Referral to Endocringology - what to expect

Hi

I've posted a couple of times basically I have virtually every symptom of an underactive thyroid, my TSH has come back at 3.06 (only test NHS did) and my GP has agreed that I have subclinical hypothyroidism I also have a goitre. The GP said that because my TSH isn't over 4 she can't prescribe medication but due to the fact I have all the symptoms and a goitre she can refer me to endocrinology. I just wondered if anyone knows what I should expect, I have a horrible feeling that I'm going to be brushed off but wasn't sure if anyone had a similar experience and did you find endocrinology to be more helpful in dealing with the symptoms that GP's etc. I'm not criticising my GP as she's the only one who finally seems to be listening at my surgery and she said to me today "I'm sure it is your thyroid causing your symptoms, unfortunately the good old NHS just gives us a TSH result and based on that the guidelines are to not treat until it's over 4, goitre or not!. So just wanted a bit of advice really. Thanks

8 Replies

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  • Munchlet,

    NHS tests TSH, FT4 and FT3 but some CCGs have agreements with their local labs that FT4 and/or FT3 and/or antibodies will only be tested when TSH is abnormal.

    I don't know whether or not your endo will agree symptoms are thyroidal and commence treatment when TSH is within range or will simply monitor the goitre and levels. It could go either way.

  • The more I hear about the NHS and their ridiculous 'rules' the more I am inclined to stay away from them. TSH is not, and never has been, a good indicator of thyroid health but you just might think that a goitre might give someone a clue something is not quite right with the thyroid - or did it suddenly decide to enlarge because it was bored one day!!

    My understanding is that TSH is higher later in the day, perhaps you could delay your next test until the last appointment of the day to see if you can get a reading that will bring you over the magic 4, although having said that the surgery needs to get blood to the lab so there is no doubt a limit on how late in the day you could have it done.

  • You have things the wrong way round, jan4363.

    If you look at an entire 24 hours then TSH is at its highest at about 2am and lowest mid-afternoon.

    But if you look just at the part of the day when people can get blood samples taken for testing, TSH is highest first thing in the morning.

    To get the "best" results from a blood test for thyroid the following rules should be followed :

    1) Get blood taken by 9am at the latest (if at all possible). Earlier is better.

    2) Don't take levo for 24 hours before getting blood taken. If necessary, alter the time you take your levo the day before the test. Take any missing dose after the blood is taken.

    3) Fast overnight and don't eat breakfast or drink anything other than water until after blood is taken. Water can be and should be drunk freely - being dehydrated must be avoided.

  • You are absolutely right HB, I don't know my TSH from my big toe!!!! So many years since I had it tested I had clearly forgotten my basics.

  • Thank you guys, I think even the GP was a bit frustrated I did say to her that last year when I had bloods done privately my FT4 was 12.94 in a range of 12-22 and she said that it indicated my thyroid was not producing enough hormone and in her view I needed some medication but guidelines state it shouldn't be prescribed if the TSH is below 4 which is why she referred. It is frustrating. I'm tempted to get the labs done privately before I go so I can actually give them the results.

  • Personally I would always get full Thyroid plus eleven test done before I go to appointment.

  • Did you also get GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

    When you get results suggest you make a new post on here and members can offer advice on levels & any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these. £99

  • They literally just did a TSH test!! Even the GP said it doesn't really tell her anything and she at least needed a T4 level but she said that by referring me she hopes they'd do the full range of tests. I think I will probably get some done by Blue Horizon to be on the safe side, I had some done with them last year and they are so quick and reasonable. At least that way I know my own results. Thank you for the reply and advice I will keep you all posted.

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