ndt thyroid s: I have been taking NDT for a... - Thyroid UK

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ndt thyroid s

Ysw70 profile image
27 Replies

I have been taking NDT for a couple of months now but feeling really tired I had my bloods done last week but not sure if I’m taking to much or too little. Any advice would be great thanks

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Ysw70
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27 Replies
SeasideSusie profile image
SeasideSusieRemembering

Looks like you're taking too much, FT3 is way over range. Was FT4 tested. When taking NDT one expects to see a low TSH, FT3 in range and FT4 lower in range than FT3.

However, timing of last dose has an effect on results. NDT should be split into 2 or 3 doses the day before the test and last dose 8-12 hours before the blood draw. Is this how you did your test?

Do you take Biotin, B Complex or any other supplement containing Biotin and if so did you leave it off for 3-7 days before the test?

Ysw70 profile image
Ysw70 in reply to SeasideSusie

yes I take vitamin b complex. I took 1.5 NDT before my blood test. I take 3 pills a day x2 times daily. Should I take less thanks for replying to me

SeasideSusie profile image
SeasideSusieRemembering in reply to Ysw70

Ysw70

So your results are probably inaccurate.. Biotin causes false results and biotin is in your B Complex so should have been left off for a few days before your test.

Also, taking your NDT before the test will have caused a false high FT3 result.

I would leave your dose as it is for now and repeat your test following our advice :

* Test no later than 9am

* Nothing but water before the test

* Leave off B Complex for 3-7 days before the test

* Split your NDT into 3 doses 8 hours apart the day before the test, take the last dose 8-12 hours before the blood draw.

Ysw70 profile image
Ysw70 in reply to SeasideSusie

Thankyou I have my dr phoning me tmrw about my results I’m not sure what to say to him as he thinks I’m still on leve when I’m taking ndt. Would a high dosage of NDT cause pain in my body and getting to hot.

SlowDragon profile image
SlowDragonAdministrator in reply to Ysw70

tell him you forgot to stop taking biotin supplements

That you will need to redo thyroid testing

Either via GP or get FULL thyroid and vitamin testing done yourself privately

You need vitamin D, folate, ferritin and B12 tested

Day before test SPLIT NDT into 3 doses, spread through the day….waking, mid afternoon and last dose approx 8-12 hours before test

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Come back with new post once you get results

Hunny_BEE profile image
Hunny_BEE in reply to SeasideSusie

Thanks for posting this. I know that this advice on the protocol before blood work is posted frequently … but I always lose it. I’m taking a screenshot and saving this time. 👍😍

tahoetwilight profile image
tahoetwilight in reply to SeasideSusie

there hace been studies that fast actually can cause a false high TSH

SeasideSusie profile image
SeasideSusieRemembering in reply to tahoetwilight

there hace been studies that fast actually can cause a false high TSH

Yes, there are variables with TSH.

Most members here find that their doctors adjust dose by TSH without giving any consideration to FT4 and FT3 levels or symptoms. This can cause a dose reduction when a patient is optimally medicated, or even if the patient is undermedicated. So to avoid an unnecessary dose reduction, or when the patient is looking for a dose increase, then they need the highest possible TSH if this is all their doctor is going to look at. Hence we suggest that they have nothing but water before the test because certain foods (and drink) can affect TSH level and show a lower level which might trigger a dose reduction.

There would be no need for this if doctors actually listened to their patients, took their symptoms into account and looked at the important test results - FT4 and the even more important FT3.

Ysw70 profile image
Ysw70

t4 wasn’t taken. I didn’t realise not to take before bloods should I still keep taking 3 pills a day but take 1 every few hours instead of 1.5 x2

mistydog profile image
mistydog in reply to Ysw70

I wouldn't worry about the split, just remember next time you test to follow SeasideSusie advice. Being hot and pain "might" be a sign you are taking too much, you could try dropping half a tablet and see if that changes anything?

pennyannie profile image
pennyannie

Hello Ysw and welcome to the forum :

The results as they stand are not complete as there is no T4 and your TSH and T3 are not in the ranges - but these ranges are for synthetic T3 - Liothyronine and T4 - Levothyroxine and not NDT - so your doctor will be confused if he thinks you are taking T4 only as per his records.

You might as well own up and say you are trialling NDT and took your last dose too close to the blood draw - or something like that and explain that you do not feel well of T4 monotherapy as you haven't a thyroid.

There are treatment options on the NHS for thyroidectomy patients - has T3 - Liothyronine been suggested to you:

We really need more information from you to help you better :

When and why was there a thyroidectomy ?

Do you have any readings of your TSH, T3 and T4 results and ranges since the thyroidectomy ?

Have you ever had your ferritin, folate, B12 and vitamin D levels tested since the thyroidectomy ?

With NDT before you start you need optimal ferritin, folate, B12 and vitamin D and we need bench mark readings of T3 and T4 as we need to track how these levels change from taking T4 to taking NDT.

I haven't a thyroid ( RAI thyroid ablation 2005 ) and have been self medicating with NDT for over 4 years now and much improved - and if I needed the doctor to help me - I would have to wait 24 hours for my T3 to be well in the range and my T4 would be very low in range and the very opposite to what it looked like when I was on T4 monotherapy.

