Wednesday, 17 July 2013

One step forward, two steps back.

In 2010 I was still a patient under Dr Niklaus. His search for an M.E. specialist in our area had proved to be fruitless. As such he suggested I contact the M.E. Association to enquire as to whether they could recommend a clinic in our vicinity; then he would refer me privately. We were advised that The Fatigue Clinic (also the Diabetes Clinic) at the George Eliot Hospital in Nuneaton was the nearest well referenced specialist that would suit me. As such, Dr Niklaus made this referral.

Part of the reason that my GP wished to refer me privately was because we knew I would not remain under his care for much longer. I was in the process of getting divorced, and the house I had lived in for the last eight years was up for sale. Once it sold, the reality was that I would no longer live in the area as I could not afford to do so on my own. So, we were a little perplexed when eight months later we still had not received any word from the clinic at all. Dr Niklaus chased up the appointment and found that I'd been placed on their NHS waiting list. The waiting list was amazingly long, because Dr Patel is very popular, but this did at least mean that I wouldn't have to pay for the appointment.

Eventually I had my first appointment with them in March of 2012. The doctor I saw was newly qualified. She had not heard of M.E., and told me that I had been ill for too long; that there was nothing she would be able to do to help me. I was absolutely gutted; I'd spent the last year hoping that they would be able to help, and the result seemed to be that I'd wasted a lot of time.

I was therefore rather surprised when I was called in to the hospital a few weeks later for adreno-cortisol tests. I explained to the doctor performing the test that I had lost a pregnancy a few days previously, so the test results may be a little wonky.

I had half expected this test to show something. I had previously asked Dr Niklaus if we could look into Adreno-Fatigue Syndrome, but we never actually got around to doing so.

Three months later I had another appointment with the clinic. This is when I met Dr Patel for the first time; my specialist. He has an amazing manner. He's humorous, and related to me very easily. He discussed the findings with me and my partner in terms that we both understood with ease. The adreno-cortisol had not found any adrenalin related problems. However, when they did the test they used the blood sample to run further tests. These tests had given some results.

Firstly, my Vitamin B levels were low.

Secondly, my thyroid hormone conversion does not work efficiently. Hypothyroidism and hyperthyroidism are common illnesses that most people have heard of. I've been treated for Hypothyroidism for years, as my T4 levels are always low. The tests that Dr Patel's clinic ran showed that despite raising my T4 levels artificially, my T3 levels were still low. Our bodies create T3 by converting T4 into it. My body does not do this properly. It is a less common problem. The treatment for it is a drug called Liothyronine. Only specialists can prescribe this. With good reason.

I was supposed to see Dr Patel again three months later, taking with me results from another batch of blood tests that would assess how well the Liothyronine (and Vitamin B injections) was doing.

For the first few weeks on Liothyronine I felt on top of the world. It was amazing; as if my body had been starving for this drug all my life. I started fantasising about getting my life back on track, building a career, having hobbies etc. I was brought back to earth with a bump, when I started to feel quite ill. I just assumed that it was an M.E. relapse. It replicated it in almost every way. I was sensitive to sound and light. Every movement I made, made me feel seasick. I ended up lying on the bedroom floor for days, feeling too unwell to move, eat .. anything.

I don't remember how, but I got myself to the surgery to have the blood test in preparation for the specialists appointment. A day or two later my GP phoned me. The lab had contacted him as a matter of urgency; my blood sample had showed extremely toxic levels of T3. I'd been poisoned. This certainly explained why I'd been feeling ill. I stopped taking the Liothyronine straight away, but it took a while for me to recover.

As such, I was not well enough to get to the next specialist appointment and had to reschedule.

Please note: I do not blame Dr Patel for the Liothyronine overdose. The blood sample that lead to his prescription of this medication was taken when my body was in a state of utter turmoil; when a body loses a pregnancy all sorts of things happen to the endocrine system. It was not Dr Patel who performed the adreno-cortisol test. I think the doctor who did, forgot to write on my notes the circumstances. As such Dr Patel was unaware.

I've just had the rescheduled appointment with the clinic; a year after my last appointment. I am, once again, a little less than impressed.

