GP's tonight - raging!

Loooooooooooooong back story. Into my eleventh year now of trying to get a diagnosis, but have now been on levo since June 2013 and am much improved.

I actually went to the doctor’s about episodes of chest pain not related to exercise. I’ve had a chest x-ray and an ECG, both of which were ‘normal’ and some fairly random blood tests, because she picked up that my TSH was ‘rather low’ last time it was tested.

I thought I had an agreement with the path lab, but they have let me down and only did TSH and FT4:

TSH<0.02 (0.35-6)

FT4 19.3 (9-26)

In April 2014, on the same dose of levo, my TSH was suppressed, my FT4 was 24.8 and my FT3 was 5.9 (2.8-7)

As far as the chest pains go, the GP has no idea what is causing them and cannot advise me what I should do when I get another episode. I appear to have all the symptoms of unstable angina, and that in itself is concerning, but that's another story.

On the thyroid front she put me in a position where I had to explain to her that I am taking 125mcg of levo, taking 100 on prescription and buying the rest myself from Germany. She was insistent that I was over-replaced and, when I pointed out that the FT4 is well within range, actually said they don’t look at that! She wanted me to reduce to 75mcg, which I already know from experience is not enough. She checked me for symptoms of over-replacement (I have none) and we ended up at stalemate.

She wanted me to reduce because my TSH is too low. I pointed out that it is always suppressed (even on 75mcg). I wanted her to give me the 125 on prescription, preferably with enough 25s that I could try 150mcg again (that was too much last time) as I have some return of symptoms.

Interestingly, as my FT4 has come down, so my cholesterol has gone up, from 5,2 to 6.2 in six months.

I’m tempted just to get some more levo and put my dose up and see what happens – or is it time to try NDT?

Anyone?

8 Replies

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  • Anstey, if your FT4 has dropped it's likely your FT3 has dropped too. Have you considered self medicating 6.25mcg/12.5mcg T3 instead of raising your T4 or trying NDT. I've not tried NDT so can't comment on that but T4+T3 combi suits me well.

    I'm surprised your suppressed TSH didn't prompt the lab to test FT3 but you can order a private FT3 test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

  • I'm sure my FT3 will have dropped and that this will explain the vague return of symptoms. I'm certainly not feeling as well as I did six months ago.

    I need to decide whether to supplement with Nutri Thyroid, add in some more T4 or try some T3, but I had such a bad experience with T3 that I am a bit wary of it to be honest.

  • Maybe better to up your T4 then. Bear in mind that 1 grain NDT contains 9mcg T3 and 1 grain is roughly equivalent to 75mcg-100mcg T4.

  • Nutri Thyroid is not a form of NDT. It claims to be hormone-free. There has been some talk of these 'hormone-free' supplements having some thyroid hormone in them, but it is uncertain how much, and whether it is a stable amount.

    The general view is that if you want thyroid hormone replacement then Nutri Thyroid or similar is not a good idea, you really need a proper Natural Desiccated Thyroid with a steady amount of hormone in it.

    Some people who really are borderline have found that they feel better with Nutri Thyroid, however, as a form of support for the thyroid.

  • I've taken Nutri Thyroid before and found it made a material difference to how I felt and to my test results. I have a bottle in the house, so I think I might try that for starters and see how I go.

    I suspect I am going to finish up having to self-treat because, after 4 GPs and 8 endos or endo registrars, I have yet to meet a doctor who understands how to treat thyroid disease and that is, I think, actually unacceptable.

  • Makes you Wonder why we bother to go to the doctor at all! Pfft. Such ignorance. You'd be much better of self-treating and looking after your own health. Read, read, read - knowledge is power. In this case, it has the power of letting you take responsibility for your own health.

    It's normal for your cholesterol to rise when your T4 decreases. High cholesterol is a hypo symptom. But don't worry about it. It is of no importance. What is important is that you get onto a dose of thyroid hormone that suits you.

    Hugs, Grey

  • You might consider putting a digest of your experiences on 'Patient Opinion' website. It claims to be interested in patients' experience of the NHS. One suspects it is looking for fulsome praise, but if enough thyroidees speak as we find it might give them pause for thought ...

    URL here: patientopinion.org.uk/

  • Thanks greygoose,. I'm not worried about the cholesterol. I took it as an indicator.

    I think it is interesting that although it has always been over range (sometimes more than others), no-one has ever offered me statins. Do you think that in their hearts they know?

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