Deja vu

I’ve been here before.  Why do doctors repeatedly dismiss the opinions, observations and experience of patients, when subsequent evidence indicates the patient had a point in the first place?  For people working in a ’scientific’ discipline, I find it very strange that some of them seem remarkably incapable of learning from past experience.

Take the latest follow-up with Dr E.  I’d previously said that I was convinced that Orlistat made my condition worse.  Yet he asked me to take a break between stopping Orlistat and starting with Sibutramine in case the sudden worsening of my condition was coincidental.  That would have been some coincidence – what are the odds?

That said, I’m still finding it difficult to convince Dr A that my condition is anything other than an inappropriately sensitive and inappropriately excessive response to physical or mental stress.

For the record, my head and abdominal pain very quickly reverted to previous patterns after ceasing treatment with Orlistat, but the psoriasis has only improved very slightly.  Our house got a white Christmas when I went outside and shook my head on the doorstep, so Dr E is referring me to Anytown’s dermatologists.  I’ve been there before, so I’ll be on the lookout for the furtive-looking teenagers huddled outside the building (it shares a building with the Genito-urinary medicine clinic, which is very unfortunate for kids with eczema!)

Curious question

I had a curious conversation with Dr E.  Apart from agreeing to halt the disaster known as taking Orlistat for a month, that is.  After a month of much worse abdominal pain, horrible headaches, an explosion of psoriasis – which has now found new sites on which to plan its snow-making equipment – and worst of all, I ACTUALLY PUT WEIGHT ON WHEN TAKING THE DAMN STUFF! – I’ve agreed to take a couple of weeks break (to confirm to Dr E that the increased pain and sudden worsening of psoriasis are drug- not condition- related, although I’m already convinced) and then give Sibutramine a go.  I have never been convinced of the value of drugs to modify the body’s processing of macronutrients (Orlistat) or appetite (Sibutramine), but I’m still reasonably convinced that Dr A’s attitude of ‘wait-and-see’ (aka do nothing) isn’t doing anything other than wasting my time and his.  The oath may say ‘do no harm’ but sometimes I have to wonder if doing nothing can be harmful in itself, but that’s a philosophical question for another time.

Dr E suggested I should be less focussed on trying to get a diagnosis – and focus more on learning to cope with my symptoms.

While I can understand his point – that a label doesn’t in itself make you feel better, and a fruitless search for such a label can in itself be counter-productive – I have to firmly disagree. Even if an eventual diagnosis is something vague or untreatable/incurable (say Chronic Fatigue Syndrome – reference 1/reference 2), a diagnosis/label can be helpful in more ways than simply identifying an underlying reason for feeling rotten.

Dealing with the DWP, for example. The form used for reviewing Incapacity Benefit claims are designed for people who know what is wrong with them, how it has affected them in the past, how it is being treated and how it can be expected to affect them in the short/medium/long term. In a system where this information is used constructively it should/could help identify any support an individual may need to help them get back into earning a living for themselves. Sadly though, Incapacity Benefit claimants tend to be seen as an easy target, like single mothers, so I have a feeling the information is more likely to be used as some form of coercion rather than support. Without a label though, the only thing it is possible to do is describe at length the symptoms, investigations and treatment I receive. Is it useful?

Then there is access to other forms of support outside that offered by a GP or hospital consultant. Various support groups exist on the ‘net, with varying degrees of support available to sufferers of particular conditions, their families, friends and carers. Some offer information on the latest research into investigations and treatments, others offer a discussion forum or counselling. It’s not easy to break into those cliques without a label though – and in some respects I think it shows a huge lack of respect for other participants to blunder in wildly without respecting the netiquette of such groups.

Tight gits

So – even though the prescription is written at the request of the dietician, it appears that even the first prescription for Orlistat is written by my GP.  Is Anycity one of the NHS trusts trying to save money on its drugs bill by passing on the cost to the patient’s GP?

I’ve agreed to try Orlistat, but only because it is some form of treatment and I don’t think the ‘wait-and-see’/do nothing approach is doing anything to address either the symptoms or the cause of my condition. I remain unconvinced about its usefulness though, but I had similar feelings about acupuncture before I tried it.

