Help wanted before endo visit.: In March my wife... - Thyroid UK

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Help wanted before endo visit.

Chrys profile image
19 Replies

In March my wife was on a prescription of 50mcg Levo and 10mcg T3, her bloods were:

TSH 4.24 (0.27-4.20)

T4 total 74.3 (64.5-142.0)

Free T4 11.87 (12-22)

Free T3 2.91 (3.1-6.8)

After which the endo recommended increasing T4 to 75mcg for 4 weeks, then 100mcg, while still taking 10mcg T3.

After an apparent improvement on T4 75, my wife reverted to feeling slugghish and brain foggy on 100mcg.

I stopped the Levo altogether after 2 weeks on 100 T4, and increased the T3 to 15mcg in 3 doses of 5 per day. She has improved mentally and physically so much, although still not 100%, that I was surprised at last weeks test results as follows (Ranges are the same):

TSH 4.78

T4 Total 24.4

Free T4 3.92

Free T3 3.02

While I can point to wife's improvement when we see the endo, he will no doubt want to do something to bring her tests into range, and I would welcome any comments to help.

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Chrys profile image
Chrys
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19 Replies
shaws profile image
shawsAdministrator

I am sorry your wife is still struggling but it's good you are helping to return her to good health.

I take T3 only but once daily and am fit and well. I never thought I'd ever get well.

On levothyroxine my experience was horrendous (being undiagnosed for quite a number of years) but given 'other' diagnoses for things I didn't have along with 'treatment'. I cried when finally diagnosed with a TSH of 100.

25mcg of T3 is equal, in its effect to around 100mcg of T4, so it seems that your wife's dose is too low @ 15mcg daily. Her T3 should be towards the top of the range. T4 will be low if not supplementing. Dr Lowe was an Adviser to TUK who was thyroid hormone resistant himself, took 150mcg in the middle of the night until his premature death. I shall give you a link which may be helpful.

web.archive.org/web/2010103...

Go to the dates January 30, 2002 December 17, 1997 on the following link:

web.archive.org/web/2010103...

I have tried all various doses etc. T4, T4/T3, NDT/ T3 only. It was only when on T3 only I fully recovered.

Chrys profile image
Chrys in reply to shaws

Thanks very much Shaws, I have read those links again. What a loss to the community when Dr Lowe died. I am reluctant to quote him to our endo, but will if pushed to return to Levo, on which my wife has never really thrived.

Saggyuk profile image
Saggyuk in reply to Chrys

Just in case, remember not leave T3 for 24 hours after dose before blood test like T4 as will skew the results. My levels drop very fast so you wouldn't want to leave more than 12 hours, I normally do a little less :-)

greygoose profile image
greygoose in reply to Saggyuk

And, just in case, remember that T3 should be taken like levo, on and empty stomach, leaving one hour before eating, etc. :)

Chrys profile image
Chrys in reply to greygoose

I didn't know that. I read somewhere that it didn't matter!

greygoose profile image
greygoose in reply to Chrys

Well, all the evidence on here, points to the fact that it does matter. Even if no scientific research has been done on the subject.

Chrys profile image
Chrys in reply to greygoose

We have found that T3 acts almost instantly with my wife. For example this AM she was feeling quite shaky and 'foggy' when she got up, but within 10 minutes of taking only 5mcg T3 she was feeling much better, and having breakfast immediately thereafter did not cause a reversion.

greygoose profile image
greygoose in reply to Chrys

What do you mean by 'reversion'?

She may have been feeling better, but that doesn't mean that she'd absorbed the whole 5 mcg. How much T3 is she wasting by eating straight after taking it because it binds to elements in the food and can no-longer be absorbed? I can't understand this reluctance to wait a bit to make sure she's getting the full benefit of her dose.

Chrys profile image
Chrys in reply to greygoose

I meant reverting to shaky and 'foggy'.

No reluctance here, just unaware having read somewhere that T3 is absorbed almost immediately, and certainly appears to be when my wife takes it. Shall endeavour to apply gap in future.

greygoose profile image
greygoose in reply to Chrys

Oh! That sort of reverting! lol Sorry, not on the same wave-length.

Yes, I know that there are people who insist that you can take T3 with food, that it doesn't bind, etc. But, as I said, the evidence we see on here, proves otherwise.

T3 may be absorbed more quickly than levo, but, first of all, it has to get out of the stomach. It isn't absorbed in the stomach, it's absorbed in the gut. It doesn't go into the gut instantly, it stays in the stomach for a while. So, if you eat straight away - or at the same time - it's going to come into contact with that food.

As far as I know, no-one has ever done any research to find out how long it stays in the stomach. And, as we're all different, it could very well depend on the stomach, couldn't it.

Chrys profile image
Chrys in reply to greygoose

Interesting, of course I don't know if my wife's almost instant reaction to it may partly be its placebo effect, but will certainly leave a gap when possible.

whitepointer profile image
whitepointer in reply to Chrys

I always wait for an hour after taking my NDT until I eat something. Apparently it does affect how the thyroid hormone gets absorbed. But that's just me. Also if your vitamin levels are out that affects it too. I'm a pill popper these days.

whitepointer profile image
whitepointer in reply to Chrys

Probably repeating myself but if Levo(is T4 only) that is what is possibly keeping her feeling like crap instead of super crap. She probably needs T3 as well. Gps and Endos don't usually prescribe that as well unless they arrived from outerspace.

humanbean profile image
humanbean

The body doesn't waste resources by making something it thinks it doesn't need. If your wife is taking T3 in sufficient quantities then her own thyroid (I'm assuming she still has one that functions a little bit) won't bother making T4.

I take T3 only, and my T4 is around 2 with a range of 12 - 22. Some people on the forum have T4 levels of zero. As long as Free T3 is high enough to make the patient feel well then this is not a problem. Bear in mind that some people never feel well unless they take some T4. It is trial and error to find out what works.

If your wife never feels good on T3 only, you could try NDT. There are quite a few brands available.

But at the moment your wife is simply very under-dosed.

Your wife's dose of T3 of 15mcg is tiny. She really needs more. She would probably feel better with a Free T3 level much closer to the top of the range than being right at the bottom or below.

Chrys profile image
Chrys in reply to humanbean

Thanks, pretty much what I thought. She is much better on T3 than T4+T3, so I will hopefully persuade endo to increase dosage.

Chrys profile image
Chrys in reply to humanbean

Thanks HB, yes I am sure she needs more T3 and will argue for it with endo on Tuesday. If no further improvement then try a small dose of T4 with it. If that fails, I have a lot of Naturethroid still from a year or so ago, so can try adding that instead of T4.

As many of us know, it can take a lot of empirical testing to find the right balance for each individual, especially as it is obvious that one size (T4) and TSH tests only, does not fit all, but at last I feel we are getting somewhere.

whitepointer profile image
whitepointer in reply to humanbean

I hope I read this properly so sorry if I'm not understanding what you said. T4 makes T3. Not the other way around. I have reverse T3 problem which means my thyroid wont process T4 into enough T3 it actually bounces back which is called pooling. I don't have e nough T3 and to I still had hyporthyroidism. NDT has all thyroid hormones including minute elements of the other thyroid hormones which makes the thyroid work like it should. Some people if they have Hashitomotos needed addled T3 on top of the NDT.

humanbean profile image
humanbean in reply to whitepointer

T4 is the raw ingredient required for making T3. T4 has 4 iodine atoms per molecule, T3 has 3 iodine atoms per molecule. To make T3 from T4 the body knocks off one iodine atom from the T4.

The thyroid makes some T3 directly, but the majority of the body's T3 is made by conversion from T4 in the organs and tissues of the body.

In a healthy body, if there is a reduced requirement for T3 - for example when someone is ill - then T4 will get converted into Reverse T3. Since Reverse T3 is inactive it slows the body down which is what is required when people need time to get better from illness. Reverse T3 has 3 iodine atoms per molecule just like ordinary T3. But the iodine atom knocked off for reverse T3 is a different one than for ordinary T3.

Another purpose of creating Reverse T3 (other than illness) is to help the body get rid of excess T4, but I'm sure there are other reasons for creating it that I don't know.

.

Patients have discovered that Free T3 level gives a good indication of how badly hypothyroid they are. Too little, and they will be hypothyroid with associated symptoms, too much and they will start suffering with symptoms associated with hyperthyroidism. We all need just the right amount of T3 to make us feel well. And what is right for me probably won't be right for you, we all have our own personal sweet spot.

TSH level has no impact on symptoms. It doesn't make you feel anything. It is T3 that is the all important one. But of course, doctors don't believe that, and only rely on TSH.

.

I've read about pooling. I don't really understand it to be honest. If your body can't make use of the thyroid hormones it produces or has available to it then eventually the body will get rid of it. Some reasons for this so-called pooling is likely to be adrenal problems, other hormones being wrong, nutrient deficiencies... I imagine lots of illnesses could reduce the body's ability to use thyroid hormones too.

.

If you are taking NDT and you still have too little T3 then there are several ways around the problem. You could investigate other conditions e.g. nutrient deficiencies and fix any you find. You could take extra T3. You could switch to T3 only. You could investigate your adrenal health. Which of these would be right for you, I have no idea.

whitepointer profile image
whitepointer

Hi there. Thankyou for being in your wifes corner. I think my family wanted to divorce me at the time I was struggling. It is odd that your wifes levels aren't improved but actually worse after treatment. She may have a reverse T3 problems that an Endo or mainstream GPs don't know about or acknowledge as they are only taught that all they have to do is do a TSH test on a patient if they come in with about 30 symptoms of hypothyroidism. Your wifes TSH is too high. To be optimal it should be 1.00 or under but GPs don't know about an optimal level. I had reverse T3 problem which means my thyroid cant process T4 into T3 properly so T3 builds up in your system by bouncing back and pooling. I wont go into all the crap I had to sort out for myself including the Reverse T3 problem which GPs and Endos apparently don't know about. What helped me and which I would never do in a million years previously was find a Natripath that specialises in thyroid disorders which saved my life. The best way to treat hypothyroidism is NDT (dessicated porcine thyroid). If your wife is menopausal that plays into it as well and which had to be treated until I got optimal. Cheers.

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