No levo: feeling much better. What is going on? - Thyroid UK

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No levo: feeling much better. What is going on?

Moore-23 profile image
30 Replies

I am hypothyroid with Hashimoto's. I stopped taking 100mcg levothyroxine for a week in preparation for taking thyrogold. I felt much better not taking it (the levo.) I started taking thyrogold about a week ago - 150mcg was ok for a few days and had mountains of energy (but felt very hot) but by Wednesday evening could not sleep all night (literally). I was also extremely hot to the point of having hot flushes.

I am menopausal but I luckily do not get hot flushes (or very few). My main problem is lack of energy. In the past I had had problem sleeping but that seems to be righting itself.

I stopped taking 150mcg thyrogold and left it for a couple of days. (Not taking anything but felt fine.)

I tried taking about 75mcg of thyrogold and again could not sleep until 4am when I took amitriptyline which got me to sleep. It wrecks me for the next day though as I sleep in and lose half the day.

What is happening: in that I definitely feel better not taking levothyroxine. Surely I should take something? (BTW - I have never felt good on levothyroxine despite 13 years of taking it. Admittedly, I have just moved up to taking 100mcg levo just before Christmas.)

What is happening with the thyrogold? Should i persist with that?

I need to look for a job very soon and I need to get my energy and sleep levels sorted.

Any help at all would be much appreciated! :-)

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Moore-23 profile image
Moore-23
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30 Replies
MichelleHarris profile image
MichelleHarris

Gosh Moore-23 Im taken 2x300mg ThyroGold and Tiromel 10mg and I dont feel like that! Intetested to hear what the knowledgeable people make of it x

Moore-23 profile image
Moore-23 in reply to MichelleHarris

I am absolutely bewildered to tell you the truth. I think I am better because I have been building up my vitamin levels based on what people have been advising here. That has been tremendously helpful.

Just ordered a full blood thyroid vit check (15% off today at Medichecks ;-)) so will retest to see if I can spot anything.

Maybe I am allergic to the brand of levo I am taking (always been ALMUS)/I have always taken. I have taken 25mcg of Teva levo when I was topping up 50mcg from doctor. I have heard that some people do not do well on Teva but I did not take those for very long.

Am totally mystified so would love to hear what others say too!

My cortisol levels are a bit dodgy I think. Should probably do cortisol test. Any tips on good adrenal supplement would be fab. Am trying to take nutri adrenal extra tablets but they are big tablets. They are hard to swallow and do not taste too brilliant!!

How are you doing on the Thyrogold and Tiromel? That sounds interesting too!

SeasideSusie profile image
SeasideSusieRemembering in reply to Moore-23

Moore-23

My cortisol levels are a bit dodgy I think. Should probably do cortisol test.

If you are going to do an adrenal test then choose one which tests both cortisol and DHEA, not just cortisol alone.

Regenerus: thyroiduk.org/tuk/testing/r... - they email you direct when results are ready

Genova Diagnostics: thyroiduk.org/tuk/testing/g... - they send results to ThyroidUK who send them on to you when they've received your consent form (on TUK's website)

Any tips on good adrenal supplement would be fab.

Impossible to know what adrenal supplement you would need until adrenal test results are received. Different supplements for high cortisol than you'd take for low cortisol.

Am trying to take nutri adrenal extra tablets but they are big tablets. They are hard to swallow and do not taste too brilliant!!

Without having tested adrenals, you don't know if Nutri Adrenal Extra is the right supplement for you. It's an adrenal glandular (adrenal and pituitary gland extracts) and that would be used for raising cortisol. You certainly wouldn't want to take that if your cortisol was already high.

Moore-23 profile image
Moore-23 in reply to SeasideSusie

Thank you for that. It is very much appreciated. You are right I should get the right cortisol test done. Thank you for the links!

greygoose profile image
greygoose

Impossible to tell you what's going on without seeing blood test results - full blood test results: TSH, FT4, FT3. Could be you don't convert very well, and that's why you were never well on levo. Then again, you didn't give it a fair try if you stopped taking it just after you got to 100 mcg, which is still a fairly small dose.

However, it is a well-known phenomena that when you stop taking thyroid hormone replacement, of any type, you will feel 100% better for a while and start to believe you never needed it in the first place. It happens to just about everyone. Unfortunately, this feeling of euphoria doesn't last, and sooner or later the symptoms of hypo will come creeping back in again, until you are forced to restart the pills. And, nobody knows why this happens.

