Stopped taking NDT cold turkey, was this an ign... - Thyroid UK

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Stopped taking NDT cold turkey, was this an ignorant mistake?

Lynndeb profile image
Lynndeb

Hi Everyone, My ME/CFS doctor suspected that I had subclinical hypothyroidism last winter and so I began to take 1 grain NDT daily, which I gradually built up to 1grain am and .5 midday. Although I felt no improvement in my health and I felt no negative effects from taking it.

I was just about to get some more private tests done when I had to go to A&E just over 2 weeks ago because I felt very ill (severely dehydrated despite drinking over 2 litres water, tingling hands/feet, cognitively challenged, slightly unsteady and a feeling of malaise). They gave me fluids and told me that they weren't sure what my problem was other than my sodium being quite below range, in fact had it been a point lower they would have insisted on keeping me in.

Had more bloods done and sodium ok, but last week my gp rang and explained that they'd heard from the hospital that I'm hyperthyroid, and so I thought 'Oh no I'd better stop taking NDT quickly, which my gp doesn't know about!' Maybe I shouldn't have stopped taking them so abruptly?

My hospital bloods were Free T3 is 9.4 (range 3.1 - 6.8), Free T4 is 23.2 (range 11.0 - 22.0) and TSH is 0.01 (range 0.27 - 4.20). I had some more done yesterday so I'll have the results in a few days.

I never feel close to feeling well, but my body just feels so unhappy now and it's hard to describe my symptoms, hence my question about my stopping my NDT.

I thank you and look forward your thoughts...

33 Replies
SlowDragon profile image
SlowDragonAdministrator

It takes minimum of 6 weeks, possibly longer for bloods to return to pre-NDT levels

I think your test results are unlikely to have returned to "normal" and you will need to tell GP what you were doing

Bloods will need retesting 8-10 weeks after no treatment to get true results

You also need vitamin D, folate, ferritin and B12 tested, plus both TPO and TG thyroid antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, or on NDT make sure to take last dose 12 hours prior to test

At A&E test, how long before was your last NDT dose?

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Lynndeb profile image
Lynndeb in reply to SlowDragon

Thank you very much for your quick reply.

I'm sorry but I'm confused about how I could possibly have sub-clinical hypothyroidism for which I took NDT and then very quickly be diagnosed as hyperthyroid. Could taking the NDT have pushed me into hyper?

When I had the A&E blood test it could have been anything between 16 and 10 hours after my last NDT.

When I saw my gp post A&E he referred me to an endo and prescribed 5mg Carbimazole, which I haven't begun to take yet. I had more bloods done this Monday at 9am on an empty stomach and I thought it better to have a truer reading without the Carbimazole. But as you say, I'll still have NDT in my system, and so maybe when that's out of my system I'll be more hyper than the A&E bloods suggest. It's all so confusing and I'm sorry if I'm acting like a dimwit!

I did purchase the Blue Horizon plus 11 but I received it just before the A&E episode. I realise that you can't advise medically, but personally would you not take the Carbimazole and wait for five weeks for the NDT to leave my system before using the Blue Horizon in order to get a true reading?

Thank you, I appreciate your comments regarding vitamins, food intolerances, iron panel etc.

greygoose profile image
greygoose in reply to Lynndeb

Taking NDT couldn't have 'pushed you into hyper', no. It doesn't work like that. But, you could have been taking too much. Difficult to tell without previous blood test results. Do you have your results from when you were diagnosed?

The other possibility is that you have Hashi's. Do you know if they tested your antibodies? Was anything ever said about 'Autoimmune Thyroiditis'?

Lynndeb profile image
Lynndeb in reply to greygoose

Thank you greygoose. Yes, I'll dig the results out and post them. I'm sure my antibodies were checked and nothing showed up, and no-one has mentioned Autoimmune Thyroiditis.... I won't be able to do it until the morning, but I do greatly appreciate your help and SlowDragon's.

greygoose profile image
greygoose in reply to Lynndeb

You're welcome. :)

Lynndeb profile image
Lynndeb in reply to greygoose

Thank you for clarifying that.

I've found the tests I was diagnosed on by my ME doctor. In 2015 my TSH was 2.1 (range 0.55-4.78) and T4 was 12 (range 9.0-23). My ME doctor commented on how low my lab's reference range was and that I may feel much better running at the top end of the range. I posted for the first time after receiving these results and began taking selenium.