QoF off!

I had a letter from my GP practice, asking me to make an appointment to see the diabetes nurse specialist. She’s also the practice asthma specialist – and she does flu jabs and smear tests. More of a general practice nurse then.

“We’ve had a letter from Dr A”, she says. “About your diabetes diagnosis…”

I told her to stop right there. This was a knee jerk reaction to the Oral Glucose Tolerance Test back in April. It is now October. Things have moved on from then. For a start off, the misleading results of the OGTT were a result of me forgetting not to take my Indometacin dose before the test. And a further fasting glucose test at AnyCity hospital in July had shown I was definitely not diabetic – and Dr A finally agreed that my account of the action of Indometacin was right in this case. Plus, I monitor my fasting glucose every morning anyway. OK, so the QoF matrix means the practice will get money from calling me in to discuss my ‘treatment’ under this ‘diagnosis’, but in the meantime they have received further information from Dr A to make this unnecessary. Dock a few points for that one Mrs Hewitt!

Besides, from that one appointment they would have had a fair few QoF points anyway. A smear test (I’d recently had a reminder that one was due), an asthma review (comments that my peak flow was down, well, breathing out sharply is more than enough physical stress for my abdominal pain to kick off – as it should have been recorded in my notes on several occasions – and I prefer not to go looking for reasons to be painful) and finally the ‘flu jab. For once my timing was superb – and I got the first one from the box delivered that morning.

five days

Well, the multidisciplinary approach came up with an idea: a five-day dexamethasone suppression test.  I’ve heard of overnight tests (low and high dose) and two-day suppression tests, but not five days.  Still, it was an opportunity to see if taking long-acting steroids would be helpful for my ever-worsening PMS (the results were a bit contradictory – my head pain improved a bit but the abdominal pain became a bit unpredictable, fasting blood glucose went haywire, my PMS emotional state was gloriously psychotic, my psoriasis seemed to improve a bit and instead of putting on my usual PMS weight gain of 1kg, I lost 1/2 kg!)

Optimism bitten on the bum

I really should learn by now.  Getting optimistic about medical stuff isn’t a good idea for me.  According to Dr A, all the scans were OK and there was nothing out of the ordinary in the dexamethasone test, although being picky, I don’t like it when people won’t give me the numbers (for my own future reference).  Yes I know, I’m sad but I’m an ex-management accountant and I’m comfortable with numbers!

The good news: I won the argument about the Indometacin effect on my fasting glucose  sample.  So we finally both agree I am not diabetic.  But, the adrenal androgens remain pretty high – the androstenedione is getting higher – with no apparently obvious reason jumping out.  That is obviously a source of concern (even if it isn’t, it should be), as Dr A asked for my consent to present my case to the multidisciplinary team to ask for further suggestions.  (If I was feeling less than charitable, I’d suggest this was more a case of wanting to appear to be doing something other than giving up on me).  My suggestion of CAH or a possibly pituitary connection are still dismissed. In the meantime, I had another set of blood samples taken while at Anycity to keep an eye on the androgen levels – even if Dr A can’t suggest any reason why they might be so high apart from my weight being the cause.  I’ll concede that my weight is certainly not helping matters, but given that a lot of the problems I have were present well before weight was a big issue, I still find it very difficult to consider the weight issue as anything other than a symptom in its own right.  Despite my misgivings about medication for weight loss, though, I’ve reluctantly agreed to accept a referral back to the dietician to be prescribed Orlistat for a trial period.  I’ve a feeling that might be a decision I’ll come to regret.

Moving on, I brought up the head pain again. I’m still not 100% convinced that this is simply coincidental, especially now the head pain seems to be settling into a similar stress-related pattern as the abdominal pain. As per usual, my concerns were dismissed as coindicence and Dr A suggested that if I was really that bothered, I should ask my GP to refer me back for a second neurological opinion as the team would not accept a non-urgent referral from another speciality within the trust.

