Confused!

No diagnosis but have experienced symptoms for months now, no joy as yet with gp but I've researched my symptoms as much as I can! My confusion is there are so many illnesses with the same /similar symptoms! Hypothyroidism,fibromyalgia,ms,chronic fatigue etc not sure which way to turn? Gp given me ads says it's psychological! But have had to stop taking them due to reaction. Need help with direction with my doc as I'm sure he just thinks I'm a silly woman! Fyi my mum has fibromyalgia and is hypo too.

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  • Hi misunderstood1,

    Firstly - welcome to the forums - have you joined the thyroidUK forum here too?

    Now, sadly I have to let you know that some doctors are just utterly pointless - I know this as mine is soo useless it makes me cry to think about it.

    However - if you go in armed with information they do sometimes see sense. Also, did you know that you are entitled to change your doctor at any time, without giving any reason? might be worth bearing in mind if this one is persistently stubborn in his stupidity - it is not always as easy as it should be but people here can advise you if and when you decide it is time for a change.

    As your mum has no doubt told you, FM is a pain to diagnose, there are some standard tests but the doc will probably need to send you to a rhuematologist for him to do them ( pressure point tests etc) - so, ask your doc to see one.

    Also - how are you with your Thyroid - have you been diagnosed Hypo, if not - it is an easy test - try to make sure they don't just test TSH, but also for thyroid antibodies - why - because thyroid antibodies show an autoimmune disease and could point at other autoimmune diseases along the way.

    As your mum probably does, you will be given a thyroid replacement hormaone if you are Hypo, and then after about 6 months you should start feeling better - but be prepared for them to faff about with your dosage for a year until they get it just right.

    This does not exclude you from having other things too - remember that - docs often forget and deny you could have anything else wrong with you if they are treating you for one thing already :-)

    Most importantly - write down your symptoms in a list, make a copy - give that to your doctor, and ask him what he is going to do about it. Ask him what investigations he suggests, wheat treatments he suggests and how effective they are, are there other treatments more effective, and can he rule out any other possible causes, and how did he rule those out.

    You are entitled to these answers and asking them shows you are serious and also makes them think about what they are doing and what thought process they put into their diagnosis and treatment plan for you.

    There are losts of people on here that can offer you advice and hsare their experiences with you so you know what to expect. I will not bore you with mine, it is all to miserable, but if it is one of the last things I do - I hope I have helped you a little.

    Best of Luck,

    M

  • Thankyou I have joined thyroid UK too and I'm shocked at how many similar stories to mine there are! But in a way they are a.comfort to me that I'm not crazy or a hypochondriac! So far I've only had tsh test done and as with many of you they're normal! Mum wants me to ask for the antibodies test but my gps don't like being told! However I have been let down before so I guess I could use this as my ammunition! Thankyou again you have helped just by reading my post and.responding.

  • Hi missunderstood1

    I have read your post with so much pain and sorrow for the confusion and frustration that you are being forced to endure. I have pasted you a couple of links below to the FibroAction website and NHS Choices on Fibro. I hope that you find them useful:

    fibroaction.org

    nhs.uk/conditions/fibromyal...

    My wife suffers from MS, and the way it is diagnosed is through an MRI of the brain whereby they spot little lesions on the outer surface of the brain. Unless you can persuade your GP to send you for an MRI, there will be no way to prove or disprove any lesions.

    I have also pasted you a link to the NHS Choices web page pertaining to Hypothyroidism, so I hope that you also find this useful:

    nhs.uk/conditions/Thyroid-u...

    As Mrs_Somerset has said, if you go prepared to see your GP or Consultant then you will have some ammunition when stating your point of view. I want to wish you all the best of luck with getting some resolution and relief to your problem.

    All my hopes and dreams for you

    Ken

  • Thanks for the links very useful although I have seen some of them previously on my perilous journey for knowledge! I'm trying to remain positive but it becomes difficult each time I'm told there's nothing wrong. However,your right I have a right to be taken seriously. I'll be forty in just over 24 hours time but I feel far from fab! I feel trapped inside a body that doesnt want to function.

  • Hi missunderstood1

    I want to wish you all the best of luck in finding the answers that you rightly deserve from your doctors. I also would be delighted if I could wish you a very happy, wonderful and pain free birthday ..... happy 40th birthday!

    All my hopes and dreams for you

    Ken x

  • You need to ask for a second opinion and see a rheumatologist. I went to them not having heard about fibro. Gp didn't know what was wrong. They did. X be brve & strong you can do it. Xx

  • Welcome Missunderstood,

    It is so awkward at the beginning isn't. It does sound as if your Doctor requires some serious information about Fibro.

    You are right quite a few things stand side by side sharing symptoms so what you need is to get a referral to a RhumTOLOGIST (oops sorry about that) The rheumy will work through all the thing it could be and then pronounce what you have.

    So back to see your Jolly MD and get that referal. If no joy change your Doc.

    good luck xgins

  • Also don't always believe the docs when they say results are "normal" but do always get a printout of your results ( work with the receptionists on this-you are allowed to have them) also have you had a look at stop the thyroid madness.com website-lots of interesting info on what tests you need and what results are "optimal" .... Not just "in range"

  • This is no comfort but Monday I asked my GP "some people seem to get referral to rheumies, some to neuros - why?" He came back honestly with "We just don't really know where the cause lies". It can be a long hard struggle and from stories like yours I'm beginning to think some GPs don't like admitting "defeat" i.e. they've no idea how to proceed with us, or where to go. That's far from true for all of them, bearing in mind they're hard pressed with people I could name turning up every time they sneeze. Just keep the pressure up. You'll get there in the end.

  • You need to switch doctor's. I feel that you have Fibromyalgia. From your symptoms. I also have trouble with med's I used to take my whole life. It's a terrible disease. You only have a few good day's, that's with the help of med's that work. I hope and pray this helps!!!

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