In 2017 my TSH was 1.7 (range 0.55-4.78) and my T4 was 13 (range 9.0-23).

The ME specialist said this was typical of secondary hypothyroidism which is seen in ME/CFS with low T4 and no TSH response.

I also had a bluehorizon test in 2017 which showed my Free T3 was 4.07 (range 3.1-6.8) and my Reverse T3 was 25 (range 10-24).

No-one has ever mentioned 'Autoimmune Thyroiditis'.

This is so complicated and I'm very grateful for the knowledge you are all sharing. I've had CFS for many years and over the past 3 years I've been diagnosed with other serious chronic illnesses and although I've educated myself on each one, this one is taking all I have to even begin to understand, although I will learn.

This is such a brilliant, knowledgeable and generous support group, and I know you are all feeling awful and often fighting to regain your health with a multitude of illnesses, and yet you take the time to help. Thank you.

greygoose profile image
greygoose in reply to Lynndeb

My ME doctor commented on how low my lab's reference range was and that I may feel much better running at the top end of the range.

Which range was he talking about, there? The FT4 or the TSH? Both of them look like pretty standard ranges, the ones we see most of.

I think you ought to get your antibodies tested, because it's beginning to sound more and more like Hashi's. But, that's something doctors know nothing about.

However, if your ME specialist thought you had Secondary Hypo, did he do anything about testing for it? It certainly is a possibility. What was your FT4 in that BlueHorizon test in 2017?

Lynndeb profile image
Lynndeb in reply to greygoose

Sorry, she didn't say, although she did say her lab's range was 12-22, so possibly she was referring to T4.

Yes thank you, I've just made an appointment for 08:40am testing next Wednesday, and it's the bluehorizon plus 15 so that should answer lots of questions.

Good point, no they didn't, it's quite common in ME patients so she maybe saw a pattern. I can't remember why I just asked for the 2 bluehorizon tests but I do only have Free T3 and Reverse T3.

I received this email a little while ago regarding Hashi's of all things, I don't know if it's of interest to anyone: instantteleseminar.com/Even... - I shall certainly be listening!

As soon as I get my results I will make a new post and hopefully they'll shed some light on what's happening...

By the way, I've just read your profile, and I shall be reading many of your posts! I sincerely hope your health improves greatly and I'm hope your hair can now be likened to Rapunzel's!

greygoose profile image
greygoose in reply to Lynndeb

Ha ha! No! more like Uncle Fester! No, that's an exaggeration. It has grown a little, it does now cover my scalp, but it grows so slowly. I can't imagine I'll ever have a good head of hair again.

So, a range of 12 - 22 would be FT4, yes. But, having your result would only make you well if you converted it well to T3. And, without an FT4 and FT3 tested at the same time, we can have no idea how well you convert.

I don't think a BlueHorison 15 test will give you much clue to a pituitary problem. There are precise tests to be done. But, it doesn't sound like the ME doctor knows that much about it. Secondary Hypo would present with low Frees, but also low TSH - because the pituitary isn't capable of producing enough TSH to stimulate the thyroid to make thyroid hormone. So, you need all three tested at the same time. In the tests done by your ME doctor, I wouldn't have said that your FT4 was low enough to suggest Secondary hypo. It's just a pity that she didn't test the FT3 to give a clearer picture.

I don't think that link would interest anyone. It looks like one of the scam thingies we often see. I liked on the video but I really don't think I have 4 minutes to spare to wait for it to begin! If they really had anything interesting to say, they would have said it straight off. I would just delete it, if I were you. :)

Lynndeb profile image
Lynndeb in reply to greygoose

Oh my gosh I'd forgotten all about the Adams Family! The illness is bad enough, but to then be kicked in the chops by hair loss is so unjust!

Thank you very much for sharing your knowledge, it all still sounds like Cantonese to me, but my goal over the weekend is to begin to understand this complex little gland. I have an early am appointment next week for my bloods, even though I now understand that they might not reveal the whole story, and I will post them in a couple of weeks.

Ah ok, video deleted! :)

greygoose profile image
greygoose in reply to Lynndeb

Well, I know someone that looks like Uncle Fester, so I can't forget him. lol To be honest, hard as it is, there are worse things than losing your hair. I acquired a great collection of woolly hats, while it was regrowing!

