Trying to get rid of the madness

Been passed about for along time now fiagnosed with cfs 11 yrs ago .been up and down all thst time now very unwell again .digestion problems bowel problems low mood very tired sleep .im asleep for 10 hrs aday extreme pains in joints hradaches low weight miserable lol☺cry alot this is a horror story im not this person you see but have been .

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  • Welcome to the forum, Magic. But sorry you need to be here!

    Do you have any labs to share with us - with the ranges - so that we can get a better idea of what's going on?

    CFS is a syndrome, not a disease. A syndrome is a bunch of symptoms. Symptoms are caused by something - thyroid problems, adrenal problems, nutritional deficiencies... And it is your doctor's job to find out what is causing them. It's a lazy-doctor diagnosis.

    So, post your labs, and let us see if we can find out what your doctor didn't bother to look for! :)

  • I havent got any any more gg 😊im trying to get them done but they arent i terested ive joined here to help myself a bit more ive been through so much .they cant even get my gut right ill try to see what i can do and get you anything but im going around in circles and today all my pain came back the stomsch pain is always there but im sure its all connected .my lazy dr cost me alot of money years ago they all have i had to give up work on ill health then .ty for being there it does help thyroid uk helped me before.im so tired now they prnounced me as unithyroid so dr myhill could treat me with levo and then armour .i guess ive been down the cfs road too long .ive had pernicious anemia sepsis after a fecal transplant parasites horrid stuff thanks i may have found where i need to be 👍magic777

  • Could you possibly get private tests done? If you look on the main page of TUK, you will find information about private testing with Blue Horizon. There is a +11 finger-prick test (I believe) that will give you all the tests you need. Without the involvement of your doctor.

  • thyroiduk.org.uk/tuk/testin...

    I agree with the advice given to you by greygoose ..... Then report back here in a new post and people will help you to start on your road to wellness. No need to suffer any longer.

  • Hi been to the drs are just going to do a tsh next week yes i can get privatr tests done ill give it a go fo you think i need anything else or is that it ill give them a call im on iodine thsts whst i need to know will it affect the test thanks for your helpall of you

  • Well, that could be making you worse for a start! Supplementary iodine really is not recommended for hypos. Especially if they have Hashi's. Come to that, supplementing iodine should never be undertaken by anybody without prior testing and the guidance of an expert - and I don't know where you'll find one of those!

    Not all thyroid problems are caused by low iodine. There are many, many possible causes. And taking iodine when you don't need it can do much more harm than good.

  • Hi Magic777,

    We sound pretty similar..diagnosed cfs/me/fibromyalgia, adrenal, mobility, gastro problems to name a few, four years ago and with many symptoms over and above diagnosis (cfs specialist kindly pointed out the obvious & sent me on my way lol). So I believe purely lazy diagnosis. My normal life is no longer with problems on daily basis. Also ill health'd out of work 😢.

    Since then discovered having just half a thyroid gland (atrophied but no surgery) and micro pituitary adenoma ( Endocrinologist reported 'thinks functioning normally'... just thinks tut!!

    My gp is good and continues to test as things go on but honestly other Dr's try there best to put everything down to cfs,....lazy.

    I have regular nuclear iodine thyroid scans. Most recent reported iodine uptake of 1.6% as normal but I've read normal is minimum of 10% uptake.

    So I'm off to demand a referral to a thyroid specialist (not a Endocrinologist for Diabetes etc as offered). I'd bet my thyroid is cause.

    My point is Magic (getting to point at lost lol), put pressure on your gp, insist, explain why you insist and that you need his support, don't give in.

    I know it's tough when feel so awful.

    Personally I have had some tests via go and some private.

    Wish you well xx

  • Oh im really so sorry to hear this its such a horrid place to be in we do sound very alike hoe awful .im glad that i have come no here any way people are great my life has come to nothi g im afraid .im loosing more weight ss i cant eat i follow a very restricted diet as i have bowel issues as many do so i here ill try also tofind someone else if i can another dr dr myhill was the cfs specalist and in not going there again i was pregnant and because ive always been told no babies no one knew they found out buy mistske and i lost her . Ty m

  • I was ill at work for a few years tried to cope but kept loosing my temper so frustrated and was loosing weight too .i was retired on ill health at 37 11 yrs ago now had to come back to the uk too my weight was a huge problem all my life i was a larger lady them exercised too much and things went wrong i was 7st for years and then i just dropped in 2 weeks to 5st 8 and i was eating like no tomorrow

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