Dr B is a … ?

I’m still not impressed.

Next time I’m taking in my dinner plate. Who knows, maybe a visual presentation might convince this person that I’m not continually stuffing my face. Failing that, I could smash it over his head. The only thing that has stopped me smashing his face in so far is the fact that I’m not particularly keen on acquiring a criminal record.

First off, the spironolactone.  Not a good idea.  In fact so bad that even the long-suffering P asked me to stop taking it and go back on the prednisone, the mood swings were so bad.

But when I started taking both, things actually stabilised – for a while at least.  Long enough for me to have a somewhat ill-fated attempt at actually doing some regular exercise (which is something I haven’t been able to do for over 5 years!).  I did some (very) light weight training, so light that it was little more than 30 minutes targeted muscle movement twice a week, for a month.  Until I started getting mood swings again and my weight started sprinting upwards.   And then even my GP told me to lay off the exercise.

Surely that would indicate something was amiss?  There aren’t many circumstances where gentle exercise would have such a bad effect.  Even depression is supposed to improve with exercise, so why would anyone suggest that I am depressed?  That’s exactly what Dr B suggested – and then wondered why I vehemently disagreed.

I’m finding it very difficult to keep my temper under any semblance of control.

Knee-jerking

Why is it becoming commonplace to make policy on the basis of knee-jerk reactions?

If you buy paracetamol from anywhere other than a pharmacy, you can only buy a couple of packets of 16 tablets – because paracetamol is a commonly-used substance for would-be suicides (especially the ‘cry for help’ attempted suicides) and the liver damage caused to survivors is substantial.

Then co-proxamol was banned, for similar reasons. Those people who were taking co-proxamol at the time were directed to use co-codamol instead for pain relief – despite the fact that some people simply don’t tolerate codeine well (I know I don’t, I was once prescribed codeine and was very ill after the second dose).

Now pseudoephedrine looks likely to go the same way, according to this story from the BBC – although the consultation’s proposals are for a restriction on supply (the consultation suggests restricting sales to small pack sizes available from pharmacies only and an eventual move to making the drug prescription-only rather than effecting an outright ban). This common decongestant is used in a variety of cold and flu products and for me is very effective in treating sinus pain when I get it (fairly frequently) – in fact, for me, it is the only drug that works. BUT it can also be used as an ingredient to make crystal meth (methylamphetamine)

So, because a substance can be used in the manufacture of an illegal drug, it must be bad – and therefore should be banned – or at least sales should be restricted to smaller pack sizes sold only via pharmacies or even further restrictions applied so it is only available on prescription. Yeah, right. Has it made any difference in the USA, Australia or New Zealand, where the sale of pseudoephedrine is already restricted either voluntarily or via state or federal law (in the case of New Zealand, classed as a Class C controlled drug!)? Has it bollocks. Like most other so-called ‘controlled’ drugs, crystal meth production and use/misuse continues to grow out of proportion to the authorities’ attempts to stop it.

Restrictions on the sale of pseudoephedrine will in all likelihood only affect those who use it legitimately. I know phenylephrine is completely ineffective for me and it seems that I am not the only one to doubt its efficacy as a decongestant. Pharmacists at the University of Florida have expressed their doubts in the Journal of Allergy and Clinical Immunology; Professor Ron Eccles of Cardiff University has published this article in the British Journal of Clinical Pharmacology and a meta-analysis in The Annals of Pharmacotherapy also casts doubt on the value of phenylephrine as an effective substitute for pseudoephedrine.

What next? Ban solvents because they can be used in drug manufacture too?

I don’t claim to have any answers for the drugs ‘problems’ in society. It is however blindingly obvious that

1. Some people will become addicted to anything; and
2. Prohibition doesn’t work.

Call me strange, but making policy based on knee-jerk reactions in order to appease self-appointed leaders of vocal, conservative, self-styled ‘moral guardians’ completely misses the point of organisations like the MHRA.

EDIT:   The MHRA published the outcome of the consultation in August 2007.  Among the respondents to the consultation were the Royal Pharmaceutical Society of Great Britain, the Royal College of General Practitioners, the Common Cold centre, various manufacturers and retailers (large multiples as well as independent pharmacists and pharmacies), various pressure groups (whose attitudes were shared between both accepting and refuting the proposal) and individuals.  The proposal to reduce the maximum pack size to a maximum of 720mg pseudoephedrine (12 tablets), with only 1 pack per customer sale, was accepted, as was a proposal to make pseudoephedrine a prescription-only medicine in July 2009 if this measure didn’t have any impact on the crystal meth problem.  Roll on a massive problem with getting GP appointments in Winter 2009/10.

Another day, another doctor

First impression of Dr B? In a comparison with Drs A & J, I am seriously unimpressed.

As anyone who knows me (and quite a few who don’t) are already aware, I don’t like it when I feel my concerns are being ignored. Especially when I’m consulting someone for their professional opinion. Even more so when the clinic is running about 2 hours late.

