A Return to NDT - what tests should I get? - Thyroid UK

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A Return to NDT - what tests should I get?

Glig profile image
Glig
9 Replies

2007 -2008 I had a total thyroidectomy for goitres that showed I had encapsulated thyroid cancer. I have had two does of radiation. Clear since. I have been on 150mg of levothyroxine since. After plucking up a lot of courage and with the Dr's agreement that he would test my blood levels - I switched from 150mg of levothyroxine to NDT. I had an initial blood test and then slowly built up the NDT as recommended. I was feeling fine and so much better until I hit 3 pills on NDT and then I hit 'pooling' . My blood pressure went through the roof and the Dr prescribed blood pressure pills. I stopped the NDT and sadly returned back to the Levo again. My blood pressure returned to normal.

How can I stop the 'pooling'? should I get my vitamin and adrenal/cortisol levels right first? If so - which tests do people recommend and which firm? There are a few on Thyroid UK to choose from. Or should I get everything tested and start from there?

Thank you for any help!

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Glig
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9 Replies
startagaingirl profile image
startagaingirl

Hi - just to aid my understanding, what do you mean by "pooling"?

greygoose profile image
greygoose in reply to startagaingirl

And, how do you know you were doing it?

StitchFairy profile image
StitchFairy

You say you hit 3 pills of NDT, but it's not clear what dose that was. Were they one grain pills? If so, that's quite a lot of T3 which could have caused the high BP etc. Did you try adjusting your dose down to 2.5 pills for example?

Glig profile image
Glig in reply to StitchFairy

I was on Nature -throid 1 pill = 9mcg t3 and 38mcg t4.

I built up 0.25 every two weeks and had no problems up to that point.

StitchFairy profile image
StitchFairy in reply to Glig

So did you try dropping back your dose, to say, 2.5 grains before taking the drastic step of going back to levo?

greygoose profile image
greygoose in reply to Glig

Did you not get tested at all, during your build-up to three grains? (9 mcg T3 and 38 mcg T4 = I grain. We usually talk about NDT in grains, that way, everybody knows where they are.) It's usually recommended to hold at one grain for six weeks, and then get tested. If you'd done that, you would have seen if the T3 was going to high.

Glig profile image
Glig

Pooling is when T3 goes high in the blood due to low iron or a cortisol problem. Symptoms include anxiety, panicky feeling, heart palps, higher heart rate, higher blood pressure. Dr took my blood pressure which was very high. I was dispatched to the chemist for the amlodipine pills on the strict instruction to take one asap.

StitchFairy profile image
StitchFairy in reply to Glig

I don't quite understand why you call it pooling. To me that sounds like being overdosed on T3.

silverfox7 profile image
silverfox7

Having made the transition back to NDT two years ago. I started my thyroid journey on it about 30 years ago, I got up to 3 grains and felt better than Levo but not as good as I was expecting but my body wouldn't let me take anymore. Thankfully it corresponded with my next bloods and I think results FT3 slightly high but Endo said to drop to 1.75. I did it gradually and I have to say he was right! It's so easy to go over as over and under symptoms are very similar so when ever I feel not quite right now I drop down by 1/4 one day in three and see how I feel then. With me it's not enough to risk me feeing a lot worse but enough to say if being slightly over is the problem. If that looked the case I then alternate the days till I finished D something that seems to suit then hold it till testing time.

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