I dose NDT once a day - some dose twice but, again, without more information I can't help much more :

Ysw70 profile image
Ysw70 in reply to pennyannie

Hi thanks for replying I have taken vitamins d for 2 years I also take vitamins b complex. I had my thyroid out as had graves then thyroid cancer in may 22. I struggled on leve to even get out of bed. I couldn’t see my t4 on my results.

pennyannie profile image
pennyannie in reply to Ysw70

Ok - I'm sorry to read of your back history - I have Graves too but had RAI thyroid ablation back in 2005 :

Having had thyroid cancer in May 2022 have you been discharged from the hospital ?

I think you need to tell your doctor that your current treatment is not working well for you and can you have a referral back to the hospital.

Were you on an anti thyroid drug like Carbimazile or PTU for the Graves Disease and then cancer found when your thyroid scanned ?

Having had a thyroidectomy in May this year I presume T4 - Levothyroxine was prescribed - this can take a couple of months of dose adjustments before you find a dose that suits you best and you should still be under the care of the hospital.

You need to be monitored by a hospital endocrinologist until such time as you feel more comfortable and only discharged after a period of stableT3 and T4 results.

I don't quite understand why you are not still under the hospital for both health issues and left to get on with things yourself and self medicating ?

Rhannii7 profile image
Rhannii7

im curioys about the dose splitting, ive been taking mine at 6am and 11.30am and i feel uttlerly hiddeous. Anxiety , wired, my hair id dry, skin is dry .

Ysw70 profile image
Ysw70 in reply to Rhannii7

you maybe need to put a post up hun to get a reply

SeasideSusie profile image
SeasideSusieRemembering in reply to Rhannii7

Rhannii7

So that your question will be seen and get replies specifically for you (and so that Ysw70's post doesn't get taken off track), please make your own post and include your latest test results plus reference ranges and say exactly what thyroid meds you take. We can then help you.

jamesal0 profile image
jamesal0 in reply to Rhannii7

Did you optimise your NDT dose? normally - Anxiety , wired, is too much but you have contradictory symptoms hair id dry, skin is dry normally low. I would go down 30mg per day as see if the Anxiety , wired improves. Or even just skip a day or two completely and see how you feel.

Rhannii7 profile image
Rhannii7 in reply to jamesal0

all of these symptoms started when i changed pharmacy for my scripts, i have found out that they import the produxt from China, its a cheaper version of NDT, ive just tracked down another compounding pharmacy in Melbourne who have purchased NDT from another sourse , hoping it makes a difference. Its been a terrible long journey, ive got swelling around my eyes as well which is frustrating, ive been tested for TED they keep telling it isnt it. Im at a loss honestly. I just feel terrible. Labs indicated TSH was 3.2, T4 14 , the lab didnt run t3 for some reason and rt3 was 320. The ranges are Australian

jamesal0 profile image
jamesal0 in reply to Rhannii7

Don't worry about Labs - they only give you a rough starting point. You need to optimise using your symptoms. I use the sailing rule, if in doubt let it out. Translated to NDT - always go down when you are lost and then slowly optimise up looking for symptoms. I've been in your situation when my compounding pharmacy in Canberra changed supplier. I know it was different product because it tasted different (I chew the caps sometimes). Originally they tasted meaty and now they taste like Levo - sort of synthetic. I now keep 3-4 flavors of NDT in the fridge for comparison and "whats going on here" purposes (Thyroid-S, WP Thyroid, Thyro-Gold plus, and local Compounded Pharmacy brand. I buy them online - can send you address if you want. I think all the major suppliers of NDT now cut NDT with Levo to make sure they are hitting the advertised potency - ie 60mg is really 60mg. I suspect what you are seeing is a change in your old to new NDT strength or an allergy to something in the the Levo they cut it with.

Rhannii7 profile image
Rhannii7 in reply to jamesal0

I took the new batch today and can tell the difference straight away, i feel much calmer, God i hope it resores my hair, it so dry and snapping off despite the labs being ok

Rhannii7 profile image
Rhannii7 in reply to jamesal0

how do you finf thyro gold ? I bought 2 bottles havent tried them yet because i was on thyrovanz and it gave me high reverse t3 and and itchy scslp

jamesal0 profile image
jamesal0 in reply to Rhannii7

Strong - blew my ears off

jamesal0 profile image
jamesal0 in reply to Rhannii7

reverse t3 and itchy scalp are just symptoms you are taking too much thyroid hormone - you can get it on Levo if you try hard enough. Go read my profile - list many of my symptoms for Hyper and Hypo.

Rhannii7 profile image
Rhannii7 in reply to jamesal0

how do i access the file please ?

jamesal0 profile image
jamesal0 in reply to Rhannii7

click on my Icon and it's my Profile bumf

Rhannii7 profile image
Rhannii7 in reply to jamesal0

thank you

Brightness14 profile image
Brightness14

It looks like you are taking to many grains. I take 2.25 split into two doses and my results are perfect. I have no thyroid either. You may feel better taking less, but slowly.

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