A letter to my doctor re Addison’s Disease…

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)
  • Irritability
  • 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.

Yours sincerely,

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.

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21 thoughts on “A letter to my doctor re Addison’s Disease…

    • Well, the NICE website is a mine of information governing how doctors should treat Addison’s, none of which, other than prescribing barely enough hydrocortisone, is happening in my case. I’d like to see the explanation for that.

  1. Ron would you not consider booking a double app at your doctors asking your kind friend if she would take you. You would be able to discuss your problems and maybe have some blood tests to determine if you do have Addisons. In the last few weeks you have thought that a number of different things were causing your asthma attacks. It may be something as simple as washing your bedclothes at 60 degrees which gets rid of the dust bug mites. I am at the moment attending a pulmonary rehab course and have been told that is one of the most common causes for asthma attacks during the middle of the night.

    • I’m housebound, and they don’t do double appointments. And I have no doubt about Addison’s at all – I just want the support treatment I’m not currently getting.

      A process of elimination has shown up the asthma culprit – Melatonin (it might also be Ibuprofen, I was taking both). And, of course, Addison’s is nothing to do with the asthma attacks, other than that they ramp up my need for additional steroids. Dust mites can be a problem, but if they are they’re a constant problem, not three or four night of hell out of the blue.

      As for my kind friend, I have no idea. She seems to have taken offence at something – I don’t know what (OK, not true, I do know what – what I don’t know is how she can possibly be offended, it really is beyond me). Sadly, she might well be history and, since she’s ignoring me, there’s sod all I can do to try to salvage things.

  2. Yes there is. Maybe some things are best kept private not for the whole world to see. Send her some flowers,show her that you do appreciate her friendship. The talk today at rehab was about the use of oxygen,your sats have to be at about 88 or below before they would let you use it at home,maybe when you were admitted to hospital they had dropped as you were so unwell.

  3. Right, Sarah and Edd, no response yet but I put in a repeat request for hydro at the same time. Just been delivered. Now, the letter says that I need more than the basic 90 tabs a month to cover emergencies, like last week, so how many extra would you think I got?

    Correct!

    Bugger all!

    I’ll give him a bit longer, but the next step is telling him I want a referral to an endocrinologist. If he/she thinks I need support, then I’ll get it.

    According to NICE I should already have enough hydro tabs for emergencies which, basically, is anything at all that bumps up my stress levels. And for dealing with an Addisonian Crisis, which can kill me without prompt treatment, I should have a hypodermic and 100mg of hydro for injection. By me, or if I’m unconscious, by anyone with a steady hand who knows what they’re doing!

    What I actually do have, boys and girls, is nothing at all. And for being seriously pissed off about that, because it IS putting my life at risk, I’ve been told I’m paranoid.

  4. I don’t suppose you have sent a SAR to this hospital and also one to your GP? There’s a very good draft letter on Consumer Action Group (NHS forum) as a sticky post. The letter needs to contain a request that any redactions must be accounted for, giving the reason for the redaction and also a summary of it. It might be worth a shot to see just what the consultant told your GP.

    GPs charge £10 for access to computer held records and £50 for paper records (including scan copies and x rays)

    Getting hold of your records might give you some additions to your armoury.

    Best wishes
    Lucy

    PS: Always worth asking consultants to copy you in on their letters to GPs too. If they refuse, you know you need a different consultant.

    • The appointment letters always say if I want a copy of the correspondence, just ask but, generally, with the buggeration of dismal access on wheels, it gets forgotten.

      But, yes, thanks, I’ve had a copy of that CAG page for a while. A poor letter, grammatically, which really needs fixing. With GP records, I believe there is a cut-off point – it’s about 1985 or 6 – back beyond which you can’t go. In 2011 I got the record of a 4-day stay in hospital, during which they almost killed my through incompetence – I got the consultant to discharge me before they finished the job, and send me home with a sack of drugs. When I got my records – 100pages for 4 days – the contained no information that was of any value to anybody. I was told they were unredacted, and they appeared to be, but their record-keeping sucks. During that 4 days I was diagnosed with serious heart failure – you’d never know that from my records.