So, apparently I have Polycystic ovaries. This is news: the ultrasound technician said she only saw 1 cyst and Dr A said in his opinion, the scan was perfectly normal. However, Dr B now says the scan showed my right ovary ‘full of cysts’. Who do I believe?

As for everything else, well, this berk suggested I saw the dietician again. Like that’s going to happen, after last time. Obviously, so far as the medical profession in AnyCity are concerned, successfully completing the OU’s “Studying Human Nutrition” science course is a complete waste of time so far as demonstrating you have any understanding whatsoever about nutrition.

Once again, I asked for the numbers from the various sets of tests. I didn’t ask Dr B to describe the results as ‘normal’ or otherwise, but that is all I got, even after repeating myself. It’s obviously not the hospital trust’s policy to refuse to give out such details to patients, as the Endo investigation unit nurses were quite happy to give out the numbers when I called about the overnight dexamethasone test. So why don’t the doctors respect their patients enough to give them the information they request instead of answering questions that were not asked? That’s the kind of behaviour I expect from a policitian, not someone who’s supposed to be entrusted with caring for my health. I could get the information anyway, simply by asking the hospital for a copy of my records, but at the moment, I’m not really in much of a position to pay for it (Anytown charges something like £5 or £10 per sheet, I doubt AnyCity will charge much less than that), but frankly I don’t see why I should have to do that. If I ask for certain information during a clinic consultation (especially if it is information relevant to that particular clinic!) there’s no need for a doctor to be defensive. Why should it be considered so unusual for a patient to take an interest in the detailed nature of their care?

I have to say, this kind of attitude was outdated decades ago in an era when doctors were trusted without question. These days it is simply indefensible and does nothing positive for long-term care relationships between professionals and their patients.

So, you can guess his response to my self-medication experiment. Despite the positive results it generated (I lost a little weight, my PMS improved immensely and even my head and abdominal pain control improved a bit!). So far as he is concerned, my only endo problem is PCOS (for which he was prepared to prescribe spironolactone for a trial period of 6 months, but only on condition that I stopped taking the 7.5mg prednisone I had imported for myself, despite the improvements to my health I had experienced – and documented – in detail – when I was taking it and despite the temporary improvements I experienced when I had undergone the various other steroid tests).

I get the feeling this is not going to be a good working relationship.

Wassa point?

I’d received an appointment with Dr B after the referral from Dr A. Unfortunately, it was inconvenient, so I attempted to re-arrange it. I called the Anycity outpatient booking centre on 13 April at 2.35pm. The answerphone message stated clearly that if you left your name, hospital number and telephone number, a member of staff would call back so I left a message asking to re-arrange the existing appointment on 19 April.

On 17 April I called back. Nothing had apparently been done with the message.

WHAT WAS THE POINT IN ASKING PATIENTS TO LEAVE A MESSAGE IF NOTHING IS DONE?

Was I unreasonable in expecting a response?

Civilised society?

As a relative newbie to the blogosphere, I was horrified to see this post from Kathy Sierra, via a link from the BBC.

OK, so it’s not exactly unusual to see some really stupid things posted in anger in response to articles or blog posts individuals may consider offensive for personal, political or religious reasons. Most of us are guilty of such behaviour in the heat of the moment – and we often regret posting so hastily.

Bullying – offline or online, is bad enough. I was picked on at school, for no other reason than being a bit of an “odd” kid with hair a different colour than most of the other kids at school, but a lot of redheads tend to have similar experiences (which can sometimes contrast with experience as an adult: a stranger once stopped me when I was out shopping in Bradford city centre one lunchtime and asked where I got my hair coloured, as it looked so natural – and was amazed when I laughed and asked why she thought it wasn’t my natural colour?). And as an adult, one of my employers was a serial bully to anyone who worked in my position (and she wondered why no-one lasted more than six months in that job…)

But posting death threats? That isn’t crossing the line, that’s taking a run up and taking a world record-breaking long jump over it. ‘Anonymous’ or not, death threats are simply never acceptable, no matter how insulted you feel. Kathy, my thoughts are with you. I hope the thoughtless idiots who subjected you to such abusive behaviour are quickly apprehended and prosecuted to whatever extent your state or federal law allows. If they try to use a “freedom of speech” defence, I hope the prosecutor – and the presiding judge – exposes such an attempt as nothing more than bullshit – which it is. And I hope a successful prosecution makes that point crystal clear.

Don’t try this at home

My experience with the NHS suggests I’m likely to have a bit of a wait for my referral to Dr B’s obesity clinic.

So in the meantime, I’ve decided to have another go at the self-medication experiment, but with a slight twist to the treatment schedule. After doing a spot of reading about CAH from a variety of sources, I wondered if the overall lack of success of the previous experiment was the timing of the corticosteroid medication so I’ve decided to take the drugs at night to see if they successfully suppress my natural early morning surge in corticosteroid production.

