Why has small increase in NDT caused worse symp... - Thyroid UK

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Why has small increase in NDT caused worse symptoms?

Everdean
Everdean

After advice on here that I needed to increase my NDT because of low T3 results, I increased by one quarter last week and now feel really really ill with severe fibro pain and lightheadedness. My results were:

TSH. 0.02(0.27-4.2)

T3. 3.1. (3.1-6.8)

T4. 14( 11-22)

Folate 18.7

Ferritin 174 (30-260)

Vit D. 120. ((≥50)

B12. 762(197-771)

This was when I was on 2 and three quarters NDT. I haven't been well on lower doses either but now is really bad.

My doctor is also saying I'm over medicating and wants me to stop all meds.

My pulse is about 59 resting. My temperature is around 95.5.

Please help thank you.

28 Replies
oldestnewest

.. and the results were ? 🤔

Your doctor knows nothing about blood tests when taking NDT, so don't listen to him! Despite your low TSH, you are still very hypo because your FT3 is so very, very low. And, it's more likely that causing your symptoms than an increase in dose. With an FT3 that low, I don't know how you get out of bed in the morning!

Do you take your NDT on an empty stomach and wait at least an hour before eating, just like levo?

When you had that test, how long did you leave between your last dose of NDT and the blood draw?

Is it possible that you actually have one of these nasty bugs that are going around at the moment, rather than having new hypo symptoms?

Everdean
Everdean in reply to greygoose

Yes grey goose I take NDT on an empty stomach and wait an hour before tea and breakfast. I didn't have my meds for at least 24 hours before my blood test.

I don't know if I've got a virus but I wondered if my adrenals couldn't cope with an increase.

I take 10 mg of Prednisolone each day and don't want to increase them unless absolutely necessary.

Thank you for your reply

greygoose
greygoose in reply to Everdean

OK, so you have a false low FT3, there. You should only leave a gap of 8 to 12 hours with NDT. So, that makes more sense.

Even so, I think your doctor is only looking at the TSH, but that is bound to be suppressed on 2 3/4 grain NDT. But, it's the FT3 the most important number, so don't stop the meds whatever you do!

1/4 grain is a very small increase, so I very much doubt it has upset your adrenals. Give it more time, and see what happens. :)

Everdean
Everdean in reply to greygoose

Ok. Thank you

greygoose
greygoose in reply to Everdean

You're welcome. :)

SlowDragon
SlowDragonAdministrator

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, or NDT make sure to take last split dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

If you left longer than 12 hours FT3 result won’t be accurate

Everdean
Everdean in reply to SlowDragon

I didn't know about the 12 hour gap before the tabloid test. I always take one dose of NDT at about 7 in the morning and then have the blood test the following morning before my next meds. Was this wrong then?

Everdean
Everdean in reply to Everdean

Before the blood test ( typo)

helvella
helvellaAdministrator in reply to Everdean

You may not realise that you can edit, or delete, any posts or responses you have made here. :-)

HealthUnlocked have produced some help for how to do this. You can find this here:

support.healthunlocked.com/...

When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.) This is the same process as writing a new post:

support.healthunlocked.com/...

I am pointing this out purely to ensure that you know your options. :-)

(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)

Everdean
Everdean in reply to helvella

Thanks Helvella

SlowDragon
SlowDragonAdministrator in reply to Everdean

So your Ft3 result is a false low

Last dose of NTD or T3 should be between 8-12 hours before blood test

If you normally take single dose ....on day before blood test split dose so that you take 1 grain at 7 am, one grain at 3pm and one grain at 9pm

Get bloods done at 9am.....before eating or drinking anything other than water and before taking any NDT

Many people split NDT everyday into at least two doses

Everdean
Everdean in reply to SlowDragon

Thank you slow dragon. It's just that I've taken one dose for years and haven't had this problem before.

SlowDragon
SlowDragonAdministrator in reply to Everdean

If it suits you generally to take single dose, just split dose in day before test

SlowDragon
SlowDragonAdministrator in reply to Everdean

Graph showing why to take and meds that have T3 in approx 12 hours before blood test

healthunlocked.com/api/redi...

Research Paper data comes from

ncbi.nlm.nih.gov/pmc/articl...

