Fibro and Hughes

Hi all my name is Jayne I have aps and fibromyalgia aps diagnosed over 10 years ago and fibro about 5 I am having an issue with my appetite as I don't have one does anyone else get this and I have trouble with excess fluid I'm on medication for a bladder problem I can't have water tablets any ideas on how I could get rid of this its mainly in my knees which are very painful I'm at the end of my tether thanks for reading

Jayne xxx

20 Replies

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  • HI there and welcome, the trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid disorder, in many cases unfortunately due to Thyroid testing being a) very narrow banded in the uk and b) also an over reliance on the TSH test rather than all the others including Thyroid antibodies. People often slip through the net and get told they have Fibro

    . I was not happy to settle with that, personally. I joined Thyroid UK's forum on here and followed their advice as per private testing, and paid to do much more reliable tests which showed I had a very slow Thyroid, once treated my water retention disappeared, or most of it. I also urge you to test your iron, your B12 and your vitamin D, this will all add to your problems if low at all.

    MaryF

  • Hi thank you for your reply I have heard of Sjogrens before but never been tested for it I have a very low vit d level I've had a lot of blood clots and have been told recently I have brain lesions which have been put down to strokes because of the Hughes but I'm wondering if it could be something else I take a lot of medication including

    Warfarin, amitriptyline, aspirin duloxetine tramadol and dihydrocodeine are just some of them I'm scared the Dr has missed something she tells me to accept my limitations but I'm not that sort of person I've had to fight all my life I don't intend to stop now

    Sorry didn't mean to write so much

    Jayne xx

  • I suggest investigating your Thyroid via more detailed testing as suggested above, even if just to rule that out, on top of all your other health problems, best of luck. Thank goodness you have a diagnosis and that you are on some medications to help you. MaryF

  • Thank you for your reply I will mention to my go about thyroid I hope she listens I've been there 9 years and last time I went over she asked me why I was on warfarin doesn't fill me with confidence xx

  • As said above, the GP will only do your TSH which is highly unreliable, the only way I am afraid is to do private and very detailed testing! If you want to do this, you can, as mentioned above, via the recommendations of Thyroid UK. MaryF

  • Ok thank you Mary I'm on benefits so I doubt I could afford the tests xx

  • Yes it is a shame, some are not too expensive, and it is awful that they are not done on the NHS. So many people are told they are fine Thyroid wise, when clearly they are not. MaryF

  • It's very frustrating Mary sometimes I feel like no one listens maybe it's time for a new Dr xx

  • Are you under a recommended Hughes Syndrome/APS specialist? MaryF

  • No I have never seen a specialist for aps just got a letter telling me I had it and that was that x

  • Can you tell me where you are located? MaryF

  • I live inbetween Chorley and Preston x

  • You need your GP to refer you to one of these, it will not only help you, but help them:

    NORTH WEST NHS Specialists:

    Professor Imelda Bates

    Consultant Haematologist

    Royal Liverpool Hospital

    Prescott Street, Liverpool

    Merseyside L7 8XP

    Telephone: 01517 0643

    _______________________________

    Professor Ian Bruce

    Rheumatology Clinical Lead

    The Kellgren Centre of Rheumatology

    Manchester Royal Infirmary

    Oxford Road, Manchester M13 9WL

    Telephone: 0161 276 4357

    _______________________________

    Dr Feroza Darwood

    Consultant Obstetrics and Gynaecology

    Department of Obstetrics and Gynaecology

    Liverpool Women's Hospital

    Crown Street, Liverpool

    Merseyside L8 7SS

    Telephone: 01517 089988

    _______________________________

    Professor Charles Hay

    Consultant Haematologist

    Department of Haematology

    Manchester Royal Infirmary

    Oxford Road, Manchester M13 9WL

    Telephone: 01612 764801

    _______________________________

    Dr Rachel Gorodkin

    Consultant Rheumatologist

    Department of Rheumatology

    Manchester Royal Infirmary

    Oxford Road, Manchester M13 9WL

    Telephone: 01612 761234

    Professor Vanessa Martlew

    Consultant Haematologist

    Department of Haematology

    Royal Liverpool University Hospital

    Prescot Street, Liverpool

    Merseyside L7 8XP

    Telephone: 01517 064322

    _______________________________

    Dr Stephen McKew

    Consultant Haematologist

    Department of Blood Sciences

    Countess of Chester Hospital

    Countess of Chester Health Park,

    Liverpool Road,

    Chester, CH2 1UL

    Telephone: 01244 365000

    _______________________________

    Dr Andrew Will

    Clinical Director

    Department of Paediatric Hematology

    Royal Manchester Children's Hospital

    Oxford Road, Manchester M13 9WL

    Telephone: 0161 7018416

    NO PRIVATE NW SPECIALISTS

    MaryF

  • Wow thank you I've got more help off you than I have from my Dr I will ring my gp and make an appointment for a referral

    Thanks again xx

  • Hello Jayne. You have been given some good advice by my colleague but I will just say that I was told I had Fibro and it turned out to be more Sjogrens and an unstable thyroid which Id had for years anyway due to Hashimotos. Unfortunately when you have one autoimmune condition others tend to come along to join the party.

    So Im not saying you don't have Fibro, far from it but in the 5 years I ran Fibro Support meetings I rarely saw people that were not either misdiagnosed or had not been properly tested to rule out other conditions. Prof Hughes often says that people who don't get well on their Hughes medications often find that something else is going on so getting everything else checked out is essential or you will never get your condition under control.

    Please make sure they test (or you do if you do private tests like Medichecks) FT4 FT3 and both Thyroid antibodies as well as the TSH. If any of those are not in the correct ranges, Vit D at least at 75-80 and your Ferritin around 95-100 as well as B12 over 500 you will not be getting good results. Of course your GP will say that some of those levels are not needed but with this condition we know from experience that most people will need that. 😉

  • Thank you for replying my vitamin d is really low I've been on supplements twice with my Dr they don't follow up on things last time I was given someone else's results its a joke xx

  • Hi Jayne

    I too have A PS and Fibro and like you am on similar medication (although I have decided to come of tramadol).

    Some days I really don't want to eat as I feel really quesy but on others I can't get enough sweet things.

    I was tested last year for Sjorgrens but was told my indicators were not high enough to confirm the condition sadly I still have the symptoms.

    These conditions can be very trying and I wish you the best of luck with your battle

    Claire x

  • Thank you Claire its really hard having two illnesses I am not convinced that I have fibro I think the Dr got fed up trying to find what was wrong I was diagnosed with aps by letter and they just left it at that hope your well today x

  • I agree and sometimes think if I was being better treated for the aps I might have less other symptoms.

    A day at work beckons, Hope you have a good one

    Claire x

  • Have a good day xx

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