Back in January once the weight loss drugs have a chance to work. Even my optimistic side isn’t remotely convinced.

Squelch

After a couple of phone calls, I’ve eventually got the ultrasound appointment.

As it’s done in the morning and I’m not allowed breakfast, it’s a good opportunity to have the fasting glucose sample done to settle the Indometacin/glucose argument.  My own monitor shows a level of 4.6 mmol/l, so I think I won on this occasion.

As for the scan itself, well. It certainly wasn’t as bad as some smear tests I’ve had (having cold stainless steel shoved inside my nether regions is never likely to be one of my favourite experiences), but the ultrasound probe looked a bit too much like a vaguely odd-shaped control device for a video console for my mental comfort.  According to the technician, she found a single small cyst.  Hardly POLY-cystic then.

CT-tastic

So, the dexamethasone test is out of the way and I don’t yet have an appointment for the ultrasound.

Today’s the turn of the CT. Obviously the radiology guy at Anytown really doesn’t like me, because this experience was far more pleasant – and much less time-consuming – than the MRI. OK, so there was more radiation involved but so what – I grew up within commuting distance of Sellafield, so the nuclear physics option at physics ‘A’ level wasn’t so much an option as a compulsory part of the curriculum.

First Results from AnyCity

The first results from the Anycity tests are in. As well as the raised androgens, the OGTT came back with a positive diagnosis for diabetes, both from the fasting sample and the +2 hour sample. Not exactly startling news (as usual, I took my own monitor along and did finger-prick tests minutes after the hospital nurse took her samples) – but misleading. In this case, entirely my fault: I forgot to not take my Indometacin dose that morning, so I knew both samples would be a lot higher than they should be. Dr A clearly didn’t believe my assertion (based on experience) that Indometacin would have quite such an effect on my glucose levels – and asked me to have another fasting sample done at Anycity before he would be convinced.

As well as the dexamethasone test, Dr A is requesting a CT scan of the adrenals and an ultrasound of the ovaries, to rule out tumours, although he still seems a bit fond of suggesting PCOS as a cause. I admit to some concern about this – PCOS may well be a plausible, and a commoner cause of my symptoms than other conditions, like CAH (my suggestion of CAH was tersely dismissed), but I have misgivings on the practice of ruling things out at this relatively early (IMO) stage.  And he asked me to have another sample taken to keep an eye on the androstenedione levels, even if he can’t explain them yet.
As for the dietician’s letter about my appointment – it sounded nothing like the discussion I thought I’d had! But so long as I’m not coerced into taking diet drugs, I’ll let this one go. For now.

The next appointment is being left open to allow time for the dexamethasone test, CT and ultrasound.

Odd package

Receiving an unsolicited jiffy bag in the post can be somewhat disconcerting. Especially when it rattles.

Fortunately, so far as I’m aware I’m not the target of some of the more extreme animal rights activists, I don’t think al-Quaeda has started indiscriminately sending dodgy packages to suburban houses and the Anycity trust postmark is a dead giveaway, so opening it I find a letter and a small bottle containing two pills. Deja vu, I’m being asked to have another Dexamethasone suppression test.

I’m not sure though if this is a consequence of the first set of tests I had at Anycity or if this should have been done around the same time, so a quick phone call to the endocrinology investigation unit sorts it out. The nurse in the Anytown opthalmology clinic had a point when she was asking about my testosterone results. According to the Anycity tests, most of the adrenal androgens were outside the upper end of the reference range, but androstenedione was highest, almost twice the upper end of the reference range for a woman! Hence the invitation for an overnight dexamethasone test (past experience tells me I should expect some changes to pain control and my menstrual cycle should snap back into a normal routine for a couple of months). The fact that the nurse was happy to give me the results (and the numbers!) over the phone rather than demand I discuss them with the consultant is a nice change from past experience at Anytown and suggests this lot treat patients more as individuals than as idiots incapable of understanding results without a consultant’s interpretation (if he is prepared to offer one). It gives me a little more confidence in the way that Anycity treats its patients compared to Anytown.