How long off NDT before blood test for levels to return to non supplemented levels

[Kitkat1982]

Hi,

I’ve been on NDT for a few years self treating due to lot of hypo symptoms, things have got worse and I’d like to know what levels are now without treatment. How long do I need to be off NDT to see this?

[Beau55]

I was in a similiar boat to you and had to start from scratch with a new Endo. She advised 6 weeks for things to settle and TSH to catch back up but obviously things would keep spiralling from there. Seems about right as we often wait 6-8 weeks for bloods to catch up. However, this is obviously different for everyone and changes may be seen before or after then depending on how much T4 you have etc.

This did leave me in a bit of a pickle and it is unnecessarily cruel to be tortured for that long if you are hypo and already undergoing symptoms. Are you thinking of getting a baseline or are you trying to get an ‘official diagnosis’?

[Kitkat1982 in reply to Beau55]

Thank you. I’m trying to get an official diagnosis, I may have hypopituitarism going on, my cortisol is low too. I already have to go off hrt for further cortisol testing so don’t really want to mess myself up further by stopping NDT but I’m going to see a private endo and would like to see whether my levels now are enough to get a diagnosis. I had tsh tested on nhs in November and my tsh was at 1.8, last time test it was 0.0 something so I’m interested what it would now be without treatment and whether enough for diagnosis. I upped my NDT but then ended up with t4 too low and t3 slightly high so was told on a different thyroid forum I need to take t3 and not NDT.

[pennyannie in reply to Kitkat1982]

On NDT you dose to the relief of symptoms and not a blood test result or range.

Your TSH will likely be low suppressed - your T4 likely much lower than when on T4 monotherapy and you track on the T3 and this should be proportionately higher than when on T4 monotherapy.

My T3 and T4 literally swopped places to when on T4 monotherapy in that my T3 went from 25% to 110 % and my T4 went from 110% down to 25% and I felt fine and have stayed on the same and it's now 5 years later.

No thyroid hormone replacement works well until your core strength vitamins and minerals, those of ferritin, folate. B12 and vitamin D are up and maintained at optimal.

[Kitkat1982 in reply to pennyannie]

in this group I’m in, they advise to dose based on blood results. But some of my hypothyroid symptoms had returned too. My t4 was always sat at 16/17 before and now it’s 13. But I’m still having hypothyroid symptoms so something still isn’t right. I keep all those vitamin levels up, my ferritin has slid down a bit and so has folate I think so need to bring them back up although not low, just not optimal. Do you know what optimal folate is?

[pennyannie in reply to Kitkat1982]

I now aim for a ferritin of around 100 : folate 20 : active B12 75++ and vitamin D around 100 :

NDT does take time to settle in and once the right dose for you - in that if you take any more NDT you feel as though you are going backwards - I found symptoms continued to improve over several months - the last one being my weight loss of around 2 dress sizes some 18 months after starting self medicating.

Do you track twice daily your blood pressure, pulse and body temperature ?

My blood pressure and remained stable but I tracked my temperature rise from 35.4 to 36.6 where it is today some 5 years on

[Kitkat1982 in reply to pennyannie]

thanks. What’s the folate range you’re using there? Mine came back at 36 recently.

I took it for about a year and a half/2 years where it was optimum and I lost the weight and was back to normal but then it’s started sliding again. Unfortunately none of that would help at all because I have pots with high heart rate and low blood pressure and am now medicated for both with result sometimes it’s too high. And my body temperature is doing strange things at the moment too possibly related to low cortisol.

[pennyannie in reply to Kitkat1982]

I've never seen a top end range for folate just going by what I read on here and other places :

[Beau55 in reply to Kitkat1982]

What we’re your bloods like prior to self medicating?

sounds very similiar to me - my TSH never rose but my T4 was scraping the bottom of the range. I also had very low cortisol levels and ended up self medicating out of desperation and got well doing so until last year when everything got very messy. After 6 weeks off NDT my TSH went from 1.8 to 2.8 (nothing huge), my T4 dropped from 16 to 12.8 and my T3 was at 3.6 (sample prior to stopping NDT had an error so no idea annoyingly what it was before).

I found a doctor from the thyroid uk list and she ignores TSH but looks at ft4/3 along with symptoms and other signs. I had high prolactin, low ferritin and low folate so she was happy to diagnose and treat with armour due to my levels.

[Kitkat1982 in reply to Beau55]

My tsh just before was 1.8 but it had been at 2.8 before, it seems to swing around between those two. My t3 was 5 and my t4 about 16. Now my t3 is 7 and my t4 is 13. If my tsh is already 1.8 on NDT when it was 0.04 or something before on this dose, it must be at least 2.8 unmedicated. I also take adrenal cortex for my adrenals because they’re low all day but things have got worse now. Does hypothyroid cause low ferritin and folate then?

