Seeking advice on NDT: This month on three grains... - Thyroid UK

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Seeking advice on NDT

Helena877 profile image
20 Replies

This month on three grains my results are:

TSH 0.048

T4 16.18 (12-22)

T3. 11.64 (3.1-6.8)

At last - finally -I have a suppressed TSH but the T3 is now way over range. Sigh!

Just last month my results were T4 7 and T3 a measly 1 on two grains of NDT.

My GP said to increase from 2 to 3 grains due to such poor results and this is what I've ended up with.

On NDT I'm aware that TSH becomes suppressed. Can T4 be discredited too?

In the long run is T3 all that really matters?

What would you recommend that I do? Keep off the meds for a few days and then lower to 2.5 grains or 2.25?

Thanks

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Helena877 profile image
Helena877
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20 Replies
Helena877 profile image
Helena877

I definitely didn't take any NDT for 24hrs prior to the test and this was taken on an empty stomach first thing in the morning.

greygoose profile image
greygoose in reply toHelena877

If you left off your NDT for 24 hours, you left it too long, and the FT3 result you have is false. Your normal circulating T3 will actually be higher than that! As NDT contains T3, you should only leave maximum 12 hours - it doesn't matter about the T4, which would actually be higher than that shown.

However, it's somewhat surprising that your FT3 has risen from 1 to 11.64+ on increasing by 1 grain. That's a huge increase. So, I'm wondering if you have Hashi's and the results are actually nothing to do with your dose of NDT.

In any case, it was foolhardy of your doctor to increase your by NDT by one whole grain, in one go! That's sheer lunacy, and the best possible way to miss your sweet spot! :)

Helena877 profile image
Helena877 in reply togreygoose

Thank you greygoose I hadn't realised 24hrs was too long for NDT.

I do have Hashi's. Until this past month (well, the last six weeks) my TSH had been out of control. Never going below TSH 5. I couldn't believe getting these results as on two grains I had TSH 7 last month and under range T3!

I've not taking anything for the past two days in an attempt to get my levels down.

greygoose profile image
greygoose in reply toHelena877

Well, they will go down, eventually. But just how long it will take, is anybody's guess.

Are these supposed to be results for free T3 and free T4? It's normal for suppressed TSH on NDT. But did your GP suggest upping 1 entire grain at once? This is not how dosage increases (or decreases) are supposed to be done. The most you should increase should be 1/2 grain increments but many increase by only 1/4 grain especially when so close to optimal results. As far as how much to decrease you need to ask yourself first how do I feel? That should be an important part of the answer here.

helvella profile image
helvellaAdministrator in reply to

Total tests are rarely done in the UK these days - and the ranges appear consistent with Free T4 and Free T3.

Very much agreed about small increments of dose. Or decrements - usually.

Helena877 profile image
Helena877 in reply to

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Yes - these are my free T levels.

Yes - he said to increase from 2-3 grains.

I felt undermedicated on two grains. I don't feel overmedicated on three grains. My scalp is dry and itchy with little spots/bumps. Feel rough ... like I've been up all night.

jamesal0 profile image
jamesal0

Hi Helen

I tune my NDT nearly daily by anything up to 30mg. And only worry about TSH every 3-6 months when getting blood for GP. The number one question from GP should be, how do you feel on 3 grains. If Ok - great leave you alone.

He/she should then say, Now take more until you go Hyper, now you know where the top is and how much it takes per day. Then reduce dose until you get side effects - cold hands, can't think straight etc. Now you know the minimum dose. Then just tune the daily dose between your upper and lower figures. Winter take more, summer take less, out of energy, falling asleep at work - take more , jogging today - take more and so on.

NDT is really quit easy but people make it hard for some reason.

Helena877 profile image
Helena877 in reply tojamesal0

I think it has got to be what greygoose suggests and that it is to do with having Hashi's.

I feel awful. Definitely more hypo symptoms and nothing to suggest hyper symptoms!!

Helena877 profile image
Helena877 in reply tojamesal0

I don't feel good.

The biggest issue I feel I have is that with TSH of 7-14 I feel barely no different. My symptoms are subtle.

I feel at my worst overnedicated but with none of the usually heard of "hyper" symptoms.

