Taking control of MY illness

Hi guys. This is my first ever blog so please be gentle ;-) .

I recently decided I had had enough of giving doctors control over my illness and that I was going to take charge of it myself. To that end I have had a full thyroid blood count done through Genova Diagnostics. I am also sending off for the Thyroid UK pack from which I will select a Specialist to examine the test results. I will only do this however after I have allowed my own GP to look at them and given them a chance to help me in my quest to return to health.

I will put regular updates here in the hope that some of the things I discover might prove useful to others.

Bye for now.

11 Replies

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  • Good on you but isn't it shocking that that is what one has to do these days if you have symptoms that the GP cannot help you with. I am so glad I did not listen to the GP that told me there was nothing that could be done to help me. Absolute rubbish and thankfully I did not listen to him. I don't actually have a thyroid problem myself but M.E. but I am involved in helping lots of people who have got thyroid problems and of course Thyroid UK have been brilliant with the support they give people I send to their site.

  • tell us more, what have your symptoms been and your nhs blood test results? finding a good GP is key but not easy. I hope that you will find some answers, where abouts in the UK are you?

    Jude, how have you been able to help your symptoms? there seem to be many people with ME/CFS/Fibromyalgia that are actually hypothyroid, how do you know for sure that you have ME? just interested

  • The worst symptoms over the years have been the total lack of energy and unclear thinking. I have changed GP twice and seen an endo who told me that my thyroid anti-bodies were higher than normal but didn't think we needed to do anything about it! My TSH has gone up and down like an essex girls knickers! In the last year and a half despite keeping myself quite active i have put one over a stone in weight and feel as bad as I ever have.

    Thats why it's time to take control myself and I will do whatever it takes to sort myself out. After all, you only live once (bond was wrong!)

    <b>Updated on Jul 7 2010 6:22PM:</b> BTW I'm in the north east

  • Hi there,

    Good for you. I have just arranged for the T3 blood test through Lab21 in Cambridge they even put in a list of places that will draw blood if your GP won't.

    It is a shame that we are so held to ransom by the NHS - but if we all stick together and support with advice we can get there some day.

    Good luck and keep us posted.

    S

  • Hi,

    I'm in a very similar situation to yours, been through I don't know how many blood tests, on anti depressants for 7 months as 'could be ME' - it wasn't. Oh to wake up one morning & have some energy, grey matter that behaves & a memory that realises what it's function's meant to be !! One day................

    Just wanted to wish you luck & will follow your posts with interest,

    Regards

    Cath

  • Good for you taking control. I haven't had the strength to take on my GP Practice - yet! But I am getting there. I was only diagnosed in October last year and it has been a complete rollercoaster ride. The worst part is my body has just gone into complete meltdown and I am currently under an ENT for a enlarged Lymph Gland, more antibiotics than you can shale a stick at, plus the thyroxine, vitamin supplements, steroid drops etc. I seem to think if they would only give me the T3 test all my other ailments would go away but I've been refused 3 times now. I will get there! :)

  • I thought I had ME, too. I had a baby Jan 2009 and blamed a lot of my symptoms on post-baby recovery. I deduced that it was normal to feel ragged and depleted after a baby. So I let it trundle on :-( while my body 'calcified', as I put it. That's how I felt - calcified. My tendons felt like they had no elasticity, like pieces of bark. My midwife was hopeless and when she booked me in, I told her of my low thyroid disease, she told me I should 'be alright' and did nothing. I finally got a better midwife at 7 months pregnant who immediately referred me to an endochrinologist who merely upped my dose from 75mics to 100mics until I had baby.

  • I'm far from being an expert on this but there are a few things I have done that anyone can do to help themselves a little. Drink pure water (not just water from britta filter etc, you need water without any flouride in it). I have just ordered a water distilation system for the house. After just a week on pure water you can tell the difference! Don't drink tea (it's grown in soil high in flouride!) and don't drink hot drinks just before or after a meal. The hot drink destroys the good bacteria in your gut! All this can help your absorbtion of nutrients a little (no major changes but lots of little ones soon add up!) And the best advice I can give comes from that well known philosopher Monty of the Python," always look on the bright side of life!".

  • I will follow you with great interest, I am fighting on behalf of my 21 yr old daughter or should I say 21 yr old Zombie. Just returned from the GP & daughter given anti-depressants; very upset as GP even stated the blood results show the adrenal gland results are haywire whatever that means. Why is it such an uphill struggle, I feel like crying but I won't?

  • Quote from thegymguy:

    "Updated on Jul 7 2010 6:22PM: BTW I'm in the north east"

    Hi, I've just spotted your update - I'm in the north east too. I've PM'd you with the name of a local NHS endocrinologist who might be able to help you. I've run a support group for TUK for 6 years now & have quite a bit of local info so just ask if you need any more local help.

  • I wish you the best of luck with this. I am also doing the same thing and getting the tests done at Genova aswell. I am also hoping to have an appointment with Dr Durrant Peatfield when he comes to our area.

    The other thing I'm doing is having two root canals removed as my illness started straight after they were placed. I just got more and more sick over the last year until I could no longer walk. Now after research I have found that root canals are absolutely terrible they contain gangrene each and every one along with a whole host of other nasty things. I am seeing two Hal Huggins trained biological dentists in Bristol. They are amazing and are more knowledgeable about the body (and tyroid disorders) then any doctors I have met in my life. They ran a whole host of blood tests, Along with the thyroid being knocked out I also have raised white blood cells and enlarged red blood cells ie. my immune system is seriously challenged. Durrant-Peatfield sends his patients to these dentists as it is impossible to recover when the immune system is so challenged by what dentists put in people's mouths. Some people are so ill from having root canals that they have to be carried into the dentists surgery. The good news is that these people make fantastic recoveries once the poisons are removed from their bodies. People tend to underestimate the effect that teeth and mouths have on our health especially dentists who generally have no real knowledge of how the body works. They tend to think teeth are just wooden pegs stuck in the jaw and don't realise that teeth are connected to the same blood supply, nerves and immune system as the rest of the body (and emotions!)

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