I’ll be comparing quantitative and qualitative changes with periods in 2004 (when the abdominal pain settled into its current pattern, before I had the first dexamethasone test at Anytown DGH) and 2006 (after I started treatment with Indometacin and before I had any dexamethasone tests at Anycity) as well as comparing treatment with a combination of corticosteroids and my current treatment of Sibutramine & Indometacin and corticosteroids & Indometacin; and I’ll be titrating the dose (between 5mg and 10mg per day) using a combination of waking body temperature, blood pressure, fasting blood glucose and change in weight as well as assessing the qualitative factors (mood, concentration, perception of pain) on a more informal basis.

Pass the PP

Dr A is playing the game of pass the problem patient.

The synacthen test results are ‘normal’ (but of course, he doesn’t give me the numbers.  Even when I fax a written request for them.  TWICE.)  No matter what I say, he won’t consider the positive experiences I have had with the dexamethasone or synacthen tests as anything other than coincidence – apart from stating ‘well, some people do feel better on steroids’ and telling me that as the test results were normal, he can’t (or won’t) prescribe any corticosteroids to see if I continue to feel better.

As the synacthen test appears to rule out CAH as the cause of my condition, he reverts to his old opinion that my excess weight is the cause of my condition rather than a symptom.  It’s at times like this that I wish I had a picture of myself as a student when I wasn’t overweight – and I still had the same strength and stamina problems and the start of some problems with concentration: maybe that would go some way to getting my point across.

We are at an impasse.  The only thing we agree on is that I produce too many adrenal androgens.  Dr A suggests referring me to a colleague (still within the endo department) who runs a specialist obesity clinic and I accept the referral as I don’t believe my search for a diagnosis or effective treatment will get any further with Dr A.

Another early morning

Time for the modified short synacthen test.  As I understand it, ACTH is produced both as a consequence of the body’s natural circadian rhythm and as a response to stress, in both cases prompting the adrenal cortex to produce corticosteroids.  It still doesn’t make me feel any better disposed towards getting up early in the morning to get to the endo investigation unit near Anycity city centre.

With this in mind, I was expecting to experience a fair bit of pain as a result of the synacthen injection. This is supposed to be a simulation of an increase in stress, right?  Wrong.

I was somewhat pleasantly surprised.  In case the Indometacin had an effect on the before and after samples, I’d decided not to take it until after the test, so I went in with my headache starting to kick off and my abdominal pain threatening to join in.  A few minutes after the injection though and the pain had completely disappeared – to the extent that I forgot to take the Indometacin until a few hours later when the next dose was due, and my body temperature was raised to what anyone else would consider normal (it’s usually a little below normal and drops even further during my period, even though I generally appear to radiate enough heat to affect the temperature sensor on P’s alarm clock!)

What’s the betting that these positive effects will be dismissed as coincidence again?

One more test, PP?

OK, so sometimes a multidisciplinary approach can give a new perspective on a problem.  The 5-day dexamethasone test seems to have thrown up some unexpected results and if some miracle occurs, it may require some eating of words by Dr A.

The purpose of the test was finally spelled out – it was an attempt to suppress the adrenal androgens (in much the same way that the overnight test suppresses cortisol production if the adrenal-pituitary feedback is working properly). All but one of the androgens was successfully suppressed (even Androstenedione, which went down from over 23 to less than 1) – this time the miscreant appeared to be 17-hydroxyprogesterone. It would be somewhat premature to bring up Dr A’s previous assertion that my problem was definitely not CAH, but even so, the human pincushion known as PP will be having more blood tests. A modified short synacthen test, to be more precise and back next month for the result.

Mantra mania

This wasn’t the dietician I’d previously seen, she was on maternity leave.

Why do some dieticians assume every patient’s body works in exactly the same way?  If our genetic code has seen fit to give us a different colour hair and eyes and a different adult height, even a different requirement for and response to pain relief, isn’t it reasonable to expect that there will also be variations in the optimum dietary requirements for individuals?

If someone has an unexpected response to a drug like Orlistat, there could be several reasons for it.  It could be an unexpected response to the active ingredient of the drug, or the excipients used in manufacture.  It could be an unexpected response to the drug’s intended or actual actions on the body – in this case the inhibition of absorption of most of the fat consumed in the diet.

So why assume that an adverse response is due to the drug and not the consequences of its actions?  If you accept the premise that your genetic inheritance affects the characteristics your body’s processes, then isn’t it reasonable to accept that the very idea of a ‘one size fits all’ kind of dietary regime will not work for everyone – some people will benefit from Atkins-style diets, others will benefit more from a regimen higher in carbohydrates than proteins.

In which case, why continually repeat the mantra ‘eat less fat‘?  Repeating a mantra does not make it true any more than continually quoting the same piece of religious text to an atheist will convert the atheist to a particular form of religious belief.

I switched off after the fourth time it was repeated.  And declined a follow-up appointment.