Take it easy with the studying. Brain work uses up a lot of calories, and you need those for conversion. Slow and steady is the best way to take it all in. And, remember, research is always teaching us new things. So, we have to be supple in our approach. What was true yesterday may not be tomorrow. And we have to keep up with it, because it's a certainty that doctors won't! :)

Lynndeb profile image
Lynndeb in reply to greygoose

Thank you for your wise, much needed kindness :)

greygoose profile image
greygoose in reply to Lynndeb

You're very welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply to Lynndeb

If you didn't tell medics you were taking NDT they would assume results suggest you are hyperthyroid

Your probably not hyperthyroid, but your results suggest you are taking too much NDT, or you have Hashimoto's and were having a Hashimoto's flare, or you have low vitamin levels

Or a mix between of all three of these

If you don't get thyroid antibodies tested by GP request they are done, plus vitamins. If can't get tested on NHS then you need to use your Medichecks kit. Ideally you would wait until 6-8 weeks off medication but you may need to test earlier to see what's going on

Lynndeb profile image
Lynndeb in reply to SlowDragon

Thank you, I'm going to have my private test done next week if I can get an early am appointment.

My vitamins were last tested in Feb when everything looked very healthy, especially my B12, which was above range due to supplementation. I appreciate all your help!

If your over the range results are as a result of a Hashi's antibody attack, those antibodies could stop attacking at any time and thyroid hormone levels might drop quite quickly now that you aren't taking any NDT.

If that is the case then waiting 6 weeks while you just get more and more hypo might be quite difficult.

Lynndeb profile image
Lynndeb in reply to humanbean

Thank you very much, I haven't had my antibodies checked for about 3 years, so I'm now going to try and get an early am test next week. I certainly don't want to feel any worse!

I think a lot depends on how long after medication you were tested. If you took your medication and were tested shortly after then you would present a very inaccurate high reading. You really need to tell your GP the sequence of events. How much NDT did you take? It's normal to start very low but again if you've taken too high a dose then your body is likely to have a reaction. With all thyroid meds we start low and build up but with NDT or adding in T3 we need to be very careful as the reactions can be more marked so we always go with caution to enable more time for our bodies to get used to the T3 which is an active hormone.

Lynndeb profile image
Lynndeb in reply to silverfox7

Thank you. I was tested between 10 and 16 hours after I took NDT. I built up slowly a few months ago beginning with 1/2 grain on rising for 2 weeks, then 1/2 grain upon rising and 1/2 grain midday for 2 weeks and then 1 + 1/2 grain daily. I monitored my pulse and BP and both were good, although recently my resting pulse has increased, but still ok. I realise now that I should have been tested sooner.

silverfox7 profile image
silverfox7 in reply to Lynndeb

I think we may be should be testing more but it. An work out expensive when we are starting out. I went up to 3 grains when starting out but timed my start to fit in nicely with seeing my Endo and we found it was too high although I wasn't feeling too bad-just new I was t right. He dropped me down to my correct dose so things have gone well since. Having said that I was at the top of the range so he asked if I would try dropping down a little so I've tried it but don't feel as good so I'm thinking of putting it back up but other things have been happening as well which may not be helpful so trying to stay with it a bit longer to be sure!

Lynndeb profile image
Lynndeb in reply to silverfox7

Yes testing is obviously necessary, but private testing as you say is expensive. I'm really glad to hear that you're feeling pretty good at the moment and I do hope that continues!

silverfox7 profile image
silverfox7 in reply to Lynndeb

Thank you! 2 things have flashed through my mind as I've read more of your replies etc. When looking at results and ranges we get used to where our own are in our machines range but we should also be looking at there in the range it is like 50% or 80% for example then if we get another range like Medichecks we need to look at the percentage our reading is in that so then we can do a true comparison. Also try to get labs always done at the same time as well as that's another variable that. An cause confusion. My Endo asked me to do my bloods a week before I see him and do I turn up at the hospital as soon as they are open to testing and so have always been in the first 30 mins though I appreciate it's not always that straight forward.

