Raising t3 to no effect : Hello everyone. I have... - Thyroid UK

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Raising t3 to no effect

Arabella33 profile image
24 Replies

Hello everyone. I have been raising t3 for about 6 months and it’s not having the desired effect. My brain fog has reduced but not by much. I’m on 150 mcg still constipated heart rate in the slow side. My cortisol was SLIGHTLY low at 12 noon and 4 pm. I just don’t know what to do ? Can anyone help with similar issues when raising at this rate I’ll never get optimal.

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Arabella33 profile image
Arabella33
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24 Replies
Lalatoot profile image
Lalatoot

I am not on liothyronine only but that seems a high dose to me. Maybe the dose is too high.

Arabella33 profile image
Arabella33 in reply to Lalatoot

You are right it is a large dose but not according to my labs and symptoms. Some people need supraphysiological doses. And I suppose for some it doesn’t work properly but I don’t know why ?

RockyPath profile image
RockyPath

When you say heart rate increases “sporadically” do you mean at a few odd times during the day, and different times on different days, or that it goes up for maybe 15 minutes and then down for 15 and then back up, in a cyclic fashion? My experience with cycling heart rate while resting is that it’s a primary indicator of having exceeded the amount of thyroid hormone useful to my body.

It’s normal for cortisol to fall after the morning peak, and some of us operate at levels that fall at the bottom of the “normal” range.

If blood is tested for Folate and you carry the very common MTHFR gene, normal folate levels are not any indication that your brain is getting enough methyl folate to function. I require supraphysiologic doses of l-methyl-folate for my brain. And the methyl donor SAM-e. Without these, my brain is rubbish. Sadly there are no regular labs to tell this. It’s disclosed in genetic testing. And proved by the resulting elimination of the brain symptoms.

Our bodies are stunningly complex systems that come in a variety of genetic variations that, as we age, start showing off needs that ordinary labs cannot disclose.

Arabella33 profile image
Arabella33 in reply to RockyPath

I didn’t say that on this post so I think you may be answering another :) it does increase sporadically esp on waking. Stays high for a few minutes and then drops. Usually after eating sugar.

I have hetero mthfr gene and double comt and take folinic acid for it. I did try large dose of methylfolate for a couple of months but that is not my issue.

When I say my cortisol was slightly low I mean lower than what is considered optimal. I’m raising my t3 and my brain fog is reducing but it’s taking so much I’m on such a high dose but my digestive system is still slow and i have brain fog and insomnia...

Thank you for your input ;)

RockyPath profile image
RockyPath in reply to Arabella33

If you’re heterogeneous for MRHFR, the folinic acid is likely inadequate for your needs, and with homozygous COMT, methylation is further complicated and compromised. Methyl sources and methyl donors need to be augmented with COMT or your brain is starved for building blocks of neurotransmitters. Without them in adequate volume, it’s hard to think and hard to sleep.

This article has several tables explaining the COMT process

psychiatrictimes.com/view/p...

There’s plenty of articles explaining why you need to be able to produce neurotransmitters to sleep. Especially l-methylfolate when you have an MTHFR variant and can’t sleep.

Just in case you don’t get anywhere helpful with the T3 and vitamins.

Best of luck 🤞

Arabella33 profile image
Arabella33 in reply to RockyPath

Thanks, I have done extensive research and mthfr hetero and homo comt means I need folinic acid. I don’t know whether the gene is expressed or not. Still trying to get my damn t3 up can’t sleep can’t think but could be anything thank you for your response it’s appreciated

RockyPath profile image
RockyPath in reply to Arabella33

COMT is well known to impact sleep-wake regulation and the variant is implicated in sleep loss: academic.oup.com/sleep/arti...

gwern.net/docs/modafinil/20...

No amount of T3 can fix genes that won't regulate dopamine properly.

Danyosu profile image
Danyosu

Hi, start aip/paleo diet. You will see improvements after the first 3-4 weeks of detox. Check correct supplements.

