Timing of blood test

[19aglow49]

I take my NDT at appx 4am is it ok to take bloods at 10-11am?

[pennyannie]

Hello there

Is this your first blood test on taking NDT ?

I'm self medicating with NDT and now don't bother and have a yearly blood test more for my vitamins and minerals than my actual thyroid results.

On NDT you will see a low/suppressed TSH, a low in range T4 and the high in range T3:

If you wait 24 hours between dose and blood draw the % ratios through the ranges will be slightly lower and if this is what you are wanting to achieve so be it.

I think consistency is important when trialling NDT and it's also important that you maintain your ferritin, folate, B12 and vitamin D at optimal levels to assist in the total thyroid hormone replacement converting to T3 - which is the active hormone that the body runs on.

[19aglow49 in reply to pennyannie]

Thanks pennyannie. Yes I am trialling. I’m deficient in t3 due to a genetic fault. I take all the tabs you mentioned.

[pennyannie in reply to 19aglow49]

So in my experience you dose NDT to the relief of symptoms and no a blood test result.

NDT was used successfully for over 100 years and before blood tests, ranges, guidelines and computer tick box exercises.

Years ago the doctor would check you physically and listen to your symptoms and if he suspected hypothyroidism he gave you a nugget of pig thyroid to chew on - when you returned if your symptoms were still apparent the doctor would dispense a larger nugget for you to chew on - so forth and so on until you symptoms were gone.

When I started self medicating with NDT my ferritin, folate, B12 and vitamin D were optimal for me and I had bench figures of T3 and T4 to work from.

I took my temperature and blood pressure each day am and pm :

My temperature rose from 35.4 to 36.8 where it now hovers and there was no change in my blood pressure readings.

I started on 1/2 grain for a week and then each week I increased by a 1/4 grain until I reached 1 + 3/4 grains and felt a little edgey and uncomfortable in myself so dropped back down to 1 + 1/2 grains where I have stayed for about the last 18 months.

Increase low and slow, and if you get to 2 grains then stay on that dose for 8 weeks and then take a blood test.

Compared to your bench mark numbers, your TSH will be low/suppressed and your T4 at a lower level but most importantly your T3 should have risen.

I have read of people who have this gene but do not know how big an impact it makes on conversion of the T4 in NDT :

I understand the average person uses about 50 T3 daily just to function and if you are needing 5 + grains of NDT, working on the assumption that your NDT breakdown is about 38 T4 + 9 T3 per grain, T3 only - Liothyronine might work out a better, cheaper option.

I'm with Graves post RAI thyroid ablation and the above worked well for me and I find NDT very subtle as it can take time to settle within the body, and you then realise you haven't those aches and pains you once had, let alone the brain fog and heaviness of everything.

[19aglow49 in reply to pennyannie]

Oh crikey! A nugget of pig thyroid - the tablets are bad enough. You’re right about being symptom led. Unfortunately as I’m in England,liothyronine isn’t available.

[pennyannie in reply to 19aglow49]

Yes it is pig thyroid dried and ground down into tablets referred to as grains.

Please do your research as it will better prepare you.

I am in the UK - Liothyronine T3 - is available on the NHS and considering you have the gene defect, you may stand a better chance than I did.

If you go into - openprescribing - analyse - you can see by CCG and doctors surgery where T3 is being prescribed - and what is happening in your area.

[19aglow49 in reply to pennyannie]

Hi, I’ve contacted the CCG months ago but I havn’t had a reply. The professor who wrote the genetic test report didn’t help matters, as he said replacing the t3 would give some increase in well-being. No mention of the relief from the awful effects of living with the deficit.I don’t know what area you live in but liothyronine seems to be unavailable in the S.E. I tried to get help from the Patient Liason Service. I was informed that they would accept my application as my endocrinologist was from another district.

They are really playing games, as both of the endos I was referred to in 2018 were both at different hospital trusts- not at my local hospital- despite ( after research) employing an endo since 2013.

The endo just issued a private prescription with no clear instructions or advice. The pharmacist has been invaluable with his help.

The dosage prescribed isn’t enough as my symptoms are back- I don’t need blood tests to confirm this. So It’s back to the gp to be referred to the local endo.

This is very wearing, especially as I’m dealing with the deaths of 4 close family in 6 years- the last being my eldest daughter last December. Also other chronic diseases.

On the subject of research - I’ve done nothing else for years.

[pennyannie in reply to 19aglow49]

I'm sorry if I have upset you - that wasn't my intention ;

I have gone through the same song and dance and fighting the system simply exacerbated my symptoms so I gave up fighting and purchased both T3 and NDT for myself and started self medicating in 2018.

The situation is dire down here, in Cornwall, and I believe the restriction was placed on new patient prescriptions whilst existing patients on T3 are actively encouraged to switch back to T4.

I was refused NDT by my surgery back in 2014 and became increasingly ill and virtually housebound throughout the following 2 plus years and refused a trial of T3 in early 2018 owing to my suppressed TSH and told I was over medicated with a T3 at just 50% through the range.

I spent 6 months trying to get this decision reversed but was kept hanging, and became too ill to keep up the momentum needed at our one and only hospital., where I foolishly believed, you went for help when elderly and sick, and when your doctor has " no answers " .

I now see via the open prescribing website both T3 and NDT making small appearances at monthly intervals, but I have not been back to the surgery in these 3 years.

Thyroid uk the charity who support this forum hold a list of " friendly, sympathetic endo's " - maybe there is an option there in the SE area - I am sorry for your loss and did not wish to cause you further upset.

I'm with Graves disease and post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease- caused by the RAI - and hypothyroidism.

[SeasideSusie Remembering]

19aglow49

We usually advise last dose of NDT to be taken 8-12 hours before blood draw, splitting dose and adjusting time the day before if necessary.

[19aglow49 in reply to SeasideSusie]

Thanks for your advice SeasideSusie.

[19aglow49]

Thanks Scrumbler I’ll try that.