  5. Notes without the letters sent to your GP are hard going, irrespective of the quality, it’s the letters from GPs and Consultants that are really useful. The GP notes will be easier to wade through than the hospital notes.

    If a court demanded records prior to 1985/6 then the NHS would have to go to the salt mine in Cheshire where so many of our records are archived. So be it with the humble SAR of an ordinary person. They can get them, but you have to persist. If the distant past isn’t relevant to your current distress, then I’d leave the request for them out.

    You can also ask for any additions made to your records within the last 40 days to be provided by the GP/hospital, free of charge.

    Yes, the letter on CAG is a bit rough, but I figured, that as you are a stickler for grammar, you would sort it out with ease. It’s a good letter, because it’s important to specify “no redactions”. Many people get their records and find much is missing via unreported redaction with no explanation. They must give you a reason for any redaction.

    Good luck with it Ron!

    PS: Hasn’t your GP blown a gasket about you taking Melatonin to sleep?

    • He won’t if he knows what’s good for him – he stopped my bloody Amitryptilline!

      Melatonin used to work well, with no problems. Now it wont work at all, even with a double dose. Same brand, too, but I think they’ve messed with it. If so, they’re not admitting it.

      • Sometimes drugs will start working again after a break from them. I’m thinking endocrine inhibitors and blood pressure drugs here, it might hold for other drugs too.

        • Yeah – they have to keep jacking up my morphine as my body adjusts to it. Dunno what happens when we hit the max dose though . . .

          Not taken Melatonin for months though. When I got my clockwork bed I had no trouble sleeping until a couple of months ago. Now I’m lucky if I get an hour’s sleep all in one go. Except for the past two nights, when I’ve slept well. Odd, that, considering my stress levels are off the scale.

          • …when the morphine stops working, it’s time to ask to see the palliative care people. They seem to know more about pain relief than some GPs (just my experience) Yes, I clearly am living in rainbow-fantasy land, remembering when we all had access to these services, but if they can be found, they do have more in their armoury than GPs.

            This business of Addisons is probably doing plenty to bugger up sleep good and proper I’d have thought. Just a change in one filler or one type of coating on a pill can make a hell of a difference to how it works, Manufacturers test formulations for chemical continuity and action, not bio-availability when you take them.

            There’s argument a plenty between women taking endocrine modulators, doctors and the pharmaceutical companies who dispute that fillers and coatings affect the efficacy of a drug and unwanted/adverse side effects. Doctors deny it too. It’s worth keeping tabs on the brand and formulation of the generics I think.

            I thought British Pharmacopoeia formulations covered the whole formulation, but recently someone told me it only covers the active ingredients and specifies broad categories of other substances that can be used and must be appropriate to the active ingredients and method of administration.

            I think there is a case for a wage for patients sometimes.

            • Addison’s – and the steroids – are screwing up my entire life right now. Someone who’s very important to me simply can’t see that my problems – anger, depression, mood swings – are not, as she thinks, paranoia, but steroid and Addison’s-induced. (And anyway, paranoia is a mental illness needing support not condemnation!)

              And yep – buggering up my sleep too.

              You’re right about BP specs – an antibiotic, mainly used for respiratory infections – Distaclor MR – has a dye that aggravates asthma and causes angina. Put me in hospital twice.

              • I hope your friendship can be mended Ron.

                Hormones are some of the most powerful substances on the planet. I believe that the science of endocrinology is a little akin to letting chimps loose with lump hammers. I don’t think that many people really understand the power hormones have over every second of our lives and also our minds. Think of the jokes about women being “hormonal” – humour as a massive statement of ignorance and a reason to perpetuate prejudice!

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