Need help

Hello can any1 tell me how they got tested for t3 ? I have battled constantly with my gp who refuses to test anything other than tsh since first being diagnosed in 2007 when I was being investigated as unable to get pregnant. During the past 2 years I have been put on regular laxatives and also amatriptaline for migraines but from reading things from other post on here could a change in thyroid meds be the answer rather than extra medications?, I am hopefully going to try to find an endo and pay privately to get some answers as I don't find my gp helpfull at all . Does any1 have suggestions on what tests I should be asking for and could any1 recommend an endo in Stockport/ Manchester area? I am currently on 125mcg of levothyroxine (just increased from 100 mcg) as my last tsh (april16) reading was 4.1

Thanks in advance and I hope this makes sense as I find it all very confusing😬

14 Replies

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  • Hi Mel,

    Sorry to hear about your struggles. Many on the board opt for private testing when they have problems getting the tests on the NHS. Blue Horizon offers a full thyroid testing...there is a discount code floating around the board too.

    bluehorizonmedicals.co.uk/e...

  • Thank you I will have a look x

  • Should I get these tests done before I try to see an endo then or would they do there own bloods?

  • Blue Horizon tests tend to be cheaper than getting tests done privately by a private doctor or private medical practitioner.

    Like with the NHS it's up to them whether they use the Blue Horizon test results but if you have them done and gleam information from people on here, you can ask the endo the right questions.

  • Not certain but I would have thought a D102 gene test would be good ammunition too. ie. whether you can or can't convert T4 to T3. One kind lady wrote to me :- "I have had the DIO2 test done recently.

    Contact Justin at Regenerus laboratories (0333 9000979) further details are on the ThyroidUK site. To start with you'll have to decide if you want your results to go directly to yourself and speak with a genetic counsellor or your own medical practitioner and they speak with you. I chose the former.

    The saliva swab gets posted out to you and there's a comprehension questionnaire to fill in. As it goes to Luxembourg the turn around time is a couple of weeks.

    I opted to bite the bullet and pay for both the swab and genetic counsellor at £60 each a total of £120.

    I now know why I'm Biochemically "normal" i.e. within Thyroid panel range for my GP but CLINICALLY hypothyroid for the past 27 years as I have a faulty DIO2 gene expression.

    This enzyme is crucial (amongst others) and is the final biochemical reaction from the blood T4 into the cell mitochondria T3 releasing the vital molecule of iodine to every cell in the body.

    The test is worth every penny".

    We need everything we can get our hands on as proof we are still unwell. Good luck

  • Thank you I will look into it, not heard of this before but def sounds a good idea x

  • Mel35,

    Your GP should retest your TSH 6-8 weeks after the dose increase. I would wait until your TSH is around 1.0 before ordering a private thyroid test as you will get a better indication of whether FT4 and FT3 are adequate then. I wouldn't bother with the DIO2 gene test.

    TSH, FT4, FT3, thyroid peroxidase and thyroglobulin antibodies cover the bases. Order one of the home tests from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

    Conception can be difficult when TSH is high. NICE recommend the TSH of women planning conception should be in the low-normal range of 0.4-2.0 with FT4 in the upper range.

    cks.nice.org.uk/hypothyroid...

  • Thanks for the advice it's all so confusing will ask for a repeat tsh to check the levels after the increase then order the tests, I did manage to have a child so all was good there my tsh before diagnosis was 71!!!!!

  • Why would you not bother with the D102 test ? I've not heard of it before x

  • Mel35,

    Because I don't see the point in paying for gene testing that most GPs and endos can't interpret or apply. Some members have found it useful in persuading their endo to prescribe T3 in combination with Levothyroxine but it has made no difference to others.

    There's information about DIO2 testing in thyroiduk.org.uk/tuk/testin...

  • Ok thanks xx

  • As Clutter said, you ideally need to wait till your Levo dose is settled before testing (at least 4-6 weeks after any dose increase, longer if after a dose decrease)

    If you can afford it, the Blue Horizon Thyroid plus eleven test, will also check your vitamin D, B12, folate and ferritin ( some or all often low with thyroid issues.) Many find they need these at higher end of range to enable thyroid hormones to work properly

    If you have high antibodies (Hashimoto's) then trying a 100% gluten free diet may help reduce symptoms and lower antibodies.

    You need to make sure you take Levo on empty stomach. If take in morning, no food or drink other than water for at least 30 mins, ideally an hour after. Avoid taking any supplements within four hours - especially iron. Some of us prefer taking thyroxine at bedtime. Again at least 2 hours after eating and only water after.

    Usual advice When you go for blood test - don't take Levo in 24 hours before hand - aim to get test as early as possible in day (9am) and only drink water beforehand, then take missed thyroxine immediately after test.

    One other thought. Is the brand of thyroxine you have always the same? Many of us find only get on well with certain brands and changing brands after a new prescription can upset things

  • Ah that's interesting I have for the past few months had a diff brand from the pharmacy I wonder if that has made me feel worse? I take my meds at nite but after reading things posted previously I tried taking them separate from my amatriptaline but I felt worse, really depressed and slightly mental with very bad mood swings so I've just changed back to taking them at nite. I have been trying to cut carbs down as these make me feel so sluggish and I exercise lots but have still put a stone on since Jan (which I can't afford to do as already big) will def get the tests done once I've asked the dr to retest tsh after the increase, thanks so much for your help x

  • This same thing happened to me, so I went to the go again and asked for f(free)t3 and ft4,and said that I would pay. It was about £75, I think, apparently not offered by the NHS.

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