I feel awful but Doctors say theres nothing wrong I dont know what to do???

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi Everyone , Im new to the forum and  I'm hoping someone can give me a little feedback. Quite frankly Ive been quite poorly and now I think I'm being viewed as A hypochondriac, but I am convinced I have a thyroid issue . My Doctor and now it seems my Endocrinologist are wiping there hands of me as they see no underlying endocrine cause. I do have a pituitary macroadenoma but The Endocrinologist says my bloods dont show anything wrong. Sorry to bore everyone but a brief synopsis-

Im losing my hair

Ive put on 3 stone in 3 months despite no change in my diet 

I have poor memory

Im exhausted all the time

I get headaches

Erratic body temperature

By late afternoon everyday Im getting cramps in my lower legs and my feet to the extent I can barely walk

Ive had bloods done and the only results I have are

March 15 TSH 3.9

Free T4 13.6

Dec 14 TSH 2.1 

Free T4 12.5

My recent bloods I believe show my TSH  at about 2.9 again

My Vit D keeps falling it was 17 and after 3 months supplimentation Im at 51 - this is the second time it has dropped.

 Please - has anyone any input ?

Thank you

0 likes, 18 replies

Report

18 Replies

Next
  • Posted

    Go back to your doctor and reinstate your position. I would suggest you ask your doc to see another specialist, a different opinion, ask him/her to be really selective for you, because of how you feel. Impress him/her.

    You did not mention your weight and it’s your private matter but in that area you have to try and help yourself. For myself I have always taken the view that if I didn't eat I would not get overweight, indeed just the opposite smile smile which goes for all of us.

    Good Luck, keep at it.

    Report
    • Posted

      Hi There thank you for replying I appreciate your comments. As far as my weight goes I had my gall bladder removed 18months ago and for the past 2 and a half years I have been on an extremely low fat diet. I have consistently been 9.5 st until the last 3 months when I have just broke the 13st mark,. Nothing in my diet / physical activity has changed and I am at a loss as to how further abstinence from food is going to help my health.

      Thank you for the feedback and supportive comments

      Report
    • Posted

      Just a nod back, your writings seem to indicate that you laboured on the weight issue which was meant to be an after thought with smiling face, I need to loose some weight myself.

      Rather concentrate on the first paragraph which I have repeated below.

      Go back to your doctor and reinstate your position. I would suggest you ask your doc to see another specialist, a different opinion, (a second opinion) ask him/her to be really selective for you, because of how you feel. Impress him/her. Remember GP's see so many people its impossible for them to keep individuals complete problems in their head and I would say also on their computer, so help your GP out and go back and appeal to him/her.

      Report
    • Posted

      Hi again thank u I did try my Gp has told me she can do nothing more for me . It was she who said I should see the Endocrinologist again. The response I got from the Endocrinologist yesterday was that she felt there was no need to see me until the end of the year when I have a pre existing follow up appointment. Im just trying to get an opinion of my symptoms as a whole if thyroid would make sense. Everything seems to be individually not as a whole picture
      Report
  • Posted

    Hi,

    I was passed over by multiple doctors before I had someone listen. This may just be my experience, but I found that going to a female GP made all the difference. I'm not sure that this is your experience, but I've had multiple occasions ( not just dealing with thyroid) that the male doctor think it is just 'in my head'. It was only when a woman listened that something was sorted. That said, I do not want to say that, that is the case across the board.

    have you looked into Functional Medicine? It looks more at the symptoms than the numbers. May be worth a try. Good luck!!!

    Report
  • Posted

    You have little real choice other than to continue down the route of seeing a doctor, doctors are human beings and subject to frailties as is everyone else.

    Contact the surgery again and ask to see another doctor, don’t think they won’t like this; it’s not uncommon so persist.

    I good doctor can be better than a endocrinologist, note can be, you have to get a listening doctor, keep trying, you will succeed, don’t give up, you will get there in the end, we all know it shouldn’t be as difficult as it is, but that’s life, it aint perfect.

    Report
    • Posted

      Hi There sorry I havent replied before - so at l have found a doctor who will listen and indeed has listened - Hopefully I will get somewhere - and even more hopeful that I will start to feel better.

      Thank you once again for your replies

      Report
  • Posted

    Hi Michelle,

    Have you had b12 and feritin and folate tested, low numbers in these cause very similar symptoms to hypothyroid, worth getting them tested.

    Also nothing wrong with asking for a theraputic dose of levo. Your TSH is high enough next time you put your results on put down the ranges also as I am not sure where on the range your T4 is if this is at the high end this may be the reason they will not supplement.

    plus they have not tested FT3 ask it is normally refused and I would get it tested privately if this is low then you have conversion issues and they will have to treat you.

    T4 is like a larder and sits in your body waiting to be converted into T3.   When T3 drops low we get symptoms.  If your T3 is low and your T4 is high then you are not converting and you have some ammo for the endo.

     

    Report
    • Posted

      Hi Again - BI2 feritin etc all seem fine -

       

      My T4 keeps changing and has been as high as 4.1 apparently - The Doctors (even today when I was with them ) keep quoting the 2-5 range and telling me that Im within normal range .

      My T4 is around 12.5 (TSH 2.1) - 13.6 (tsh 3.9 ) on a range of 9-24

      I dont believe I have had FT3 tested

      Thank again

       

      Report
  • Posted

    Re your Vit D, when you were supplementing was it very low ie under 25.  If so you have to supplement for ever, your doctor should know this I had vit D of 10  should be over 50 i think.  So once you are in credit again so to speak your doctor should continue with a lower dose on presciption I have only just started but will have to take min 800 ui for ever.   I got my gp to check with a specialist.  however you can look this up on the NHS local health board information to doctors it is the guidelines they follow you can print it off and take it with you.  They will have to prescribe supplements if there own health board recommends it.  type guidelines on treatment of vit d Deficiency in google along with you county name and it should come back with the information you need.

    I hope I have been of some help

    Report
    • Posted

      Hi there

      Im sorry I havent replied before - thank you for the message. My vit D was 17 after 3 months of supplementing Im at 51. Yes I believe I have to continue with a smaller daily dose

      Report
  • Posted

    Hi Michelle....have you had an antibody blood test done?
    Report
    • Posted

      Hi Lou

      Thank you for your message - I went back to my doctors surgery today and seen a new Doctor - after insisting that I was going to self medicate he is sending me for some more tests including an antibody. Apparently my TSH has been up to 4.1 - it keeps yoyoing. We shall see - thank you again

       

      Report
    • Posted

      Ah good, that could be the key. I went to my doctor for years feeling awful. He did normal thyroid tests and results always came back OK, the last 2 came back borderline but they still wouldn't five me any medication. Its only because my sister (who was diagnosed 12 months previous) told me to demand an antibody test that I finally got a diagnosis and medication. Mine was all down to the pituitary gland. 5 months on I must admit I still feel awful, I currently take 100mcg of levothyroxine. Can't wait to start feeling 'normal' again. Good luck x
      Report
    • Posted

      Thank you- I'm sorry that you are still not feeling good - To know that other people have experienced similar things is a positive for me, it makes me more determined to get the help I think I need. I hope you start feeling better soon x
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up