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Thread: Desperate for advice pls - a rather unusual case with suffering from ME/CFS!

  
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    Cry Desperate for advice pls - a rather unusual case with suffering from ME/CFS!

    Hi everyone. A very brief description of my illness: I have suffered with ME/CFS for the past 25 years. 16 years ago, a Guys Hospital Professor suggested I start on levothyroxine as my basal temperature had been consistently low - BLOODS HAVE ALWAYS BEEN "NORMAL"! It took a good year to get my dose right (temperature came up to normal) and lots of my ME/CFS symptoms were kept under control. I've happily been taking 100mg of thyroxine for all these years. However, my GP has decided that as I'm not showing underactive on my bloods (and never have), he doesn't see the point in me having thyroxine. He thinks I'm taking it to get free prescriptions!!!! To cut a long story short, he has now refusing to give me this medicine which I swear is helping me! He reduced me from 100mg to 75mg 4 weeks ago and already I'm feeling quite ill. Constant headaches, aches and pains - which could be the ME/CFS - blurred vision again, cold, grumpy and generally grotty. My basal temperatures are ranging between 35.2 and 36.2 which I know is lower than it should be.

    I've argued with my GP til I'm blue in the face and he told me to buy my thyroxine off the internet because he couldn't legally prescribe it! I'm so disappointed and worried now my symptoms are worsening. I've explained that he doesn't know what ME/CFS feels like, but to no avail. (Incidentally, I've been having vit B12 shots monthly - he's also stopped these as he sees no benefit, although I certainly do).

    Can anyone advise me what to do? Next month my thyroxine will be reduced to 50mg for 2 months and then to 25mg and then to zilch. My doctor won't listen to me and he's the partner of the practice too, so no-one else I can see at GPs. I've asked to be referred to specialist, but Dr refuses as he says its a waste of money! Brain fog is horrendous again - I struggle everyday with ME/CFS and as I say, I was able to manage my symptoms. Now, however, with thyroxine coming down, I'm rapidly skiing downhill.

    Sorry to just jump into forum and sound off, but I'm desperate to stop the spiral downwards to being bed bound again. I know the NICE guidelines for ME/CFS say DO NOT use thyroxine so perhaps this is why GP is being like he is. (Incidentally, I've seen the NICE specialists at Kings who told me my illness was all in my head - ME/CFS doesn't exist!). for reading and hope you can help.

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    What a complete shit of a dr!!! Isn't there another surgery you could go to where you live? I certainly wouldn't want to stay with a dr like that. I've been very lucky at my surgery as they always listen and are happy to give things a go, I don't know if it's because nearly all the drs are women though. I would try and find another dr, just because in general it doesn't work for others doesn't mean you shouldn't take it, it's obviously helped you and isn't that the important thing?! Would it be possible to pay for it so you can say to him 'look it's not about free prescriptions!!'

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    Morning @Loo44 and what a nightmare that is. I feel so sorry for you.


    Why don't your change your doctor or GP, do you have anyone else around your postcode? Now a days doctors are more commerically focused so they dont really care about your health at all. If test results how normal then any mean and commercially focused doctor will take the opportunity to cut down your medication.


    The best thing could be to ask for the test results and see yourself how far are you in the range and then we may have a chance of fighting with them to keep your dosage as it is.


    I sincerely hope you get somewhere with this otherwise you will feel very unwell again.

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    Thank you Mrs E - I could try another surgery, but the new Dr might have the same viewpoint as my present unsympathetic GP, so it would be a lot of hassle to change surgeries just to be told "no" again! I will ask him for a private prescription and see what he says to that. xx

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    Mike - I have a lot of my test results, but don't understand them. Lots of T3 T4 TSH's etc. May consider self medicating and buying from internet as I can feel my energy levels sliding already. Don't think I have the power to argue with GP and win! for help and advice x

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    @Loo44 What were your last two test results FT3, FT4 and TSH? and their dates? Perhaps we could try interpreting those.

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    Hi there - it sounds like some information has been lost somewhere. Perhaps you need to see the doctor (or clinic) who prescribed it so they can prescribe it again and notify GP.

 

 

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