Too much NDT??: Hi all I’ve been taking 3 grains... - Thyroid UK

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Too much NDT??

KWallis76 profile image
16 Replies

Hi all

I’ve been taking 3 grains of Thyroid S for a couple of years now and have felt really well on it. I recently had the following tests done at Medichecks and as a result made the decision to reduce to 2.5 grains 2 weeks ago. I now feel horrendous, brain fog, lethargy etc.

Do I go back to 3 grains and ignore the test results or wait to start to feel better?

Advice welcome 🙏🏻

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KWallis76 profile image
KWallis76
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16 Replies
Lora7again profile image
Lora7again

If you have been feeling well on 3 grains why would you reduce it? My thyroid blood results which I had taken earlier in this year show my TSH is 0.38 and the T4 is 22. I am actually taking nothing at the moment and I feel well. We are all different and when I took Thyroid S I never did any blood tests because I knew my TSH would be suppressed and my T4 would be low and my T3 high. You usually go by how you feel with NDT and adjust it accordingly. I think if I had done a blood test it would have alarmed me so I didn't. I did stop taking Thyroid S because I could tell my levels were too high because my nails started to lift off their beds and my hair started to fall out and I felt over active. We are all individuals and blood tests are helpful but they don't give a full picture of thyroid function in my honest opinion.

TSH110 profile image
TSH110

I’d only reduce or increase by 1/4 grain, to avoid any big shock to the body. Your free T3 is very over range. Perhaps you could try going up a quarter grain and see how you feel on 2.75 grains. You can take it from there.

This guide has useful info about dosing and getting the optimal dose. It does not rely at all on blood tests. You may find it helpful. It is all I have ever used for taking my ThyroidS:

tpauk.com/main/article/trea...

There’s also some interesting info about the significance of thyroid antibodies here, you may find helpful give the elevated TPA result

thyroidpatients.ca/2020/04/...

KWallis76 profile image
KWallis76

Thanks, I might try splitting the dose too, I usually take it all in the morning when I get up....

greygoose profile image
greygoose

Do you have any other test results on the same dose? That's the most important question. If you've been taking the same dose for a couple of years, with in-range results, your FT3 wouldn't suddenly go over-range for no reason. So, I'm guess that reason is your Hashi's: a Hashi's 'hyper' swing.

So, yes, as you now feel horrible, put your dose back up to where it was and see how you feel. :)

DippyDame profile image
DippyDame

Feeling well with that FT3 level...

You possibly have a form of thyroid hormond resistance (RTH)which requires high serum T3 in order to push (overcome the resistance ) an adequate amount from the blood into cellular/tissue level where the T3 is utilised. It doesn't do anything until it enters the cells and any "surplus" in the blood will be expelled via bowel and bladder.

If you felt well on 3 grains then the body was satisfied with that dose....as reducing it and feeling rubbish proved.

Listen to your body!

There is no test to measure cellular level of T3, we have to monitor by clinical evaluation.....checking basic heart rate, temp and blood pressure for above recommended levels which would indicate overmedication.

I have RTH and take a huge dose of T3 with no signs of overmedication. My FT3 is very high and would be very dangerous without the existence of RTH.

I no longer test but dose by symptoms though I'm not advising that you need to do this!

You may also have a conversion problem (I'm positive Dio2/homozygous) but difficult to say when now medicated with NDT

I'd suggest going back to 3 grains and see how you feel.

Also many with Hashi's benefit from a gluten free diet..have you tried this?..

Just a few thoughts based on my own experience

Best...

DD

KWallis76 profile image
KWallis76 in reply to DippyDame

I have dabbled with gluten free before but I don’t think I gave it long enough to see a difference as I found it so restrictive....

I haven’t done any tests since I moved on to NDT as I was using my symptoms to tell me when I was on the correct dose.

It just goes to I should have stuck with listening to my body....

DippyDame profile image
DippyDame in reply to KWallis76

There is a place for tests....but not always!

Good luck

KWallis76 profile image
KWallis76 in reply to DippyDame

Thank you 😊

pennyannie profile image
pennyannie

Hello KWallis

Well I think you know the answer and that's to stay where you were and carry on carrying on :

What prompted you to do this blood test anyway ? Have you been diagnosed with Hashimoto's disease because that's the logical explanation if new symptoms popped up and you thought take a blood test.

NDT was the successful treatment for over 100years way before blood tests came into existence, along with the guidelines and the How To Dose with the new thyroid hormone treatment - Levothyroxine for hypothyroidism in the 1960s.

I'm also on Thyroid S and do believe the " S "stands for slow release so dosing once a day.

KWallis76 profile image
KWallis76 in reply to pennyannie

I didn’t know that about the S, really helpful thanks.

I’ve never been formally diagnosed with Hashies but all my results point in that direction...

I did the tests as it had been so long since I’d done any, I was curious. Safe to say I should have just carried on. Hindsight is a wonderful thing!!

pennyannie profile image
pennyannie in reply to KWallis76

Well, that's what I was told, though I know there are other people who do not dose as though it's slow release - at the end of the day, if it works for you as it is, that's all that matters.

foxglove profile image
foxglove

Very interested to read your post, I have been taking thyroid-s for a few months, gradually increasing dose, now on 1.5 grains. Don't feel good but don't feel bad either. Can't afford to pay for test at the moment. I think I'm going to be brave and start 1.75 grains from tonight, and if still have "not good - not bad" feelings will see if I can afford test after 6 weeks. Or if medichecks has any offers maybe sooner!

p.s. of course i maybe lucky and the 1.75 grains will suit!

KWallis76 profile image
KWallis76 in reply to foxglove

Medichecks often have offers on every Thursday, with hindsight I wish I hadn’t bothered though and stuck with my gut feel...

pennyannie profile image
pennyannie in reply to foxglove

You need to be increasing by a 1/4 grain/tablet every week until you reach 2 grain/tablets where upon you stay on 2 grains for 6-8 weeks to let it bed in, and then you do a blood test to compare results with your original bench mark readings from before you started NDT.

After this 6-8 weeks on 2 grain/tablets and ' happy ' that there has been an improvement in your level of T3 you start again building up in 1/4 grain/tablet weekly increases.

There will be a week when your 1/4 grain dose increase become a negative and you may experience symptoms of slight overmedication, maybe nervousness, anxiety, or just uncomfortable within your own skin and body, so then you just go back to the previous dose and stay on that dose for 6-8 weeks and then take a blood test should you wish, as this maybe your best dose on NDT.

Conversion can be compromised if vitamins and minerals, especially ferritin, folate, b12 and vitamin D are not maintained at optimal levels.

foxglove profile image
foxglove in reply to pennyannie

Thanks for your helpful reply, I have just started 1.75 grain so working towards the 2 grain,I stay on each increase for a few weeks to give it a chance to effect

Necessary vits etc. all checked Vit d not as I would like I'm working on getting as much sun as I am comfortable with. I'll get a check at the end of Summer. I have very fair skin and it doesn't take long to raise vit d, and it's within the range that only needs a little help'!!! Hope you well, take care!

At the moment I'm "comfortable" in my body and skin so perhaps 1.75 is MY dose

foxglove profile image
foxglove

I hear what you're saying but (do forgive) I don't really know how I feel!!

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