What time of day were you taking the Thyrogold? Were you taking it on an empty stomach, etc. just like levo?

Moore-23 profile image
Moore-23 in reply to greygoose

OK. That would make sense then. Just when I thought I could stop everything!

Yep. I was taking the thyrogold on an empty stomach like the Levo and leaving an hour before I ate or drank tea/coffee.

I wonder if I have to take an even smaller dose of thyrogold and work my way up? What do you think?

greygoose profile image
greygoose in reply to Moore-23

I have no practical experience of Thyroidgold, and no idea of the T4/T3 content. But, I'm wondering if perhaps you're not taking enough.

Do you have a copy of your labs from when you were taking 75 mcg levo?

Moore-23 profile image
Moore-23 in reply to greygoose

I did this test on Dec 2nd when I was still on 75mcg (levo):

TSH 0.612 mIU/L (0.27 - 4.2)

FT3 3.84 pmol/L (3.1 - 6.8)

FT4 18.600 pmol/L (12-22)

Thyroglobulin antibodies 476 kIU/L

Thyroid Peroxidase antibodies 160 kIU/L

greygoose profile image
greygoose in reply to Moore-23

Yes, you are a poor converter. You do need the T3 in Thyrogold. But, as I said, I have no idea how much it contains. Do you know? Could be that it doesn't contain enough T3 for your needs.

Moore-23 profile image
Moore-23 in reply to greygoose

I think from what I have read that it is quite strong. I must admit that I have been a bit impatient and I have not been doing all the checks and balances as recommended by Dr. Lowe on the website I.e. basal temperature, blood pressure, pulse etc. so I should do those.

I am just wondering whether I raced in too quickly with the dosage given that I am not used to much T3.

I felt as if I was on speed with the 150mcg capsule: very energetic, very hot, my heart was pounding and I felt very wired. My body temperature seemed to shoot through the roof especially at night. When I am not taking it I do feel the cold and my fingers have gone back to feeling puffy.

The lower dosage of 75mcg felt better apart from not sleeping again.

I have read from another post that 150mcg thyrogold = 100 mcg levo = 1 and a quarter grains of NDT. I think this all came from the PaulJones' blog originally.

Maybe I could experiment with the smaller doses and work my way up?

Do you think it would be worth doing the cortisol test too? I have always had a bit of a problem with sleeping and wake up. If I eat a banana I generally get back to sleep again (when not taking thyrogold!)

greygoose profile image
greygoose in reply to Moore-23

Yes, impatience will get you nowhere except back to square one. I think you do need to experiment with doses - and splitting doses - to see what suits you best. And if 150 mcg thyrogold does equal 1.5 grains NDT, then that would be somewhere around 15 mcg T3, which is too high to start on.

I really do think it would be worth doing the cortisol test, yes. From Regenerus or Genova Diagnostics, is best.

Moore-23 profile image
Moore-23 in reply to greygoose

Thank you. Yes, I can see what you are saying. Impatience runs through me like a stick of rock but I will try and be cautious here. It just not worth the misery of making myself ill. Many thanks to you and SeasideSusie

Moore-23 profile image
Moore-23 in reply to Moore-23

...for all your time and advice. :-) xx

greygoose profile image
greygoose in reply to Moore-23

You're welcome. :)

Moore-23 profile image
Moore-23 in reply to greygoose

Thank you for all your advice. It is really appreciated! I am just impatient to get some energy back!! :-)

sidneymark70 profile image
sidneymark70 in reply to greygoose

You’re so knowledgeable Greygoose. I’ve never heard of Levogold. What is it. I am currently SO tired, I just don’t want to get out of bed! Have hashis and taking 100mg one day, 75 the next (Almus). I have noted a thyroid/vit test at Medichecks. And if I can afford, will have it. I really need to make the most of my latter years and cant at the moment. Just want to stay in bed!

greygoose profile image
greygoose in reply to sidneymark70

Thyrogold is a form of NDT, which is to say that it's natural thyroid, with T4 and T3 in it. But, I can't tell you much more than that, except that it has to come from the US, so can work out quite expensive, I believe. :)

sidneymark70 profile image
sidneymark70 in reply to greygoose

Thank you Greygoose. So you have to have this prescribed privately. My GP is very kind but the Levo I take on the NHS doesn’t seem to give me the energy I crave.

greygoose profile image
greygoose in reply to sidneymark70

As I said before, I don't know that much about it, never taken it, but it is OTC because it doesn't state how much hormone it contains. But, I have no idea how you get hold of it. I imagine you buy it on-line.