Everdean
Everdean in reply to SlowDragon

Thank you slow Dragon

Everdean,

I am at the same place you are right now. I also am unsure of what to do. I know I need to increase but every time I do, I get worse. I won't hijack your thread but will also post.

Everdean
Everdean in reply to Evej13

I hope you get some good advice Evej13. I would like to hear how you get on please.

Evej13
Evej13 in reply to Everdean

Happy to let you know how it goes Everdean.

Everdean,

These results look a little strange. Your TSH is very low, but your hormone levels are also very low.

TSH, which stands for thyroid stimulating hormone, raises when the body doesn't have enough hormone to stimulate the thyroid to make more. When hormone levels are low, it gets high, when we've got plenty of hormone it reduces.

Both freeT4 and freeT3 show how much of these hormones you have in your blood. Both of yours are very low in this result. The freeT3 is the most important of the two, as this is thet active hormone. This result shows it all the way at the bottom of the range. If you left over 24 hours, the true value will be a little higher than this, but probably only a little.

This suggests you are very very undermedicated. It's quite common to struggle to introduce or raise T3, and we see this most often when people are very obviously very undermedicated. It is probably due to the adrenal glands, because when we're hypothyroid they end up doing a lot of the work that should be done by thyroid hormone levels.

You mention in another reply that you have known adrenal issues and are taking medication? That makes it very likely this is an adrenal issue. The semi-good news is that once you get your thyroid medicated correctly these will help sigh your adrenal problems, as the two of them should work together. But the difficult thing is that it will be harder to get to that point.

One thing you can do is increase super slow, grind or cut that quarter grain into the tiniest crumb you can reliably get and increase the dose by that amount. If it doesn't cause symptoms increase by another crumb in a few weeks, and continue like that.

You can also do other things to support the adrenals, rest a lot, reduce any kind of strenuous activity, keep stress very low, eat healthy food regularly throughout the day and don't diet or restrict, learn to meditate, etc, etc. All these things reduce how much work your adrenals are having to do.

Getting vitamins optimal is also a boost to both, as is getting good treatment and managing well any other illness.

It's possible you will need to increase the medication for your adrenals, too, although I know nothing specific about that so you need to find others to advise.

If you can increase your freeT3 to good levels it will have a big impact on a lot of your other symptoms, T3 is required by every cell and organ in the body, so worth working on.

Wow! Thank you So much for that advice Silver avocado. I will definitely try that. I have some T3 can I start to add " crumbs "of that to my present dose now?

Yes, if you prefer to add in T3 rather than increase the NDT, the 'crumbs' method would apply just as much to that.

I think in general it is best to stick with one form of thyroid hormone (eg the NDT) and stick with that until you've tried everything and are sure you're as well as you can be using just that. But as long as you've got a good strong reason to think adding some T3 would be better for you then it's fine to do.

I take NDT and T3 myself. I got to the point where I was having ambiguous symptoms of overmedication which I now think were too much T4 rather than too much hormone. I'm now working on slowly building up the T3.

Thank you Silver avocado. I appreciate your replies having read your profile I understand that energy is still a problem for you.

Hi you say you have T3 have you taken it on its own with any success as you might benefit from T3 only with your levels being so low, have you tried different brands of NDT as it might be the brand also you can't tolerate well and if you have hormonal issues the more T4 you are taking the worse you may feel if it isn't converting to T3 correctly due to estrogen dominance, Have you had reverse T3 tested ?

Everdean
Everdean in reply to Merlio18

Yes I have some T3 which I bought on holiday. I was prescribed it by my GP untill the cost rocketed. I was left to sort it myself. I'm not well enough To go abroad so bought some NDT from Thailand about 6 months ago and have been using that instead. It's getting more expensive even on line now for all thyroid meds. I could try changing back to T3 and hope I can get more when they run out.

Any suggestions on how to change back to it please?

Thank you.

You may have a genetic defect that limits your ability to convert T4 to T3. I just found out that I have this. So I can't increase my NDT after a certain point because it raises my T4 too high. But I'm still hypo and tired because my T3 is too low. The answer is to increase T3 only, and perhaps decreasing the NDT. Good luck to you.

Teras
Teras in reply to Teras

I forgot to add: ask for the reverse T4 test.

Everdean
Everdean in reply to Teras

Thank you so much Teras . I don't think my Dr will do RT3 or RT4 . But I'm looking into splashing out on private blood tests.

Thanks again.

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