daughter are going through. Kind Regards ,Maria.

Hello I have had addisons disease I have had it for 23 years now I have been in and out of hospital so mean times now

Hello Anne Marie

I have been flirting with Addisons for the last 6month , I'm 50 years old and should have a firm diagnosis this week hopefully , the last test was botched so had to have the synathen test again.

I too suffer from really high blood pressure and don't understand as it's not in line with Addisons , I have suffered for years with fatigue , bad crushing head always in the afternoon, joint pains etc , I see your post is from 5 years ago and hopefully you would share any info with me about how your daughter was medically cared for after .

Thankyou 

Colin