As you might know, there is no doubt in my mind that I have Addison’s Disease. However, no doctor has ever uttered those words in my presence, so I want it confirming by my GP. In writing would be nice, but verbally will do. The disclaimer in line three is so I can’t be accused of blaming him.
The person at fault is the fruitcake consultant who was so obsessed with colon cancer, which wasn’t even his field, he neglected to inform me about what was really wrong with me. For those who missed it, no, I do not have colon cancer, nor was there ever any valid reason to suspect that I did.
Dear Dr. Xxxx,
I have a question – Do I have Addison’s Disease?
NB: No criticism, express or implicit, is intended of any individual.
Since I was in APH this time last year (all references to APH, unless otherwise specified, relate to this period), I have been taking hydrocortisone tablets. While there, adrenal insufficiency was mentioned just once, more or less in passing, but no other information, either at the time, or since, has been provided by anybody.
Online research (primarily based on information obtained from the Mayo Clinic in the US, which maintains one of the best publicly accessible medical databases on the Web, the Addison’s Disease Self Help Group, and NICE), taking into account the problems which got me hospitalised in the first place, which are a perfect match for Addison’s
- Muscle weakness and fatigue (Check)
- Weight loss and decreased appetite (I lost around 35kg)
- Darkening of your skin (hyperpigmentation) (Check)
- Low blood pressure, even fainting (Esp. the latter)
- Salt craving (hard to tell – I’ve always had to work to limit my salt intake)
- Nausea, diarrhoea or vomiting (all three)
- Muscle or joint pains (both)
- Depression (A major problem then, and still is. Unfortunately, tricyclic antidepressants simply stop me thinking, which isn’t acceptable (my brain is pretty much the only part of me that still functions reasonably well), and SSRIs cause me to cough so violently and uncontrollably that my lungs bleed. I am, though, terribly tired of dealing with the constant suicidal ideation – it’s dreadfully wearing and one day, it’ll win.)
and followed by the hydrocortisone, leaves me in no doubt that I have Addison’s Disease.
My 30mg daily maintenance dose of hydrocortisone, being within the normal range for the treatment of Addison’s (source: BNF), would tend to confirm that.
I have, by the way, found out the reason for the original two tabs in the morning and one after lunch prescription, and have reverted to that, though I am concerned that the need for this was never explained to me. Nor was the fact that I must never stop taking hydrocortisone, which I have done on several occasions as it can cause stomach pain and I have no urge to experience a gastric bleed (my request, while in APH, for enteric-coated tablets was treated with derision), and also while in APH later last year (August and November, both), the delivery of hydrocortisone was massively erratic.
Assuming I do have Addison’s (and personally I have no doubt), then I feel there’s a need for rather more hydrocortisone to be available to me. What I have now is the bare minimum required for maintenance, with nothing in reserve to treat even a minor crisis, as I have had to do in the past week, and which is what has prompted this letter.
The past week has been highly stressful, both physically and emotionally. The emotional part is private, but medically I have had a series of very severe nocturnal asthma attacks, occurring at 03.30 – 04.00 every time, for reasons which elude me, and lasting for hours. At first I thought it was due to the increase in morphine but a process of elimination showed that the culprit was a new batch of Melatonin (I have serious problems sleeping). I stopped taking that, put the morphine back up to what we agreed – no more attacks.
However, the attacks*** also made me feel extremely ill, with sudden weight loss, nausea, profound weakness and muscle pain. An additional 20mg hydrocortisone per day (based on advice on the NICE website re Intercurrent illness – adjustment of steroid dose), in the evening, helped with that and also ameliorated the attacks, which have now ceased (this has used up the last of my reserves from my last stay in APH).
Finally, the NICE Self-care advice page ( http://cks.nice.org.uk/addisons-disease#!scenariorecommendation:2) details a whole raft of information that should have been provided to me, preferably prior to discharge from APH in March last year, and in writing as I was still very ill, and has not been either then or since. Most of it I have found out for myself . I have no innate objection to online research – I’m very good at it – but let’s be frank here, in the case of Addison’s I shouldn’t have been left in the dark, to fend for myself, that was dangerous – the information should have been provided right at the start, by APH. That’s where it was diagnosed, after all.
Ronald W. Graves.
***I accept that given the severity of the asthma attacks I should have been in hospital – any hospital but APH and I would have been – but I felt the risk of picking up respiratory infections, plus the fact that I still have open lesions on my leg (healing, but very slowly), outweighed any benefits – I was safer at home.
Let’s never forget that in April-March last year I contracted 5 separate hospital-acquired respiratory infections, culminating in my having my right pleural cavity aspirated. I really don’t need any of that again.
The only times I’ve stayed free of infection there is when I’ve had a side room. The bays are lethal, and perfectly designed to spread infection. On my last stay even the nurses agreed about the infection risk in the bays, and it’s a risk I will not voluntarily take ever again.