Obviously I need to reduce based on current situation whether it be Hashi's hormone dump or over medication.

jamesal0 profile image
jamesal0 in reply toHelena877

I would increase first, until you get heart pounding - dont worry about thyroid blood test for the moment. What is your B12 like, get a test - you want to be in the 900's

Helena877 profile image
Helena877 in reply tojamesal0

My B12 is consistently high and over range and take all the other vitamins.

I'm a bit reluctant to take more NDT as I've got a private prescription for my NDT on the understanding that he will oversee my blood tests. He's already going to think that I've been gobbling extra grains when he sees the latest blood test!!

Only thing I have done differently in the last month is I did a four day intensive detox and gave myself four enemas to try and sort out any lingering gut issues affecting absorption rates.

In the past I've seen articles and posts elsewhere which suggest that NDT + Hashimotos are not a good combination. What is the argument behind this?

jamesal0 profile image
jamesal0 in reply toHelena877

just drop back to 2 grains a few days prior to blood test to keep gp happy. Have no idea about the rest, I try to take/do as little as possible, I won't even take an aspirin unless I'm dieing. I'm a Hashi and take NDT - article is probably funded by levothyroxine Pty Ltd

silverfox7 profile image
silverfox7

Results on NDT

TSH duppressed

FT4 may reduce down to halfway.

FT3 high in range but never consistently over

FT3 can rise with a virus but you may not even be aware you have one! So retest in a few weeks to see if fallen back. It not reduce dose.

When starting NDT I was told that after two grains to increase in quarters. I still got up to 3 it was told taking to much and to stop for two days then go down to 1.75 which seemed a huge drop but I did think I had felt slightly better at some point on the way up!

Well did as I was told and Endo was right! Slightly over and slightly under I thought felt very much the same so now if unsure I always try dropping down first. If feel better stick with that. If feel worse then go back up fit a. Pulps of weeks then go if a quarter. If you raise first and you are actually over medicated you just won't feel any better and the danger is you will keep increasing without realising you are going the wrong way.

I was on 125/100 Levo and went to 1.75 NDT so only a rough guide as potency of both can change slightly between different brands.

Carriebaby profile image
Carriebaby in reply tosilverfox7

Hi just read your advice on NDT and now I am fatally confused as I started taking NDT last June and had been on 100 Levo beforehand for a long while ! I was told I had slightly raised blood pressure last May but it has gotten worse and now been put on another drug to lower it. My Blood results were less than this lady

T4 16.7 Range 9 - 24

T3 8.9. Range 3.5 - 6.5

TSH. 0.1 Range 0.3- 0.6

I have now dropped my NDT down from 2 grains to 1.5 grains

Please give me advice

Helena877 profile image
Helena877 in reply toCarriebaby

Hi Carriebaby

You need to start a new thread. That way you'll get advice that is specific to you. It will get lost amongst mine

Helena877 profile image
Helena877 in reply tosilverfox7

Ah.... I did have a virus six weeks ago - strep throat and treated with antibiotics. My son also had it and has had to take another dose of antibiotics as the first batch didn't kill it off.

Agree - under medicated and over medicated (or these latest results of mine) feel no different to me. No extra energy despite all this massive boost of T3 I have :-(

Have stopped doseage to try and get level down.

jamesal0 profile image
jamesal0 in reply toHelena877

Doesn't really matter if you go up or down. You just do one or the other until you have side effects, then try the opposite until you get side effects, and hopefully somewhere along the way you feel better and can stay there. Only change by 30mg and stick on that dose for 1-2 weeks so it can balance out in your blood. Example if you are 3 grains change to 2.5 grains and do that for a week. I wouldn't go below 2 grains or above 5.

ps - you will get side effects you just haven't had them before and hence don't recognise.

jamesal0 profile image
jamesal0 in reply tojamesal0

One pretty good guide to NDT dose is your temp. If you are under 36C you are under dosed.

Helena877 profile image
Helena877

jamesal0

Thanks for all your suggestion James.

I will buy a thermometer and keep an eye on my body temp.

Well, it is day 4 of no thyroid hormone. Speaking to the Dr tomorrow. Thinking about running another blood test and checking antibodies this time.

What I don't want is to maintain my current T3 level by staying on 3 grains. I believe as others have said that I have had a Hashi's flare whilst been on 3 grains and that explains away such a large increase of T3 (1 to 11). So I understand the NDT has little to do with it. Will drop back to 2.5 grains as I know 2 is insufficient. I hear what you say about discovering at what doseages I have hypo symptoms and hyper symptoms but will wait until after the flare to test this out.

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