Latest results - changed more than I expected - what to do next?!

[Tasker]

Dear forum people,

I've just got my latest test results from Medichecks, having found from my previous ones that I was over medicated. I reduced my dose and have retested, but the results have swung further down than I expected, and I think are now too low. Symptom-wise, I'm definitely feeling better than when overmedicated, but am not symptom-free. Results as follows:

Feb 2019, on 100mcg levo and 5mcg T3

TSH 0.661 (0.27-4.2)

FT3 4.86 (3.1-6.8)

FT4 15.4 (12-22)

Jan 2019, on 100mcg levo, 5mcg T3, and one Metavive 1 (= 1/4 grain NDT)

NB I got dose timings wrong with this test, taking T4 30 hours before and T3 24 hours before, so those levels would actually have been higher if the intervals had been 24 and 12 hours respectively.

TSH 0.02 (same ranges as above)

FT3 6.92

FT4 21.2

Oct 2018, on 100mcg levo

TSH 0.495 (ranges as above)

FT3 5.15

FT4 19.2

So you'll see why I'm a bit confused. My results on 100mcg levo + 5mcg T3 are worse than just a few months ago just on 100mcg levo. Does that mean my thyroid function is continuing to deteriorate? If so, chasing a moving target is going to make finding my ideal dose difficult! I guess many others have been through that as well.

I'd welcome advice on what to do next. Do I increase T3 to 7.5mcg? I can't increase levo without sourcing it privately as my GP won't increase it on these results - and they don't know about the T3 either. Or I could add half of a Metavive 1 (ie 1/8 grain NDT) back in.

Help! I don't know what to try. I'm just very surprised by how low these results have come out. Thankfully I don't feel as bad as they would indicate, but I'm worried that my symptoms will get worse if my levels stay low so I want to do something to boost those levels now.

I'd be very grateful for any advice, please. It's the forum's knowledge that has got me this far; thank you for your continuing support!

[greygoose]

Do you have Hashi's?

[Tasker in reply to greygoose]

Yes, I do have Hashi's.

[greygoose in reply to Tasker]

That could explain a lot. Levels do fluctuate with Hashi's.

[Tasker in reply to greygoose]

I had heard that but I suppose I hadn't realised the extent of the fluctuations and therefore the difficulty of managing dosing. Do the fluctuations ever settle down - ie can I expect some day to reach a steady state in terms of dose and wellbeing? And in the meantime, how best do I manage the fluctuations? I can't afford to do bloods every few weeks on an ongoing basis, and my symptoms of over medication were quite similar to my hypo symptoms...so it feels like fine tuning the dose is going to be tricky!!

[greygoose in reply to Tasker]

They will settle down when the thyroid is completely destroyed, yes.

As for managing the swings until then, you could try going 100% gluten-free, that might help calm things down a bit. And, it would be best if you can keep your TSH suppressed. But, yes, it can be tricky. You have to know your body very well to know when it needs more and when it needs less. There will be a lot of trial and error.

For the moment, you could try increasing your T3 a little, which will suppress the TSH. But, I doubt you need more levo. I don't know anything about Metavive. But I think you might just be complicating things more than is necessary, by adding that into the mix.

[Tasker in reply to greygoose]

Thanks, Greygoose. I've been strictly gluten free for about 15 months now (since shortly after diagnosis) so hope that is having some effect, and I'm supplementing vits and mins based on advice from Seaside Susie and others here. I'll try upping the T3 a little.

The fact that symptoms seem to lag behind levels as shown in blood tests adds to my confusion - it took a while for me to find out I was overmedicated previously, and now I'm feeling not to bad, but clearly my levels are not in a good place! Hopefully I'll get better at understanding what my body is saying and responding more quickly to changes.

I imagine there's no knowing how long it will take for the thyroid to be completely destroyed, and that that could be years away?

Thank goodness for this forum; the GP sent me away for a year between blood tests and I'd be lost if I couldn't come here for advice! Not that the GP was much help anyway...

Thank you for your help.

[greygoose in reply to Tasker]

You're welcome.

It's very rare to find a doctor that is any help. And, to be honest, they seem to be becoming more and more ignorant. We can't rely on them, we have to rely on ourselves.

No, you cannot predict how long it will take for the thyroid to fail completely. For one thing, you don't even know how long it has been under attack.

[Tasker in reply to greygoose]

True! The trial and error continues ☺️.

Thanks again.