NHS just doesn't get it!

Went to see the nurse at the GP surgery to have yet more blood tests, GP thinks I've got CFS, I think otherwise..... Anyway I asked what the tests were for and amongst others, was told thyroid. This would have been TSH only and when I suggested this should have been fasting and early morning was told that only applies to parathyroid testing and made no difference to normal thyroid testing. I give up! I go to see the GP in a week to ask for vit B12 injections so when they're refused as I expect them to be I think I'll start self medicating and see what happens. Getting nowhere with NHS :(

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  • Sorry you're having trouble. It took me almost 9 months to get diagnosed and on thyroxine. My tsh was 9.28 before they finally listened. I too was told I had cfs when it was an underactive thyroid.

    My gp knows nothing and I've had to do private tests and back up my results with evidence people on here sent me to print off.

    I had my test privately with Blue Horizon. Or you can use Medicheck. They do a tsh and t4 test for about £30. You can do it fasted in the morning and it'll give you a good idea if your thyroid is struggling and then you've an argument with your gp.

    My tsh was 5.35 and the nhs said I was fine. When it rose to almost 7 I was still told I was fine and being a hypochondriac.

    I hope you get some answers soon. I know how awful it is dealing with a gp that won't listen and just leaves you unwell.

    Julie

  • And I forgot to say my gp said I was wrong about early testing. I proves that's wrong as my tsh was only 3 at 1pm. It was 6.4 at 8am. So I proved their theory wrong lol.

  • Anyone with access to google can pull up various studies showing a variance of TSH across the day :-

    naturalmedicinejournal.com/...

    ncbi.nlm.nih.gov/pubmed/258...

    liveonearth.livejournal.com...

    Etc.........

  • My GP said what I had been told here was rubbish. My TSH was 3 on the NHS taken at 1pm so he said I had no thyroid issue, my private results showed a TSH of 6.5 and he said it was wrong. lol!!

  • Lol - I love it when they try & refute scientific studies & evidence. My simple answer to the GP in your situation would be :- "spend the money & do a series of 4 blood tests across the day at 8am, 11am, 2pm & 5pm. Then we can compare the TSH fluctuations & get a definitive answer" ....

    ;)

    Absolutely ridiculous that they can't accept the facts :(

  • They don't have a clue! But, I think it's an international problem, not just the NHS.

  • Hi squirl9462 it's very hard isn't it!! I saw a lovely doctor yesterday who said they only test for TSH she didn't mention T4.. I explained I really needed to see what my T3 levels were and she said they don't test for that. It was only when I said my oncologist tests for T3 that she agreed to do a FASTING blood test..actually I have never had a fasting one done in 12 years!

    Am afraid they are governed by guidelines and budget and until there is much better training and understanding of what testing we actually need it's a constant battle.

    My approach was gentle and not bombastic and she ended up saying you obviously know what you are talking about!!!! When you tell doctors you are self medicating it obviously is worrying for them, but to be honest when I wasn't self medicating and being 'monitored' I got very ill indeed. My Endo is monitoring me so together we are trying to work out dosage. (He doesn't test t3 though) 😭

    I hope very much you get some support and proper diagnosis..I have learnt the hard way and in the end had to self medicate to be able to function again, plus I changed surgeries!!

    Keep posting on here when you need help or advice.

  • Personally I refuse all thyroid tests at the GPs surgery. You can refuse if they don't test for the right things. I just tell them they won't understand the results as I am on NDT not levothyroxine.

  • Thank you all for your advice and comments, it's so demoralising but we'll see what they say next week when I go back again...... It really helps when you realise you're not the only one even though it feels like it a lot of the time :)

  • It's miserable isn't it. Unfortunately I have nothing helpful to add but am having similar frustrations. My doctor is lovely but looked at me like I was mad when I said about low stomach acid and says I don't need B12 testing despite being hypothyroid and a long term veggie who uses a PPI. So like you if I don't get anywhere with this round of testing I'm going to just try and work it out myself. And use private tests. Hope you get your B12. It just shouldn't be a battle :(

  • Well I went back to the GP today who talked to me like I was 5 years old and just didn't understand. When I mentioned the TSH should have been tested early morning and fasting she said it was fine, and if it was higher first thing in the morning then a higher reading is better!!!!!! Also a B12 test isn't part of the screen for CFS but she would do one if I thought it would help but if the result was low but within the range there would be no treatment - so much for treating the symptoms. She also wouldn't give me a printout of my results. I give up. I've got one more appointment for yet another blood test and once that's done I'm going to start self-medicating. I'll start with sublingual B12 and if that doesn't do the trick then I'll get some injectable B12 from abroad, could well be asking for PMs to help me find a reputable supplier. If the B12 doesn't work at all I think I'll try NDT and see if that makes a difference. I just can't go on like this, I start a new job in just under 4 weeks so will need the capacity to learn....

    Sorry for the long rant but I could have cried today after seeing the GP, if I'd had the energy I think I would have shouted and screamed at her but just couldn't raise the oomph :(

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