As with most hospital appointments I was called in to an office to have my blood pressure and weight taken. I explained to the nurse that she needed to take my blood pressure standing up as well as sitting down because I suffer with Orthostatic Intolerance. She ignored me, only taking it when I was seated.

We were then called in to a doctor's office. I was confused. The doctor didn't look at all as I remembered Dr Patel. And his manner was significantly different. It wasn't until my partner said to him "We were expecting to see Dr Patel" that it clicked. He introduced himself as Dr Nair. (And for the record, they look nothing alike; it's simply that I was struggling with brainfog at the time). He sat and stared at us for what felt like an age, eventually asking us what we wanted from him. I didn't know what to say. I was totally confused. As far as I was concerned I was supposed to be seeing Dr Patel; a specialist who was familiar with my case.

You see, when I left the area I had been living in, under Dr Niklaus's care, I was fortunate enough to fall under the care of an absolutely fantastic GP. My current GP personally knows Dr Patel. As such my case has been discussed a little during private functions. I had actually been really looking forward to making breakthroughs with Dr Patel and my GP. My GP and I had discussed at some length what I should discuss with Dr Patel, and what to ask of him.

Dr Patel had prescribed Gabapentin for me, at night, because my daytime medication, Tramadol, keeps me awake. For about six months it worked really well, but it's effect has been wearing off over the last few months. As such we wished to suggest that I move to a low dose of Amitryptiline. I explained this to Dr Nair. He nodded and said he'd write me a prescription for it, and scribbled some notes.

A Sexual Health clinic had suggested that I see an endocrinologist because of a totally unrelated problem. My GP explained to me that Dr Patel is an endocrinologist, so when I see him, to raise this issue, asking him to test my progesterone and oestrogen levels. So, obviously, I asked Dr Nair for these tests. He nodded, scribbled some notes, and gave me a slip to take to the hospital's phlebotomy laboratory to have some blood taken.

He had absolutely no idea of my history, asking me to tell him. When I explained what had happened with the Liothyronine he smirked and said to me patronisingly "So you feel you were poisoned!" whilst scribbling some notes. This riled me. No! I did not FEEL I had been poisoned. My blood tests had showed toxic levels of hormone. I had actually personally thought I was just having an M.E. relapse. He's the perfect example of a doctor who simply doesn't take what patients say seriously, assuming that he automatically knows better.

My partner and I left his office and sat down outside. We were asked by one of the staff why we'd sat down, so we explained that we were waiting for the prescription, and asked what to do with the blood test slip. He should have given me the prescription for Amitryptiline while I was in the appointment with him. And of course, the hospital phlebotomy clinic had closed for the day; the blood slip he'd given us, only being usable in the hospital. Not only that, but he'd only requested T3 and T4 levels to be taken. There was no suggestion of Progesterone and Oestrogen.

One of the nurses who had been behind the desk took the blood sample for us; the first time she'd done so for months, or years, she told us. (I hardly felt it, however). My partner was absolutely livid. He demanded that we see Dr Patel, since I'd been waiting a year for this follow up appointment, which had ended up being a total waste of time. He'd had to take time off work to take me to the appointment. Unfortunately though, Dr Patel had rounds after clinic; and still had a queue to get through before clinic would be finished. There was simply no way that we could see him.

Today I saw my GP. He wasn't particularly pleased that I'd not seen Dr Patel either. He's heard of Dr Nair, but nothing good. At the moment I'm uncertain of whether to make a complaint against Dr Nair. I don't wish to complain against the clinic, because I value Dr Patel's treatment too highly; though I do think it out of order for the nurse to ignore me when I tell her I suffer from OI, and for us to be sent in to see a different doctor without any warning. But when someone has waited a year for an appointment, and ten years to see a specialist on their condition, to be treated the way that Dr Nair treated me is totally unreasonable. Because of Dr Nair, I went a week without pain medication; which, as you can imagine, was an arduous experience. I would prefer for another doctor, with a similar approach to Dr Patel's, to take his place. With two doctors in the clinic whom people desire to see equally, those waiting lists would hopefully reduce.

So anyway, once again, I'm waiting to see Dr Patel. And my poor GP is trying to tweak my medication with me while we wait.

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