Arabella33 profile image
Arabella33 in reply to Danyosu

I’m actually trying but I find diets really hard. I did keto for 6 months and couldn’t fat adapt and felt like a zombie

Danyosu profile image
Danyosu

Keto is really not anti inflammatory. Unfortunately if you have autoimmune the only way to be healthy is an appropriate aip/paleo diet

Arabella33 profile image
Arabella33 in reply to Danyosu

Keto is massively anti inflammatory more

So than Aip because it doesn’t have carbs. I struggle with not having carbs.

Danyosu profile image
Danyosu in reply to Arabella33

Well, if you believe keto is anti inflammatory, despite you not feeling better on it, let me not try to convince you. Aip does NOT mean no carbs, it means the right carbs. I wish you all the best

Arabella33 profile image
Arabella33 in reply to Danyosu

Keto is absolutely an anti inflammatory diet but it requires fat adaption to run of ketones effectively and for people to feel well. There are many reasons some people cannot fat adapt. I’ve been doing Aip for a couple of months, I eat sweet potatoes for carbs I know what it means but it hasn’t resolved my issues. I went gluten and dairy few before that. I want to do the elimination phase for 6 months but find it hard to stick to, mainly because it doesn’t feel like it’s working. What’s the point of being on a strict diet if it doesn’t work?

Danyosu profile image
Danyosu in reply to Arabella33

You may need to be followed by a functional doctor who will look at everything, including the right supplements

Arabella33 profile image
Arabella33 in reply to Danyosu

I do have a functional dr but I also find that we have to do most things ourselves. Since we are all different and have different issues and answers to those. I’m taking the right supplements but struggle with motivation to do the diets .... thanks for your suggestions you are right with diet and supplements

thyr01d profile image
thyr01d in reply to Arabella33

you have my sympathy on this Arabella, I have stuck rigidly to a variety of diets some for as long as 2 years with no detectable benefits - just feels like making a miserable life even worse!

Arabella33 profile image
Arabella33 in reply to thyr01d

Exactly, I just did a Lyme and gut test to see if I have chronic infections as something is preventing me from healing.

thyr01d profile image
thyr01d

I'm astonished you are not responding to 150 mcg of T3, not being rude but are you sure that's not 15 mcg? My thyroid apparently produces nothing (TSH = over 95 = coma level) yet the highest T3 dose I can take safely is £50 mcg. If you are taking 15 mcg rather than 150 then you could increase. You seem to know a lot already but just checking - you do know T3 must be started at very low dose and gradually increased don't you?

Arabella33 profile image
Arabella33 in reply to thyr01d

Ha! Yes I’m taking 150mcg. I started at 30. I’ve been doing this a year. I just had an appointment with my dr actually who thinks it’s because of chronic infection like Lyme. My body is not utilising the t3.

thyr01d profile image
thyr01d

Have you been seen by an endocrinologist?

Arabella33 profile image
Arabella33 in reply to thyr01d

No they don’t know anything ;)

thyr01d profile image
thyr01d

Mine does and I'm sure some others do and if I had trusted my GP I'd probably have died (TSH over 95 with 95 being coma level - the lab was desperate for my GP to do something, she said to me casually "the lab's having a hissy fit"). I would urge you not to write off all endos while saying you are so unwell.

Arabella33 profile image
Arabella33 in reply to thyr01d

I’m not sure there are many, since they nhs protocol teaches notoriously bad protocolZ however I’m sure that there is the odd diamond in the rough that understands optimal levels. I am lucky enough to have found a thyroid expert (private gp) who understands optimal levels, different medications, cortisol and how the gut, diet and co infections affect thyroid health as part of a big picture. I still do a lot of my own research and ask opinions and experiences from fellow patients as we all need to be advocates of our own health of course. It’s just that other patients have reported that their endos measure thyroid hormones by TSH! Which is obviously inadequate. Your GP sounds very poor but do bear in mind optimal thyroid health cannot be achieved by measuring a pituitary hormone. In my personal journey I believe I’m likely to have some kind of bacterial infection preventing my thyroid hormones from working properly. An average endo could not help me with this. Very happy you have found some relief with your endo. Hopefully you will continue to feel well and get better.

thyr01d profile image
thyr01d

Thank-you and I hope you too get better.

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