In a quandary

[J972]

Hello,

Late this afternoon I had an unexpected call from the nurse practitioner at my dr’s surgery regarding my HRT. In the course of our conversation - she was lovely - I took the opportunity to speak about my undiagnosed hypothyroidism (I’ve posted about my results, both from private and NHS tests previously). Basically I explained how my ongoing fatigue (I’d literally been sleeping when she called!) and muscle/joint pain could be attributable to either that or the menopause and she seemed sympathetic to this. I told her how I was working hard to optimise my vitamins and minerals and she happily agreed to get those tested. I then asked if she’d be able to test my thyroid levels and she agreed to test my TSH, T4 and TPO antibodies.

I omitted to mention that for the last 3 months I’ve been self-medicating with Metavive and, more recently, Thyroid-S.

Blood draw is arranged for Tuesday 13th June at 9.10am.

My quandary is this: do I stop self-medicating in the hope that my levels are sufficiently ‘bad’ for my GP to diagnose and treat me? Do we know how long it takes for NDT to leave the system?

I’m really conflicted because a) I’m going to have to endure the return of symptoms (although I must say that I don’t feel anything like well yet), b) there’s no guarantee that my TSH/T4/TPO will sufficiently ‘play ball’ on the day, and c) even if they do, and I start on Levothyroxine, I’ve come to realise that that doesn’t guarantee an elimination of symptoms. Although, on the latter point, I realise that thyroid patients who thrive on Levothyroxine aren’t going to bother online forums, boasting about how great they now feel….

I’d love to hear your thoughts! Many thanks 🙏

[tattybogle]

13 th June just isn't anywhere near long enough to allow your TSH to return to 'whatever it will be naturally'...

(it's barely long enough for the 'added' T4 to leave the system ~ T4 has a half life of 7 days, but TSH takes it's own sweet time to decide to come back up again )

And taking anything with T3 in is likely to mean TSH goes lower than it would be if just levo was taken, meaning it can take even longer to come back up once you stop .

If you are wanting to do a test for the purposes of getting an NHS diagnosis .. then you'd probably have to stay off NDT completely for in the region of 6 weeks .. and quite possibly a lot longer .

... assuming TSH is going to go high enough to get an NHS diagnosis anyway .. presumably it wasn't over range and that is why you went DIY?

[greygoose]

How much Thyroid S are you taking? The more you take, the longer it will take to leave the system. But, as tattybogle says, the TSH can take an awful lot longer.

T3 leaves the body quite quickly, so, given the tiny amount there is in NDT, it could be gone by then. But, they aren't testing the FT3, are they. Which is a shame, because if that was low before, it will be low again next Tuesday.

And, what time of day is your blood draw? TSH is highest before 9 am, and at its lowest around midday.

The only thing that won't be affected by anything under your control would be the antibodies, so it might be worth doing the test just for those. However, remember that you can prove you do have Hashi's, but you can't prove you don't, because antibodies fluctuate all the time. One negative test does not rule it out 100%, but the NHS don't like testing it more than once. It is so very difficult for a lot of people to get a diagnosis!

[J972 in reply to greygoose]

tattybogle & greygoose

Many thanks for your responses. Having reflected upon my semi-panicky post I’ve come to the conclusion that I need to stick to my self-medicating guns for now. There’s just too many unknown unknowns (thanks, Rumsfeld) plus, as you both point out, 13th June is way too soon for my system to be free of NDT/TSH to return to normal/abnormal (I’m claiming that one 😊).

I’m in the process of migrating from Metavive to Thyroid S and I’m currently on 80mg of the former and 3/4 (three quarters) of Thyroid S. It’s still early days and the bonus blood tests in the 13th will be informative from that point of view. Plus, as you so wisely point out greygoose, the test might detect elevated TPO antibodies and my GP has previously said that she’d treat me based on that. I’ll cross that bridge when/if I come to it.

🤗