Moore-23 profile image
Moore-23 in reply to sidneymark70

I have just sent you a private message about where and how you can obtain it. :-)

hendb profile image
hendb

Moore-23 i know what you feel last year i toop up to 150 levpthyrox and 40 T3, I stopped everything and was feeling exactely the same as wihtout medication (tired etc...)

one year after, im back on this website, and im going to give thyro-gold a try. my question : how do you manage to take 75mg of it?? you empty the cap?

Moore-23 profile image
Moore-23 in reply to hendb

I split the capsule by taking the capsule apart. The top screws off and you can tip it out. I did buy some empty capsules from a supplier in London (Baldwins). I think I can safely say that as they do not contain anything!

Someone else who takes thyrogold has just messaged me privately that she tips the thyrogold capsule onto a dish and then splits out the thyrogold mixture into sixths. She takes a sixth for 2 weeks and then another sixth for 2 weeks and so on until she feels better on whatever level it happens to be.

I am going to try this to see what happens. Hope this helps! :-)

hendb profile image
hendb in reply to Moore-23

It helps a lot yes!

Im just 3 days in (150mg) so still nothing happening. Do you remember when you start noticing first effects?

Also I wonder if we could take it under the tongue once the cap is open :/

Moore-23 profile image
Moore-23 in reply to hendb

I started on the Saturday and by Tuesday I was noticing something. This never happened with the levothyroxine I have had more effects from painkillers than levo. Zero. Zilch. Nada.

That is why I was so amazed by the thyrogold but we are all different. Someone else taking thyrogold has told me that they take 150mcg and do fine on it but it took 3-4 weeks for it to begin to take effect on them. They have not upped their dose. They have stayed on it and now feel totally fine.

I would keep at it especially if no bad effects. Fingers crossed it works for you.

I will try the slow and steady approach to see what happens...:-)

Moore-23 profile image
Moore-23 in reply to hendb

About the sub lingual...not sure. Again some people empty out the capsule and take it directly that way. You could try it and see I suppose.

Moore-23 profile image
Moore-23 in reply to hendb

Sorry...I am a language teacher...I slip into it...without realising...under the tongue/sub lingual. Sub lingual sounds very doctorese- apologies!!!

hendb profile image
hendb

I’m french and sublingual is easier to understand :)

Thank is a lot for your precious help

Me neither Levi NEVER helped me nor did anything to me. Same for t3 / t4. I took very high doses of both and nothing

Finger super crossed for thyro-gold

M’y issue isn’t that it takes months for delivery here

Also I’m not patient at all... like you :)

Moore-23 profile image
Moore-23 in reply to hendb

Formidable! Lovely to hear that- I just love languages!!!

My thyrogold order was placed on Boxing day and was here within a week/10 days but if you are in France that might be another issue.

Hope it goes well for you. Bonne chance!

SlowDragon profile image
SlowDragonAdministrator

As greygoose said

However, it is a well-known phenomena that when you stop taking thyroid hormone replacement, of any type, you will feel 100% better for a while and start to believe you never needed it in the first place. It happens to just about everyone. Unfortunately, this feeling of euphoria doesn't last, and sooner or later the symptoms of hypo will come creeping back in again, until you are forced to restart the pills. And, nobody knows why this happens.

I can certainly vouch for this .....

Initial feeling wonderful might last a week...ten days ...then an almighty crash

Only worth doing Medichecks test after 6-8 weeks on constant unchanging dose

Your results on 75mcg show very poor conversion

Low vitamin D, folate, ferritin and B12 levels can badly affect conversion of FT4 to FT3

Moore-23 profile image
Moore-23 in reply to SlowDragon

That is a good point or rather, several good points! The blood checks are expensive even with 15% off. I will save it up for using when I have been on a constant unchanging dose.

I have also ordered a Regenerus cortisol test (with DHEA) as I looked at the thyroid UK link and I ticked nearly every box for cortisol problems.

I have been supplementing as much as I as I can but if I have adrenal problems then those will take their toll.

Many thanks for your feedback. I was feeling a bit lost last night and it is so good to talk to you all and compare experiences! :-)

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