my daughter just diagnosed with addisons disease

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hello everybody,my 17 year old daughter has just been diagnosed with addisons disease after years and years of suffering, doctors told us she could be anorexic but we all knew 100% it was not about body image she just could not eat through severe anxiety her puberty was delayed and at 13 she struggled to reach 5 stone, it has been heartbreaking for us all over the years but as a family we all stayed as strong as we could, my daughter is now on steroids for life which was a real shock to us cos we had never heard of addisons or cortisol or anything at all related to it but we made every effort to get informed about it all. she is now so much better in herself except she has got very high blood pressure which is not typical of addisons so is now having to undertake lots of scans and tests to see what is causing the high BP, does anybody have addisons and high BP we would be very interested to hear from you thankyou x

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    Hi, my nephew has addisons disease also, since being diagnosed generally he has been well, recently he is very low and I think he believes he is the person that is dealing with this and suffering the same symptoms, as a family we are doing all we can to keep him upbeat and take his mind off it, but it is difficult to see him so low at the same time, have you had this? How did you help bring her out of a low state of mind? X
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    I wonder if you can help me. My daughter is almost 12 and has just been diagnosed with generalised anxiety and a food phobia. However I am wondering if she has Addisons. She is very underweight at 31kg and a bmi of 12.5. Anorexia has also been ruled out as she is desperate to put on weight but can't bring herself to eat certain things. She has lots of very low moods and I have struggled since she was 7 with her chronic anxiety resulting in changing schools etc. Also no signs of puberty either? Desperate to get to the bottom of it. Any advice greatly appreciated.
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    • Posted

      Hey, I'm 13 years old, I was 13 in May, but in March I was diagnosed with Addison's Disease. My dad has Addison's disease also, so that is VERY rare, as only 14 in 100,000 people have it. That's 8000 people in the UK. It's ironic that I was diagnosed in Addison's disease awareness month but I just wanted to say that my symptoms were being underweight, sickness, fatigue when standing or sitting, salt cravings, ery high potassium, low sodium, low blood pressure, fainting, and I was very weak. I am okay now, even though I have to take 2 different types of tablets and split them and take them 4 times a day for the rest on my life. I just wanted to tell you that if our daughter needs anyone to talk to, I'm here, as we are the same sort of age. Hope I helped smile
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    hello, your story sounds so like ours, we fought for years with my daughter seein countless medical peaple and trying every avenue we could to get help. we knew she didnt have anorexia or any other eating disorder she just could not eat because of severe anxiety in the end she was prescribed scandishakes which is a food substitute sort of a milkshake packed with all the nutrients she needed. it is heartbreaking to see your child suffer like this and my message to anybody in the same situation as us is ask for special blood tests by an endocronologist who specialises in addisons disease thats how we got a diagnoses after years of suffering. the best thing we did was take our daughter out of mainstream school it took a lot of pressure of her as stress is a major factor in addisons. now on steroids for life she is coming to terms with her illness and is feeling much better in herself. if i can be of any help plz get in touch. ps. insist on your child getting tested because addisons can be serious if not managed correctly gud luck everyone. xx
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    hi gemmaw, yeah my daughter does have very low mood days but its just part of the anxiety that goes with addisons disease, if your nephew is on the right dose of steriods he should start to feel so much better, our daughters puberty was delayed and that did course problems and tearful low moods, hope things sort out for you all. xx
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    Thank you so much for your quick response. My daughter is waiting to see a dietitian to get supplement drinks as well! Our stories do sound similar don't they. I feel for you struggling to find out what was wrong. It is so upsetting. I'm going to take your advice. Only problem will be getting my daughter to take a blood test as she is so anxious about everything. I will let you know what happens.
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    my dauhter was the very same she was so anxious about everything and the thought of needles terrified her but she new it had to be done. it is such a very rare disease and we had never heard of it, our main concern now is to keep her well and luckily she is very sensible and takes her tabs on time we are still learning as we go along, she has appt at hospital this week abt high BP so bit worried at the min. all the best to you and your daughter take care and keep in touch. xx

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    The GP thinks Addisons is a long shot as she has no pigmentation on her hands and her symptoms are generic to other illnesses. His going to do blood test for everything else-thyroid etc.

    Hope your daughter does ok at the hospital.

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  • Posted

    my daughter has never had skin pigmentation at all not all peaple with addisons have every symptom and to be fair it very rare even gps dont know an awful lot about it, i hope its not tho cos its very stressful and worrying but just see how your daughter gets on but just keep it in mind incase things dont improve but good luck and keep in touch x

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    my daughter has never had skin pigmentation at all not all peaple with addisons have every symptom and to be fair it very rare even gps dont know an awful lot about it, i hope its not tho cos its very stressful and worrying but just see how your daughter gets on but just keep it in mind incase things dont improve but good luck and keep in touch x

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    my daughter has never had skin pigmentation at all not all peaple with addisons have every symptom and to be fair it very rare even gps dont know an awful lot about it, i hope its not tho cos its very stressful and worrying but just see how your daughter gets on but just keep it in mind incase things dont improve but good luck and keep in touch x
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  • Posted

    my daughter has never had skin pigmentation at all not all peaple with addisons have every symptom and to be fair it very rare even gps dont know an awful lot about it, i hope its not tho cos its very stressful and worrying but just see how your daughter gets on but just keep it in mind incase things dont improve but good luck and keep in touch x

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  • Posted

    my daughter has never had skin pigmentation at all not all peaple with addisons have every symptom and to be fair it very rare even gps dont know an awful lot about it, i hope its not tho cos its very stressful and worrying but just see how your daughter gets on but just keep it in mind incase things dont improve but good luck and keep in touch x

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  • Posted

    my daughter never had any skin pigmentation ever cos not everyone with addisons have every symptom,to be fair gps dont realy know much about addisons cos it is so rare but hope for your sake its not cos we are so stressed and worried coming to terms with it, just keep it at the back of your mind incase things dont improve in the near future. good luck wish you all well and let me know how things go. x
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