Addison's Disease - any other Addisonians on here???

[Queenie18]

I have Addison's Disease and have been diagnosed for 7 years. I still struggle with it sometimes so would like to hear from other Addisonians and how they manage with it.

[RedApple Administrator]

Hello Queenie18,

Do you also have a thyroid condition? Whilst there might be a few people here who also have Addision's disease, this is primarily a forum for people with Thyroid conditions, so that is the main topic of conversation here

[Mistral in reply to RedApple]

Queenie 18 This is the second time within a week that I have seen a negative reply to someone with Addison's Disease on Thyroid UK's part of Health Unlocked. I have always found the forum to be kind and understanding. I was sort of diagnosed with Hypothyroidism l4 years ago, privately, as the GPs tests were always within the wondrous "normal range" whether taking it or not, although I clearly was very poorly. A desperate fight ensued and eventually I went privately through the late great Dr Skinner whose ministrations helped the terrible weight gain and fatigue, but I was bullied by my GP who at every chance insulted Dr Skinner, and in tears I was taken off off Thyroxine only to become even more unwell so they reluctantly gave me 100mcg which I have been on for years, even when I moved from Scotland back to England the dosage remained the same and I just soldiered on, but, I never thrived on this dosage. I asked for T3 to see if it would help, but my request was refused. Over the years the fatigue and pain became unbearable, I asked for tests for B12 deficiency but only one blood test was done - told the usual rubbish that I was "within normal range" - I wasn't, but was refused B12 injections, all I was offered was anti-depressants. With private medical advice I requested all my NHS blood tests which showed I was B12 deficient, I also had on line Blue Horizon labs tests and private blood tests done and was diagnosed with Stage 2 Addison's Disease, whereupon I was contacted and told I was very ill and must start medication immediately. I am very lucky my recovery has been amazing, self injecting B12 taking low dose Hydrocorisone (Prednisolon) three times a day and again, after being taken off Thyroxine, I also take this, all sourced privately at my own expense.. Please note If you don't already have hypothyroidism, when you are diagnosed with Addison's it is highly likely that you will become hypo. I joined the Addison's self help group, but I don't know if it is because this condition is rare but there is no interaction or help on their forum so where do people like me or Queenie 18 go. It is frightening to know that you could have a life threatening episode and because it is not recorded by your GP you are stuffed. if I hadn't had the guts to take things into my own hands I could have died. This could still happen as I know my GP would not accept my diagnosis, and would refute my recovery, and if I tried to push to get my condition recorded and accepted on the NHS I would be struck of his list. So I live in hopes I don't have an episode where I am rushed into hospital as this life threatening condition is not recorded and I won't get the necessary life saving medication. Note I was refused a referral to an endocrinologist, they both decided my Hypothyroidism and symptoms didn't warrant it. It is also frightening that Queenie 18 has had the condition for 7 years and is still in need of advice. Please don't brush us off, we are actually quite desperate for help and a bit of kindness.

[helvella Administrator in reply to Mistral]

I don't see anything negative about RedApple asking: Do you also have a thyroid condition?

Sadly, the original poster has not responded.

[granniem]

Hi Queenie18, have you joined the Addison's SelfHelpGroup.org

You will find lots of advice and help and you could discover a fellow sufferer(s) in your area to meet up with who will make you feel that you are not alone. I'm just waiting for my confirmation results and ASHG has a wealth oh information that has and is of great help to me.

Good luck.😀