Friday, 31 August 2012

Specialist Update

Before I moved away from my lovely wonderful GP he wanted to make sure I was on the right path to being treated, to improving. He had tried referring me to a rheumatologist, but it had proved fruitless in terms of treatment for M.E.. So we sought an actual M.E. specialist, and we found a clinic about an hour away from where I was living. The Chronic Fatigue Clinic at the George Eliot hospital in Nuneaton.

I had an appointment with them in March. It upset me. The doctor I saw told me that I had been ill for so long that it was unlikely that there would be anything they could do for me. I came away feeling as if I was being blamed for not being referred to them sooner. I wasn't given any advice or treatment, so didn't think it would go any further.

However, a month or so later I was called in for an adreno-cortisol test. I was under extreme stress at the time, so the doctor conducting the test expected my results to be very strange, and that he would need to repeat the test. I received a letter through the post informing me that they were normal. I was once again disappointed. I know it is strange to hope that something is wrong, but as far as I'm concerned, if there is something wrong they can treat it, which means there are less things wrong with me that are being untreated.

I was then surprised to be called in for a second appointment with one of the doctors from the clinic. The appointment was last Friday. The letter didn't tell me why I was going, so I didn't know what to expect. My appointment was with Dr Patel.

Dr Patel, at the moment, is my hero. He disclosed to my partner and I that when I had gone in for the adreno cortisol tests they had also performed a number of blood tests. He looks at the results of these tests in conjunction with one another. For myself he found that while both my thyroid levels are within the normal range, one is high, and one is low; that in itself is not normal. It means that one thyroid hormone is not being converted properly into the other. As such he has changed my thyroid medication to try and overcome this problem. He also found that my Vitamin B12 levels are low, so he has prescribed B12 injections.

I would like to explain something here. Where I have described on M.E. groups what Dr Patel has so far done, the reaction I have mostly had is "My GP did that ages ago!" or "That's how I was diagnosed too!". I have been ill and diagnosed since 2002; he is not re-diagnosing me. The way he does these blood tests is not what our GPs do. He is not running routine bloods for a start, but also the way he looks at the results is different. Most of our GPs do not go through the results and explain them to us. He looks at how they work together. We all know that different parts of the body affect each other; similarly if one thing is wrong in the blood tests it will be affecting other things. My thyroid levels being the perfect and most simple example. He is also familiar with the fact that people with M.E. have absorption issues, which is why he prescribed Vitamin B12 injections. I am already taking multi-vitamins and minerals at the advice of my previous GP because he suspected I had low B12 and Vitamin D, but obviously I still have low Vitamin B12 despite taking 100% of the recommended daily allowance on a daily basis.

One thing the rheumatologist did do when I saw her was to prescribe me with Tramadol for pain. I have found since seeing her that it doesn't only help me with the pain, but it also takes away that extremely heavy feeling we get in our limbs, and clears my head so that I can actually think clearly. Well, since moving GP, my new doctor keeps reducing the dose of Tramadol. He doesn't like the drug, because it's addictive (and because he didn't prescribe it for me). So I asked Dr Patel if he could sort this problem out for me. He is going to; he has re-prescribed it for me at the dose the rheumatologist set, and is going to ask my current GP not to reduce it again. (I don't think this will have any affect on my GP though to be honest).

I also asked Dr Patel if I might try Gabapentin for sleep, as I've heard from a few people with M.E. that it gives a natural sleep, unlike sleeping tablets which turn us into zombies. He has indeed prescribed me with Gabapentin, and he mentioned that it is recommended for M.E..

I have come away from him very happy. I am determined to do exactly as he has said. I will be sticking to this medication regime religiously. I have absolutely no right to complain about being ill if I am not doing as the doctors who understand the illness tell me to.


  1. Hi.. I am glad that you have had such a positive consultation with Dr Patel and it must be a relief for him to have found something that can be treated. I do hope you continue to improve and ultimately recover.

    My son has not been quite so fortunate through his consultation as his tests came back clear and so Dr Patel sent us on our way with a leaflet and the advice to 'self help.' My son is only 18 and is virtually bed/house bound. He has had this illness quite severely for over 2 years. I feel he should be seeing someone every couple of months while they try to find a way to help him recover or at least manage his illness. His symptoms should be monitored over time to see if they can help him. Dr Patel told us he doesn't like to be considered as holding a CFS clinic as he doesn't have the funding to provide the service. He simply does the blood tests to rule out other illnesses.
    Best wishes

    1. Wow, Barbara, I'm so sorry to hear of this experience. And surprised. When I saw him he was thinking of renaming it a CFS Clinic, he wanted to lose the M.E. part due to disliking the incorrect scientific name ('Chronic Fatigue Syndrome' is even more misleading if you ask me). Yes, Dr Patel found and treated some things for me, but I am by no means 'fixed'. My life is more barable. I had believed that if someone's blood tests came back clear he knew what to do next; this would explain why he only gives people three appointments though.

      I'm sure you are aware that statistically males are more likely to recover from M.E., as are people who develope it when they are young. I hope your son is one of these statistics. Two years isn't 'too long' to give up hope. If he wants help or advice, or you do, you can join us here: