Started NDT. How long until Temp comes up? - Thyroid UK

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Started NDT. How long until Temp comes up?

vkg1 profile image
vkg1
23 Replies

I started NDT 4 weeks ago and took two weeks at 1 grain, two at 2 grains, and now for a couple days have been in 3 grains.

I’ll get a blood test in a couple weeks, but I’m surprised my T remains the same averaging at 97F/36C in the afternoon.

Does anyone know or recall how long it took their temperature to start coming up after starting thyroid treatment? Especially on NDT (ie with direct T3 included), I’m surprised not to have witnessed any effects yet.

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helvella profile image
helvellaAdministratorThyroid UK

You are increasing your dose at a frighteningly fast rate.

What were you on before starting desiccated thyroid?

vkg1 profile image
vkg1

Nothing. I’ve had hypothyroid symptoms for 10 years and for a while had above range TSH but then for some reason it came down to around 3 and doctors refused to treat.

I’ll stop going up now that I’m on 3 grains, certainly at least until after blood test. But I do wonder why I see no effects even after a month. Did you monitor your temps?

Clutter profile image
Clutter

Vkg1,

You've raised to 3 grains very quickly. Hold at 3 grains for 6-8 weeks and then order a thyroid function test and FT3.

Normal body temperature varies by person, age, activity, and time of day. The average normal body temperature is generally accepted as 98.6°F (37°C). Some studies have shown that the "normal" body temperature can have a wide range, from 97°F (36.1°C) to 99°F (37.2°C).26 Jan 2017

Body temperature norms: MedlinePlus Medical Encyclopedia

medlineplus.gov/ency/articl...

vkg1 profile image
vkg1 in reply to Clutter

Thanks for the advice. Indeed, that’s exactly what I intend to do.

Some people have low temps like mine as a symptom of hypothyroidism, and it gets raised by thyroid medication.

Do you know anything about how long that typically takes to occur?

Clutter profile image
Clutter in reply to vkg1

Vkg1,

While low temperature can be a symptom of hypothyroidism it can also be normal for some people, especially women, to have low temperature. Low temp doesn't always recover so it's not a good guide to dosing.

vkg1 profile image
vkg1 in reply to Clutter

Yes, I have been following the STTM guidelines for increasing dose up to 3 grains, and now will be staying the same until receipt of blood test results. I just was curious why I haven’t witnessed any effects yet and how long it typically takes for them to appear.

Clutter profile image
Clutter in reply to vkg1

Vkg1,

STTM guidelines are for people switching from Levothyroxine to NDT and STTM doesn't take into account people with thyroid levels within range who may need very low doses.

What effects are you expecting to feel? If you haven't felt any improvement in symptoms it may be because you've only been taking NDT for 4 weeks. It usually takes up to six weeks to feel the full impact of a dose.

vkg1 profile image
vkg1

Do you fear I may be in for hyper symptoms soon when it actually “kicks in”? Maybe I’ll back down to two then. I just thought since the half-life of T3 is only a few hours and T4 less then a week then I should be feeling something by now. Some people talk about getting hyper symptoms already in their first week but I’ve been on the medication for a month.

radd profile image
radd

veg1,

You have introduced NDT too much, too quickly and it is strange you feel no adverse effects.

Have you been tested for Hashimotos ? ? …

In order for thyroid hormone circulating in our blood to have a physiological effect, it must first activate receptors on cells, and inflammatory cytokines caused by Hashimotos or other illness have been shown to suppress thyroid receptor site sensitivity.

Do you know your cortisol levels ? ? … Have you had sex hormones checked ? …

Prolonged elevated cortisol caused by chronic stress (ie low thyroid hormone) decreases the liver’s ability to clear excess oestrogens from the blood …. which in turn increases TBG (the proteins that thyroid hormone are attached to as it’s transported through our body). Too much TBG will attach too much thyroid hormone leaving blood tests “normal” but too little hormones active.

Remember thyroid hormone must be cleaved from TBG to become “free” before it can activate cellulars receptors …. (ie free T4 and free T3 in blood test results).

Whilst a felt inner heat with the introduction of T3 is more usual, I have read that some people can take ages to recoup a "normal" temp and others may never quite recover.

Has your pulse increased ? ? ...

vkg1 profile image
vkg1

I have not been tested for Hashimoto because my endocrinologist says my thyroid is “fine”.

My last test showed FT4 = 14.6 (12.0-22.0) and FT3 = 4.6 (3.1-6.8). Sex hormones are all middle of range, but that’s probably because I am on TRT.

What would you do if you were me? I have had no libido for 10 years along with all the other things. I can live with the others but not having children is unfathomable for me. I’m at wits end.

My one other odd blood result was Androstenedione, which is 21.6 (1.75-8.6). My pulse is lower than average (62 atm) but I don’t remember what it was before. Thank you very much for all your advice.

radd profile image
radd in reply to vkg1

vkg,

Have you had TSH tested ? ...

You shouldn't have to live with any "other things". I would start at the beginning.

Get thyroid antibodies checked, test cortisol, ensure Vit B12, Vit D, folate and ferritin are all optimal, check selenium, zinc levels, look at gut health (twenty percent of thyroid hormone is converted to active T3 in the gut).

All these these things and more will encourage good thyroid hormone synthesis.

HRT is fine to take with NDT ... I do... but you have to ensure each hormone is balanced because otherwise it is common to end up with too much TBG as explained above.

Many members have to conduct their own private tests when doctors are uncooperative.

.

thyroiduk.org/tuk/testing/p...

vkg1 profile image
vkg1 in reply to radd

This last test my TSH was 2.76. I have been taking large doses of everything you list except iron for several months without apparent effect. I’m quite confident I’m not low in any of them, though I’ll also add iron.

What do you make of the blood results I listed?

I’m not sure what starting from the beginning is exactly. I’m not aware of anything I could do differently (but am eager to hear suggestions). Do I gather correctly that you would probably recommend just sticking to perhaps two grains daily for a month or so and then getting blood test?

I just wonder what if I do that, bloods come back optimal, yet I still have all the same symptoms. What do I do then?

It took me about six months before I increased to 3 grains. I started on just 1/2. My temperature is now normal.

vkg1 profile image
vkg1 in reply to

So you spent basically a month at each 1/2 grain increment dosage? Why exactly did you go so slowly, and at what point did you start to feel better? I'm just curious what the rationale behind your approach was. Thank you for sharing your experience.

in reply to vkg1

I knew nothing about the thyroid until I had mine out in 2015. I was on Levo for 6/7 and felt so ill. I joined this site and started to self medicate on NDT.

I just followed the advice of the other people on the site and started with 1/2 then increased slowly. I started to feel better within 1/2 months.

There seems to be no rational approach to do with the thyroid at all that's why so many people are completely baffled but it. When we know that the doctors and Endos don't know either it can be daunting.

I actually held at 2.5 grains for a few months just to see how I felt and then increased to three. I still don't feel as I did before the operation but I am plodding on. I am having blood tests done in the UK this month.

eeng profile image
eeng

Many people feel 'wired' on too much thyroid hormone, and get shaky, anxious (including panic attacks) and unable to sleep properly, with a fast pulse and sometimes loose bowels. That's why they take it slowly. In fact it's amazing that you aren't getting any of these symptoms. What brand of NDT are you taking?

vkg1 profile image
vkg1 in reply to eeng

If you were me what regimen would you use instead if you were very eager to obtain improvement as quickly as possible?

I’m using Thiroyd obtained from a reputable source. I just measured my pulse and it’s 59.

Today I dropped down to 1.5 grains. So to review, I took 3 grains for a few days, but on average have been on 1.5 grains daily for a month (two weeks on 1 and two weeks on 2 grains).

eeng profile image
eeng

A pulse of 59 sounds slightly low rather than high. I try to keep mine around 60 (and I'm 60, you being younger would expect to be higher than mine, unless you are an athlete). Just watch out for the symptoms I mentioned, and be aware that your GP will likely throw a hissy fit once your thyroid blood test results come through. Your TSH will be zilch because you are taking something containing T3. That's normal, but he won't see it that way. Are you planning on doing your own private blood tests? You are aiming to get your FT4 and FT3 into the top third of the range, but not over range.

Good luck.

vkg1 profile image
vkg1 in reply to eeng

Why are you amazed that I don’t have hyper symptoms if the most common NDT dose is 3 grains but I’m only on 2? Just curious what the rationale behind building more slowly is.

Yes I found a local lab that I can get my own tests from, and was planning on shooting for those exact values you’ve described.

eeng profile image
eeng

I'm amazed because your TSH level wasn't very high, so your thyroid was still producing quite a bit of hormone (if not quite enough maybe). 3 grains of NDT would suit someone whose thyroid wasn't working at all. I suppose your pituitary has told your thyroid to stop producing any hormone and it has. The normal way of using thyroid hormones is to top up what your body is producing, not to suddenly replace it.

vkg1 profile image
vkg1 in reply to eeng

Ok thanks for your feedback. I thought that people taking NDT almost always go to near-zero TSH by the time they've gotten their FT3 and FT4 in optimal range. Or in other words, I thought that replacement of normal production is normal. Is that not the case? Perhaps since I do not have hyper symptoms there is nothing to worry about for me anyway?

SilverAvocado profile image
SilverAvocado

Mine would always fluctuate a bit, and has been about 36.5 for probably a year or more. It's got to the point where I don't really regard it much.

Four weeks is a very short time, as everything moves very slowly with thyroid replacement. Generally I feel the first effects of the new dose after about 2 weeks. But then it takes a longer time to settle down. If the question is how long will it take to actually get better, it varies a lot, but I think 6 months is a good order of magnitude, assuming you are very lucky and everything goes perfectly.

Something I'm wondering is why you're asking about temperature spectificalky. Haven't you felt any changes in your symptoms overall? It can be quite difficult to spot because hypothyroid is very subtle and the symptoms are hard to pin down, but I would expect you to feel at least a little different already.

I think if you'd asked me from the very beginning, I'd have suggested you try a half grain, maybe raising that to 1 after a few weeks, and then just hold for up to two months and see if you notice any difference in your symptoms. Because if you don't get improvement in symptoms then there isn't any point in taking it!

Curious82 profile image
Curious82

I'm curious how this turned out!

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