A blood test only checking TSH: what's the point?

Hi guys,

I am on 50mg levo after a few years ago my thyroid rocketed up and then went slow and they gave me levo, weaned me off over a couple of years, and then it went slow again (I believe they think it was caused by a virus but once it's gone it's more likely to go again - is how it was explained to me).

I've never had symptoms before now but have been having more frequent bouts of severe fatigue and gained 5kg. I am a weightlifter so I compete in a weight class so obviously this is an issue and not due to my diet or fitness levels. The fatigue has me sleeping all day for 2-4 days and I collapsed at the top of the stairs last week with exhaustion. 2 days later, I was lifting over my body weight. Something is clearly wrong!

My GP agreed to check my thyroid again after my iron levels came back normal but the nurse doing the test today said it is just for my TSH - help!

Am I justified in requesting to see an endocrinologist? I have to say, I have little to no faith in a GP managing what appears to be such a complex balance.

7 Replies

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  • I'm sorry to say that you probably shouldn't have faith in an endo managing it any better. :-) By all means ask for a referral to one of the doctors on the TUK list, but don't rely on them to necessarily be a lot better.

    My nhs endo was fine but effectively expected me to improve on levo and after a year of being on a high enough dose to do whatever it was ever going to do for me, I didn't feel much better. He didn't really respond until I went to a private doc who prescribed t3, and then endo acted like he'd thought of it first. In the end my gp didn't want to prescribe it and endo won't so that wasn't much help.

    And of course you only see them two or maybe three times a year, so you tend not to get enough of the right attention to make it helpful. :-)

    You could press for t3 and t4 but some labs are just flat-out refusing to do these tests now. If you want to cut to the chase, have the test done privately and post the results here. It will help you know what to press your gp for.

  • Thanks so much for your response :) I have had a look at the cost of the tests online and I just can't afford £200+ ! I am volunteering at the commonwealths this year and am paying for flights and accommodation and have to go back and forth for training and uniforms etc it's costing me a packet (I estimate £1500/2000 by the end!) I feel really stuck :(

    I intend to ask my GP to explain fully how the TSH level can tell them what T4 levels there are and what level has been transferred into T3 in my body. In 2 words: I'm stuffed

  • Not that this is cheap but I think it should cost less than £100 for your test. I do know they have a variety of ways of testing so it depends on where you live and whether you want to travel to be tested. I would advise ringing Blue Horizon Medicals (or similar) and asking what the most cost-effective way is to get the full tft. BH in particular has a confusing array of test options but if you ring or email they're very helpful.

    Good luck with the gp. Sometimes they can surprise you. :-)

  • Go to the main website and look for Blue Horizon, you can get a small discount by going through TUK. thyroiduk.org.uk/tuk/testin...

    If you can't get to one of their clinics then you can do a home fingerprick test. You get the results by email with a doctor's comments and advice if something needs attention.

    There are several to choose, I find that the thyroid intermediate is good, gives you TSH, Free T4 and Free T3 - scroll down to 'home blood tests' and follow the link. Using TUK10 code gets you £10 off.

    Marie XX

  • Genova Diagnostics UK is a reliable place to get tests done. I'm not sure if you can get a discount being a member of Thyroid UK or not, you will have to investigate. Genova do a couple of thyroid blood tests :

    1) Total Thyroid Screen : gdx.net/uk/product/19 This costs £99.00 with no discount.

    2) Thyroid Plus : gdx.net/uk/product/140 This costs £136.00 with no discount.

    Test 2 is the same as test 1 with the addition of a reverse T3 test.

    There are also urine tests available for thyroid investigations, but I wouldn't have a clue how to interpret the results so I've never had one of those done.

  • TSH is quite simply not enough and pretty darn pointless

    If you have Central /2ndary Hypothyroid TSH is useless

    Its Free T4 and Free T3 thats important plus thyroid antibodies

    Clearly you have many of the symptoms of hypothyroid and given the silly responses you have received before suggest you need to find an informed GP

  • I always ask for the tests I want. My TSH is checked every 6 months as directed by Endo and Path Lab. I have hashis but am not on thyroxine and neither do I want to be on it! I have asked for B12 and Folates - done. Peroxidase is off the scale so I check on this occasionally - hoping I can somehow get it down.

    In my experience, all requests (often on advice of commentators on this site) have been met. I never demand additional tests but ask politely and always give a reason. I am always advised that request will be made but the path lab have rules. I must say I am impressed by the staff at the path lab who write clear advice to GP on further action on possible causes/whether a referral to specialist should be made, how frequently blood tests should occur etc.. I discuss all issues with a GP and do not expect them to be experts in each area. Having lived throughout the country and abroad I have dealt with many, many practitioners. Some have had special skills - others not. I think it is unrealistic to expect a GP to be an endocronologist. They follow guidelines developed by the Society of Endocronologists. Further, in my experience they are always willing to listen and learn. Like all professions some are better than others. However, I have never met one who did not have my best interests at heart.

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