[Lalatoot]

It took 3 months for me to become very ill with TSH into the 40s. It has taken me years to recover from that experiment.

[Jazzw]

How much NDT do you take?

If it’s a decent amount, you might find that your FT3 and FT4 levels tank long before your TSH starts to rise again. And that’s a problem, because TSH isn’t a thyroid hormone, it’s a pituitary hormone which tells the thyroid to make T4 and T3.

Also, if you’ve taken NDT for a while, your thyroid will most likely have shrunk, so it needs TSH to rise, to stimulate it to get bigger and be able to cope with producing some thyroid hormone again.

Probably not what you want to hear. But it’s likely stopping cold turkey will make you quite poorly within a matter of weeks—yet your TSH may stay suppressed, which will confuse the average GP.

[Kitkat1982 in reply to Jazzw]

Thank you.  I was on 120- 180 mg of NDT for a couple of years and had optimal levels and hypothyroid symptoms gone with my tsh the last time I tested it at 0.0 something so was suppressed then but then was getting hypothyroid symptoms again and happened to have a tsh test on the NHS which showed it was 1.8 so not that suppressed. 

So I upped my dose gradually to 320mg which I was on for about 2 months and then tested my levels again this time free t3 and t4 too with medichecks and my tsh was 0.45 but my t3 was slightly too high and my t4 too low. So on another thyroid forum I was told my t3 was pooling (not a medical term but their term for it) and my reverse t3 was too and I needed to half my NDT and then start on t3  and take both. 

So currently I’m only on 80mg as of a week. I’ve potentially got hypopituitarism going on because I’ve got low cortisol which I’m waiting for more testing and lots of hypoglycaemia episodes and do have a history which matches with Sheehans so I’m waiting to see private endo for further investigations so will ask them about thyroid. How do you go from where I am to trying to get diagnosed If you can’t come off NDT completely and if your tsh is suppressed? Or I just need to capture my tanking t3 and t4? 

[Jazzw in reply to Kitkat1982]

So on another thyroid forum I was told my t3 was pooling (not a medical term but their term for it) and my reverse t3 was too and I needed to half my NDT and then start on t3  and take both. 

There isn’t any such thing as pooling. For a while a few years ago, there was a popular theory about pooling and reverse T3 blocking thyroid hormone receptors but it’s been shown to be incorrect—that isn’t what happens at all. However, it is possible that you might have a degree of thyroid hormone resistance, meaning that even though when you do have good levels in the blood, it's doesn’t necessarily get into the cells.

Just so I understand, did you starting upping your NDT dose on the basis of a one off NHS TSH result? Did you have FT4 and FT3 results at that time too? If so, what were they? Is it possible you could have been taking something with biotin at that time (often part of Vit B complex) because that can interfere with the TSH assay and give you an incorrect result.

If I’m honest, I think you were given some pretty duff advice by whoever it was who said to halve your NDT and add more T3. Though 320mg NDT is rather a lot, it’s true.

[humanbean in reply to Jazzw]

there was a popular theory about pooling and reverse T3 blocking thyroid hormone receptors

I think diogenes mentioned a few years ago that Reverse T3 never blocks T3 receptors in the cells. It turns out that cells have different receptors for T3 and Reverse T3, and the body doesn't get them confused and never tries to jam a Reverse T3 molecule into a T3 receptor.

[Jazzw in reply to humanbean]

It would definitely be a design fault if it did, wouldn’t it? And yet such is the nature of us being desperate for answers when we’re feeling poorly, it all sounded quite plausible at the time.

[humanbean in reply to Jazzw]

Yes, I remember that. I think STTM still continues to spread this idea, but I could be wrong.

[Kitkat1982 in reply to Jazzw]

If you do have resistance, how can you fix that?

I upped the NDT because of the nhs tsh blood result and because some of my hypothyroid symptoms had returned and I wasn’t feeling good anymore like I was a couple of years ago when I was optimal. I intended to do a medichecks t3 and t4 test a couple of weeks after that (because nhs didn’t test) but was then really Ill for 8 weeks with pneumonia so left it later than I intended to test. In this other group, they say patients find their tsh needs to be lower than 1 to be optimal, when I was feeling optimal mine was.

No biotin, I know it can interfere and so came off anything that can interfere first.

[tattybogle]

Hi Kitkat humanbean / Jazzw

radd had a very good attempt at explaining the complex processes involved with T3/ reverseT3 ( which it seems is still be incorrectly described as 'T3 pooling' by STTM etc )

in this post .. healthunlocked.com/thyroidu... with the help of a diagram from one of Tania Smiths ThyroidPatients. Canada articles

[Kitkat1982 in reply to tattybogle]

thanks, I will check it out.