Just realised the second point. Once on medication for low B12 then retesting isn't accurate, I understand you need to be off it a few months to get an accurate figure. My results can back says high and then some reasons why that may be and the last reason was -taking B12 medication

Lynndeb profile image
Lynndeb in reply to silverfox7

Thank you, that's very interesting about the B12, which I was unaware of. And I think my brain is understanding what you are suggesting I do when reading tests done in different labs, and yes it does make sense to get them done at the same time. My A&E tests were done at about 10pm and my private tests are being done next week at 08.40, so the results will be interesting. I hope you have a good weekend!

Setting aside the thyroid issue for a moment, it strikes me that your symptoms are also consistent with Vitamin B12 deficiency and I wonder whether your levels for this have been checked? You need to be at the higher end of the range as lab ranges are often set too low at a level where deficiency can cause cognitive problems. If you google Sally Pacholok you can find a good Youtube video etc about Vit B12 deficiency if you want more info. I hope your health is restored soon.

Lynndeb profile image
Lynndeb in reply to Healthseeker

Thank you very much. I've been working very hard to increase my B12 by supplementation and the occasional set of booster injections. They were quite above range in February, but it hasn't been checked since then so I'll do that again with the Blue Horizon test shortly. Thank you for sharing the information regarding Sally Pacholok, and thank you very much for your good wishes. I wish you too, the very best of health.

Hello everyone, I wanted to thank you all for your help so far. I'm sorry I haven't got my answers together yet. My bloods were quite organised but I've succeeded in messing them up, and I just can't focus - I will do it ASAP!

Hi Lynndeb, I'm interested to hear. I have a similar situation as after taking NDT my TSH was suppressed (like yours) although my doctor didn't suggest I'd gone from hypo to hyper. I was being under medicated as (we think - we're testing now) my body hadn't had enough time to figure out how to properly utilize the NDT.

Lynndeb profile image
Lynndeb in reply to Mjames13

Hi Mjames13, That's so interesting and encouraging to learn your experience. It's all so complicated. Could you tell me how long you'd been taking it before you experienced the episode? Thank you!

Mjames13 profile image
Mjames13 in reply to Lynndeb

Hi Lynndeb - I had been treating for a little over a year but, my doc kept changing things in response to my labs. I'd get labs 8 weeks after a change to see how things were going and found that simply is not enough time for a body to adapt to a new dose and figure out what to do with it in order to maximize. In between that time, she pulled me off the NDT and put me on levo which was horrible. I feel like that put me back. Decided to go back on NDT and she held me at a super low dose for too long which did not make me well. Again testing after 8 weeks and saw my t3 and t4 were improving but my TSH was decreasing. Because of the decrease in TSH she decreased my NDT again (mistake) and I was held at an even lower dose. I finally had to put my foot down (based on so much of what I read here and other patient stories) and said I'd like to raise my NDT for a bit and then settle around 3 grains (based on symptoms of course - no palpitations etc.) and then retest after a month and then 90 days. I'm in that period of increasing to 3 grains (i'm at 2.5 and will increase another half next week) and then we'll see how things go.

Lynndeb profile image
Lynndeb in reply to Mjames13

Hi Mjames13 - Gosh what a journey, but thank you very much for sharing it with me. My homework for this weekend is the Thyroid and it's workings. I was diagnosed with chronic kidney disease last year, and today I've found a study confirming the close relationship that thyroid therapy for hypothyroidism has on renal function. It's just a huge jigsaw puzzle and I just don't understand that on the whole it's the patients who have to solve the puzzle!. I wish you the best of luck with your increase. Lynn

silverfox7 profile image
silverfox7 in reply to Mjames13

Results are read differently when taking NDT but not all doctors realise this! TSH will be suppressed, FT4 can fall, can is the important word, FT3 should be high in the range. So the downside of being on any form of T3 is that we can't see if we are converting well. The FT4 can fall a little or more so we can't compare the two as we can on T4.

Hi Lynndeb, I was in a similar position to you with CFS/ME with low FT4 where TSH does not rise in response. I believe this is what your ME doctor recognised as a common finding in ME. Dr Sarah Myhill writes about this on her site. With no treatment from the NHS I started treating myself with NDT around 5 years ago and have improved my life immensely. Good luck.

Lynndeb profile image
Lynndeb in reply to fixit

Hi fixit, thank you so much for posting this information. That's such brilliant news about your health improving, it's so nice to hear and may well it continue. I shall persevere!

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