Bad experiences on NDT - been trying T3 only, b... - Thyroid UK

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Bad experiences on NDT - been trying T3 only, blood results as requested.

TheDave profile image
14 Replies

Hello, so I came on here earlier asking where I could order 25mcg T3 from and I was asked to give some info on why I wanted to source T3 and asked for my blood results-

the latest results sent by my endocrinologist are:

TSH 0.01, T4 27.7, T3 11, ferritin 69, B12 766 and Vitamin D 66, i've had a full iron lab done but I can't find it and I need to try and get it from my endocrinologist's secretary if possible.

I've been sick for a very long time and have been struggling to get along with NDT (1 grain naturethroid 65 mg) with very little improvement of symptoms (cognitive issues, sleep/digestive issues, etc) but very often a worsening of symptoms when trying to increase - night time digestive problems (burping, diarrhea). Very often coming off the meds helps before symptoms worsen quickly (a day or so). I've had complete remission of my symptoms twice so I know they are thyroid related - once on T4 only when I first went on medication years ago and then again on T4/T3 therapy when I got to see an endocrinologist (I paid myself I can't get a prescription). In both instances I temporarily felt well before starting to feel sick again over the course of a week.

My endocrinologist told me last to try 1 grain of NDT which I can just about handle (but would probably be better dropping to a 1/2), and take 25mcg T3 split into two halves - afternoon and say evening. But this was too much and made me ill. I decided to go a bit off track and try T3 only 25mcg and split it into eighths- i've been doing ok and actually had a few good nights but i've kind of being winging the dosage- not taking more than 25mcg a day so I've got to split the dose up in smaller amounts to get by, I've found I need to take some before bed which helps a bit but I want to see if increasing the dose helps because like I said these symptoms went away before.

The other night however I was really stressed before bed and this really messed me up, so stress looks like its affecting me - i've had an adrenal stress test done by genova diagnostics in the past requested by Doctor Peatfield who I also saw that showed my cortisol pattern was inverted? Low in the morning, raising through the day and high at night. I don't know what you make of that or whether you recognise or have used such tests.

Also I should mention- i've been taking my temperature, blood pressure and pulse and one thing i've seen since going on T3 only is my pulse has gone down - sometimes it could be as high as 120 (standing) in the evening and my systolic blood pressure readings generally have dropped across the board.

Thanks, sorry for the long post

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TheDave
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14 Replies
Lora7again profile image
Lora7again

Have you got the ranges for your blood tests please? If you are in the UK I think you are over range but I cannot be sure without the ranges.

Lora7again profile image
Lora7again in reply to Lora7again

I see you are in Germany ... I don't know what the blood ranges are there.

greygoose profile image
greygoose

I agree, we need the ranges. Your FT3 looks very high - do you have Hashi's? - but impossible to say without the ranges. Also, your vit D and ferritin look low, and that could be why you're having problems with NDT. All nutrients need to be optimal to do well on NDT.

When were those labs done, and what were you taking at the time?

I decided to go a bit off track and try T3 only 25mcg and split it into eighths

Sorry, but that sounds insane. 25 mcg is not a huge dose to begin with. Divided into 8 makes it 3.125 mcg per dose, which is next to nothing. And, taking it 8 times a day means that you will be taking some doses close to food and other supplements/medication you may be taking. This will reduce absorption, even though T3 is more easily absorbed than T4. So, how much you actually end up getting into your blood is anyone's guess. Probably not enough to make you well.

i've had an adrenal stress test done by genova diagnostics in the past requested by Doctor Peatfield who I also saw that showed my cortisol pattern was inverted? Low in the morning, raising through the day and high at night.

That's a classic adrenal fatigue pattern. But, once again, we would need to see results and ranges to be able to comment in more depth. Was anything done about it at the time? And, when was it done? I'm afraid we always need all the numbers - dates and doses, results and ranges - to be able to help. :)

shaws profile image
shawsAdministrator

I'm very sorry you're having such a struggle. Do you follow this method when getting a blood test for your thyroid hormones?

1. The earliest possible blood draw, fasting (you can drink water).

2. Allow a 24 hours gap between your last dose and the test..

If not, the results could be skewed.

1 gr of NDT has an effect of 100 mcg, plus the 25mcg of T3 is also around 100. So you are taking 200mcg of thyroid hormones altogether. it might be a bit too much and a small adjustment may work. Many doctors only look at the TSH result to try to relieve symptoms and may adjust up/down according to the result of the TSH but rarely test FT4 and FT3. TSH is from the pituitary gland and rises if thyroid gland is failing. The aim is a TSH of 1 or lower and FT4 and FT3 in the upper part of the ranges.

(I am not medically qualified but many on the forum do have difficulties finding a dose which relieves all clinical symptoms. Those members who've had similar problems have been able to find a way through the maze).

The following link is by the scientist/doctor who invented an NDT which didn't need a prescription and his link I think will be helpful to you. He'd advise a one daily dose but the patient had to begin with a small dose and gradually increase every two weeks by considering our symptoms and increasingdose by 1/4 tablet until symptoms resolved. He was also an adviser to Thyroiduk.org.uk .

naturalthyroidsolutions.com/

As you haven't felt any improvement at all I think it might be better starting again.

