Thursday, 6 November 2014

Is This The Key to recovering from my M.E?

Unfortunately I haven't been absent from my blog because I made a miraculous recovery! I have had a couple of setbacks. An old friend of mine, who'd had chronic fatigue had found Chinese herbs very helpful in her recovery so, desperate as ever, I thought it's one of the few things I haven't tried. £100 or so lighter I found myself getting iller, slipping back, and realised it was the herbs. So disappointed as ever I knocked that one on the head and went back to what I had been doing before. By about June this year I was back where I had been before the herbs, able to tolerate being upright for about 1 to 2 hours, needing to rest afterwards for one and half hours, being a bit more human when upright, my symptoms were quite calm, mainly the exhaustion and my adrenaline keeping me pinned to my bed. However my new GP did something that set me back about three years.

Now I have been diagnosed hypothyroid since 1994. Over the years like a lot of hypothyroid patients my need for thyroxine had increased and by the time I hit the m.e wall I was on 175 MCG of thyroxine and 20 MCG of something called liothyronine sodium. I had had a very supportive GP before I moved to Wales and she had put me on liothyronine sodium at my request. The thyroid gland is a very complex part of the body that produces thyroxine otherwise known as T4 and liothyronine otherwise known as T3 along with T2 and T1, and who knows what else! Now the T3 part of that is the active bio-available form that your body is meant to turn T4 into in order to use the thyroxine you are given by the doctor. My new GP in Wales looked at my blood test results and in her infinite wisdom, despite my arguments, despite what an endocrinologist in England had said, despite the fact that changes to thyroid medicine are usually ramped up and down in small steps, she decided to take away all of my T3, and cut my T4 down to only 100 MCG. In effect she had more than halved my dose overnight.

Now all hypothyroid patients don't like their medication being reduced because we never feel like we've ever gone back to the person we were before we were diagnosed, however having M.E I was particularly concerned about this drastic change. Now I expected a re-occurrence of the symptoms I had had when first diagnosed in 1994, basically I thought I'd get fatter, balder, have drier skin and obviously be more tired. I did not for one minute expect what happened.

After a couple of weeks on my new dose I felt an improvement, my adrenaline reduced I was managing to do more, however that only lasted a week. After that week I began to go drastically downhill, symptoms I had not seen for at least a year came back full force, in fact after about six weeks I was almost as ill as I had been when I first hit the wall. Desperate to get my dose increased I went onto the Health Unlocked website to get some advice from other sufferers of hypothyroidism about how to challenge my GP . Many people told me I did not have M.E just badly treated hypothyroidism. To be honest with you I thought they were evangelical nutters, who did not accept the existence of M.E. why did I think this? Because I knew that relatively speaking when I first got M.E I was on high-dose of thyroxine, and I knew that the array of symptoms my M.E produced far exceeded anything I had ever heard of someone suffering when they have an underactive thyroid, lastly, I knew that M.E does exist and is not caused by hypothyroidism because my partner had had M.E for 16 years and had recovered without taking any thyroxine.

Despite my conviction that my M.E was not caused by hypothyroidism I had to admit as my symptoms increased I struggled to understand how this drop in medication could be reproducing my experience of the first year or so of having ME. Symptoms I had even forgotten about returned, so for example my brain fog became so bad I could barely speak; I was freezing cold then boiling hot; my headaches increased and I felt nauseous; my eyes were so tired and itchy it felt like I'd been at an all night party and hadn't been to bed for 24 hours; and my sugar crashing, thrumming and tingling went through the roof. I became increasingly curious about the endocrine system, in particular the thyroid gland and its role in the production of energy in every cell of the human body. The more I opened my mind, the more I read, the more I discovered that people with hypothyroidism shared many of my symptoms, the more convinced I became that even if my hypothyroidism was not the total cause of my M.E I would never make a recovery unless I addressed what was staring me in the face: that either my body could no longer convert T4 to the active T3, or else something was blocking the take up of T3 by the cells of my body. It could not be a coincidence that all my M.E symptoms went through the roof when my medication had been so severely cut, there had to be some sort of correlation!

In my next post I will elaborate on exactly what I have discovered about the relationship between my M.E and hypothyroidism.

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