On LDN and these are my current bloods: advice please?

[Schenks]

Just back from labs. The doctors (the one who has known me for years has left and the twinkies being trained on their GP rotation no doubt) want me to repeat the bloods in 3 months. As if. Here's my dilemma. My blood results, taken at 9am, fasting and without thyroid meds for 24 hours Levo and 36 hours NDT are as follows:

Serum free T4 level

: 18.8 pmol/L Range: 11.5 - 22.7

Serum free T3 level

: 5.4 pmol/L Range: 2.5 - 5.5

Serum TSH level

: 0.05 miu/L Range: 0.3 - 5.0

Is the T3 is a bit high, do you reckon? I have been taking a mix of Levo with NDT for yonks because the T3 levels were very low. But it looks as though, on about 90mcg of Levo (3 and a half tabs of 25mcg) and 1/2 grain of NDT, my bod is motoring. Now I think that taking Low Dose Naltrexone is potentially helping my conversion of T4 to T3. so I'm thinking of reducing the NDT by 1/4 grain (to roughly 16mcg) and upping the Levo to 4 and a half tabs, about 112mcg.

Originally I was "stable" from 1984 to 2007 on 125mcg, meaning the TSH was in the range the lab was happy with. However, from around 2004, under extreme duress that lasted for years (nowhere near as bad now) the lab rats still maintained I was in the normal range despite my becoming increasingly exhausted, weak, arrhymic, thin hair, no eyebrow wings, weak, foggy, word-loss, anxious and sodding fat despite whatever I tried. But I was far more functional than when I got diagnosed with ME in 2007. So my thinking is, if the LDN is now helping my body regulate itself on Levo again, perhaps I should slowly switch to Levo alone.

To be honest I am rather tired of trying to work all this out at the moment – and the ME certainly doesn’t help, although it is not as desperate as it was. I still tire easily, can't stand for longer than minutes, the pain is sometimes sickening and the weakness is scary. It's hard to differentuiate between the ME and thyroid. But it seems as though the ME symptoms are becoming more Fibro - that my thyroid meds are winning on one level. I do hope this makes sense!

I would appreciate some opinions from you expert patients ouyt there. Going to lie down for a buit. with a glass of wine. And a bit of chocolate.

[shaws Administrator]

The blood test the NHS use for thyroid hormones were introduced for levothyroxine alone. Therefore as you also take NDT (this contains T4, T3, T2, T1 and calcitonin) you will have different results than being on levo only (i.e. T4).

If you feel well I think you should just relax and be content that symptoms are relieved.

[Schenks in reply to shaws]

Thanks, Shaws, but I'm having problems with heart rate, chesty pains through to my upper left back(apparently not really heart related, but still undergoing tests), waking up early (about 3am this morning) with fast heart rate and anxiety... not actually well-well.

[SeasideSusie Remembering]

Schenks

What was the reason for leaving 36 hours between last dose of NDT and blood test? It should be 8-12 hours to give you a level that reflects the normal circulating amount.

So as you have a top of range FT3 with such a long gap, your normal level if you'd left the correct amount of time would be over range and maybe quite a bit higher. That suggests that you are overmedicated with NDT, you might not even need it if your conversion has improved considerably since the addition of LDN.

[Schenks in reply to SeasideSusie]

Thanks for the reply, Suzycreamcheese. Around 36 hours was because I take the 1/2 grain at night, so left it off the night before the morning blood test. Yonks ago I read on here that waking early in the morning with anxiety is probably because of low T3, the body needing adrenalin to 'wake uo' the systems, hence the anxious feelings, and that taking T3 late would alleviate this. It's only just occured to me to look at being over medicated since I've always fought the under-medicated scenario. I realise, reading your reply and Scrumbkers, that I need to stop the NDT and retest, probably in 3 months as the doctor suggests.

I think I'll take the Levo back up to the original maintainance of 125mcg, dropping the NDT altogether. Any suggestions on what timescale with what dose to swap each?

[Schenks]

Thanks, Scrumbler. I'm rather annoyed with myself for being so dumb right now, TBH. I totally forgot about T3 elimination in 8 hours. Well over-medicated with the NDT.

I'd be grateful for your opinion on how quickly to drop the NDT, and pick up the Levo. I'm thinking of going back to my original dose, which before having to go on the NDT journey to now, was 125mcg. So since I'm taking 1/2 grain NDT, which at around 32.5mcg of thyroxine with about 4.5mcg of T3, do you reckon i could just drop the NDT and up the Levo from about 90mcg in a oner? I've kind-if asked Seasise Suzy the same question, but as I'm writing I'm thinking it through.

Unfortunately I wasn't able to get back to this discussion before I took the bl*** NDT last night, which I now realise might be why I gave up trying to get back to sleep at 4am and picked up the discussion!I now think I know the reason for the bl***y palps! And the chest pains. From being a pretty clued-up patient, no wonder the docs would be rather p'd-off with me. I'M p'd-off with me.

[ShelWhitt]

Sounds good!

[Schenks in reply to ShelWhitt]

Which bit?

[ShelWhitt in reply to Schenks]

The wine and chocolate!

[Schenks in reply to ShelWhitt]

[Schenks]

Plan? Plan? A b****y road map, after farting around in the dark! Thank you - yes. I'll up the dose of Levo to 112mcg and retest. This LDN has taken a couple of years, but I think it's enabling my bod - which has always been very fit until the ME - to roll back the damage very slowly. I'm rather amazed, actually. I took the LDN for many months, felt a little less bleuch over time but never thought that my conversion capability might start to come back on stream. I think I might have a story here! But I'm grateful for the input. When there's so much going on it's really impossible to see the trees, it's so dense a wood. You've highlighted the path in words of one syllable. Mixing metaphors being just one of my fortes! I'll be back...

[Schenks]

I love that one! Never heard it before - I'm appropriating it.