Many members on this forum also have had problems and it seems to me that many doctors are unaware of the reason, especially if they treat us according to the TSH alone.

I take 25mcg of T3 in one dose which isn't too high with one full glass of with ater and wait an hour before eating. This suits me but may not suit others. It is trial and error.

naturalthyroidsolutions.com/

Always get a print-out of your results for your own records and post - with the results - for comments. You can post for comments.

Doctor should also test B12, Vit D, iron, ferritin and folate - everything has to be optimal as deficiencies can also cause symptoms.

TheDave profile image
TheDave

OK, thanks very much for the responses, sorry for the late reply. Sorry. I'm in the UK, i'm using a VPN.

I'm not sure about the reference ranges, on my letter I just have the numbers- I have a blood results letter from october 2018 with the reference ranges as

TSH - 0.30 to 3.18

T4 - 13.1 to 21.3

T3 - 4.10 to 6.70

I'm not sure if these are right, and have probably changed since then?

I also have a "full"? Iron lab here (Oct 2018)

TIBC 62 (45 to 70)

Saturation 16% (25 to 56)

Iron 10 (5.8 to 34.5)

Ferritin 45 (30 to 400)

I don't have Hashimotos.

I'm taking Selenium 200mg, Vitamin D3 2000iu, a multivitamin - this one >> healthspan.co.uk/products/m...

Also a B Vitamin complex - this one >> amazon.co.uk/Solgar-Megasor...

Iron I was on is Vega Iron Bisglycinate 50mg >> amazon.co.uk/Vega-50mg-Iron...

I didn't cope well on the 1 grain and taking 50mcg Iron Bisglycinate which worsens night time symptoms quite a bit.

I didn't seem to experience any benefits from taking vitamins/minerals so I began to think that problems were elsewhere, I thought that I might experience a gradual improvement when i'm on medication but is that not the case but only when I reach the optimal dose? I could try going back on 1/2 again and try the 50mg iron bisgylcinate when before I had been on 200mg ferrous fumurate at that dose in the past and it messed me up.

How many doses should I try dividing 25mcg T3 into do you think then?

Being on 25mcg T3 has been ok, cognitive symptoms have worsened a bit but I've had better nights- I did do this once before and felt ill after the NDT had run out of my system but then realised I needed the T3 right before bed.

About the adrenal stress test result - I think Dr P just wrote that there was nothing wrong here, it was a long time ago though, like years ago.

I heard about using Adaptogens to lower cortisol, I don't think there's any mention of using them in Paul Robinsons book which I have been reading (I've read the first section) and wasn't sure of what to try, whether I really had high cortisol (dr P said my cortisol wasn't that high) or whether I should try taking zinc or phosphatidylserine to lower it. I can't find the box file that the test results are in so I can't give the results.

I've never fasted for a thyroid blood test but I do drink water a few hours before the appointment, it could be less than 24 hours after my last dose before testing since I tend to get up later.

Nurses usually have difficulty taking my blood and on a few occasions needed to come back to have it taken from my hand. I was on 1 grain plus the 25mcg T3 but very briefly - I was bad immediately. I will have a look at the Thyro-Gold, thank you. I usually wait 1/2 an hour before breakfast.

Anyway, thanks for your help.

Angel_of_the_North profile image
Angel_of_the_North in reply to TheDave

Did you remember to stop taking your B vitamins 7 days before the blood test as they contain Biotin? If you didn't, you might have either a false high or a false low test result

TheDave profile image
TheDave in reply to Angel_of_the_North

Yeah I have since I've been a bit irregular with the B Vitamins

Lora7again profile image
Lora7again

Your ferritin is too low and your vitamin D could be higher. I use a vitamin D spray which is easily absorbed on your tongue. I think we all need vitamin D at this time of year.

BB001 profile image
BB001

Paul Robinsons book The Thyroid Patients Manual is good. His way of taking T3 in line with your circadian rhythm (CT3M) is reported to get low morning cortisol levels up.

BB001 profile image
BB001

My understanding is that T3 is not considered to be affected by food. This matches with Paul Robinson's view.

Breaking down your T3 into at least 3 doses is advised by Paul.

TheDave profile image
TheDave in reply to BB001

Thanks, I will try that if I can find a reliable source for T3 (I have found one but I don't know if they are legit), I may have to try and go back on the 1/2 grain NDT and see if I can get my numbers optimal afterall but if that doesn't work then I will have to try that.

BB001 profile image
BB001

Naturethroid. Hmm that might be the problem. Patients are reporting that it's changed and it doesn't work now.

I'm on Thyro-Gold. It works. Remember you have to pay 20% Vat and £8.50 customs charge on top of the cost including postage.

BB001 profile image
BB001

Follow Dr John C Lowe's (who developed Thyro-Gold) advice. See the 3 free pdf chapters of his book provided on his website). Take on an empty stomach (at least 4 hours after food) and don't eat for an hour.

naturalthyroidsolutions.com...

TheDave profile image
TheDave in reply to BB001

I will read it, thank you.

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