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Losing the will with these symptoms!

Posted , 8 users are following.

Lou75
Lou75

I feel like I'm coming to the end of my tether trying to cope with all these symptoms and still can't get a firm diagnosis.

In June I had some blood tests done via my GP. The symptoms which have got progressively worse over the years were things like weight gain, extreme fatigue, muscle and joint pain, hair falling out, dry skin, brittle nails.

The blood test results came back and my GP suggested borderline hypothyroidism. My TSH level was 7. He suggested that I make another appointment for blood and antibody tests in 3 months.

I had the tests last week and called for the result today. The receptionist said that the notes suggest more tests in 6 months!!!!!!!! I've made an appointment to see my doctor on Thursday to find out what the levels were.

If it's still borderline, is there any treatment at all that I can get? I'm really losing the will with feeling awful constantly sad

0 likes, 15 replies

15 Replies

  • m72934
    m72934 Lou75

    Posted

    I am not surprised you feel terrible.  I would suggest that you consider making an appointment with your GP to discuss your results and any possible treatment (even a trial?) in more detail.  If you still have problems then I would suggest you consider seeing a different GP.  I am not sure if I can provide links but there is alot of info (not all good) re hypothyroid on the internet.    

     

  • alyaBT
    alyaBT Lou75

    Posted

    why the 3 and 6 months wait? as far as i know these tests should be taken every 6 weeks! you probeply need replacement hormone to feel better, it will takes a few weeks to take effect, but it will and you will feel better

    i think you should go to another hosbital and find another doctor

     

  • marey
    marey Lou75

    Posted

    lou...the new normal TSH  reading is 1 - 2 ....

    7 is way over. i'm 5.1 and have had enough....find another doctor !!

    good luck. keep us informed x

  • m45825
    m45825 Lou75

    Posted

    Hey Lou75. We have the exact same symptons and I had a similar initial TSH... a year ago.  I get bloods every 6 weeks and now hav a TSH of 0.1.

    Still on the rollercoaster. Am on 85ug T4 and 5ug Tetroxin.  Just bumped it fown from 100ug T4 because its started to go to high.  When I have 'relapses' its the joint pain which gets me down the most.

    If you get a good GP they will give you a variety doses at you can play with them every 6 weeks as you go. I have scripts T4 50,75,100. SynthT3 and NDT3. I haven' tried the latter yet.

    • marey
      marey m45825

      Posted

      fantastic management you have m ...thats great....really heartening to hear. Do keep us updated!
  • Lou75
    Lou75

    Posted

    Thanks for all the responses.

    I already have an appointment booked for this Thursday so will see what the doc says. Really need to get something sorted before i drive myself mad!!

    I get private heathcare through work, it's something like a £100 excess but i'm thinking it might be worth trying to see a specialist through that if i don't get any joy.

    Thanks again smile

  • patient2014
    patient2014 Lou75

    Posted

    My advice is get another GP. Apparently I've had this condition for years and years, if I hadn't been fobbed off by my inept GP the TSH of 50 would have been discovered in time. An endocrinologist told me for how long you have had the condition that's how long it takes to recover. I don't feel anything like my old self and if it my TSH isn't 1 or below I feel like I have flu. Change doctors Lou, you have nothing to lose except your health.
    • Lou75
      Lou75 patient2014

      Posted

      Well I've just been to see the doc and been fobbed off again!  Still 'borderline ' go back in November! 

      I just burst into tears there and then. They didn't do antibody test which they  said they would do. I'm so down at the moment. All he wants to do is send me for counselling! Is that really going to treat all the symptoms?

      I'm worried that if I change docs I could  end up going through the same  again. sad

  • m72934
    m72934 Lou75

    Posted

    I'm sorry to hear about your appointment.  Unfortunately, this happens far too often.  I am not sure what to advise but if it was me I would continue to seek answers.  In my case I tried 3 diff GPs in my surgery and they all said I was fine.  I got upset etc and then frustrated and I thought I need to listen to my body and in my mind I had a problem.  I then went private and thankfully my thyroid issue is now a lot better.  Keep going and read up (that is what saved me) there are a number of good websites out there as well as this one e.g. Thyroid UK.  
    • sunshinemb
      sunshinemb m72934

      Posted

      I wrote a very similar post but it was deleted

      I too went private and pay for my thyroid prescription

      Not saying too much in case this one is deleted alsoredface!

  • m72934
    m72934 Lou75

    Posted

    I meant to say in my mind I know I had a physical problem!
  • dwynwyn
    dwynwyn Lou75

    Posted

    Hi Lou

    A key thing to try to get through to your GP is that if they didn't check your thyroid before you are ill then they don't know what normal is for you.  The "normal" range they go buy is a guidance on most people's levels but not rock hard certain.

    • dwynwyn
      dwynwyn

      Posted

      I saw one GP who diagnosed me, stuck me on 100microgrammes, checked my bloods 3 weeks later and confirmed I was ok despite my telling him I still had symptoms.

      Then I saw another GP who said it wasn't down to my hypothyroidism as my readings were normal despite my symptoms being the same as before I was on the meds, but a bit milder.

      Then I saw a third GP who listened to me and did some reading up between appointments and then put me up to 125 microgrammes.

      This has been a real revelation for me.  It is difficult, especially when you are fatigued and more emotional than normal, but you just have to make yourself try another GP until you get one that listens.

      Or try the private route.  Maybe if you can get a private referral to an endocrinologist they should at least know that normal results don't always mean normal.

    • marey
      marey dwynwyn

      Posted

      i wouldn't bank on that !

      but well done for persisting really good news....very pleased for you!

      many of us our supplementing...and thus able to reduce our thyroxin intake...so keep getting monitored. You do need to aim to get TSH below 2.....the old norm of 4.5 is way out of date and based on sick people's average....so seriously skewed. 

      Ideally aim for tsh of 1 or 1.5 to end symptoms....but try this:

      4 brazil nuts, for selenium, per day for 3-4 weeks reduce to less than 12 per week thereafter.

      oral zinc (or eat oysters if you can find mercury free ones and can bear them!!)

      iodine applied to your skin....so body can absorb as required

      iron precursor from fluorovite (gluten-free florodix) ...from health store.

      Hope this helps ...love marey xxxxxxxx find a naturopath for more specific dosages but above are the latest principles x

      most of us are gluten sensitive....(perceptive is my interpretation..there's no benefit to it except for gluing stuff !!)

  • Jill6969
    Jill6969 Lou75

    Posted

    I'm so sorry you're having these problems Lou - it doesnt help to know you;re far from alone in this. I have tried to post a helpful web site on here but I just get wiped out sad

    A TSH of 7 is WAY too high....mine now is 0.005 with my T4 at 20

    I really hope you get some help soon

     

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