My last post about thyroid medication concentrated on the main brand of synthetic thyroid hormone that is used in the uk to treat all hypothyroidism patients. Levothyroxine or T4.
For me, as with my thousands of other people. it just does not work. We are left still feeling ill, under the weather, never quite right ever again. Yet we soldier on thinking that we are being treated with the best possible medicine and the best knowledge possible. The truth is that thyroid treatment in Victorian days was actually far superior to now! They treated on symptoms and not on blood tests, which by the way are of little use. Why? Because they only measure the thyroid hormones in your blood and not in your cells where it needs to be, to be active in your body.
So last June I was given the chance to come off T4 as I found that not only was it not working for me, it was actually poisoning me.
September 2011 I became thyrotoxic. I had all this unused T4 in my blood stream with nowhere to go.
I became agitated, anxious, in even more pain than before, shaking, weepy. Totally exhausted and ready to throw in the towel. It happened because looking at blood tests and hearing me say ‘ it’s just not working’, then my dose was upped and upped and upped.
It took till May 2012 before I got to see an endocrinologist! Fortunately I was lucky, it was one who would listen to me and not just my blood tests.
And so the trial on T3 commenced.
You have to wait nearly 8 weeks before T4 is out of your system and after week 4 I no longer felt poisoned.
The down side was that all my other symptoms remained and I still had no energy.
The T3 dose was 10mcg and I got permission to increase this slowly up to 40mcg.
Some minor improvements in pain relief and clarity though no improvement on energy.
Then hit me with a stressful situation and I’m back at base station again……
So November 2012 and another visit to an endochrinologist. This one wants to take me off T3 completely, till I explain it will make me housebound again! I’m back on T4. With a lot of trepidation but it’s a small dose 12.5mcg a day, raising it to 25mcg if no side effects. I raised it but have no benefits either. It does feel like it is a bit of stability that I need as a base and that the T3 is what is going to work for me.
I want to be positive and yet going back to my old job, running a dance business and just having a normal life still seem a very long dream to have. I can look forward now to other options such as my love of being out doors, maybe I can get a job as a traffic warden when I’m strong enough! 🙂 Maybe not, so how about a dog walker along the beach each day, will have to be small dogs though till I get some strength back. As I say a distant dream but great to start to feel I can have them and a new reality…..
Long way to go and I’ll carry on with my meditation till then.
So even if you don’t think you have a thyroid problem but you are CFS/ME then do think about checking this out.
No thyroid problem at all, then still get some supplements down you to support your thyroid and your adrenals.
Ashwaghanda Root extract Total of 400mg
Vitamin C 1000mg
Mega Vitamin B -100
Co-enzyme Q10 -30, I take two a day
Vitamin D3 depending on the weather between 1000iu and 10,000iu a day
Then specifically for my adrenal glands and via Dr Peatfield
DHEA 25mg – 2 a day
Nutri Adrenal extra – up to 4 a day
Also through Dr Peatfield and before I got T3 on the NHS
Cynomel 25mcg – via Mexico – I started at 10mcg a day and went up to 50mcg when I felt back to about 90% of me!
Hope this helps to keep you well or get you better.