T4/T3 - need a plan B and would appreciate your thoughts

[Zebra5]

I last posted 18 days ago and FallingInReverse very kindly helped me get my thoughts in order. As a result of this I came up with a plan. For reference, my post is here: healthunlocked.com/thyroidu...

You will see that the plan was to increase my T3 from 7.5mcg/day to 10mcg/day. I have been doing this over the last two and a half weeks but it is just not working and I have been feeling worse and worse. I feel I have now given it enough of a go. I do not seem to be able to manage 10mcg of Lio with 100mcg of Levo. This dose makes me feel awful: hot, puffy eyes and face, headache, tired more quickly, achy, bloodshot eyes, lacking interest, energy and enthusiasm. I just want to curl up. It is confusing as many of these are under-medicated symptoms too.

I think, therefore, that I should probably start by reducing the T4 instead. This is something deliberated by FallingInReverse and me as I don't convert particularly well and it may cause my T3 to drop. Question is, by how much? Shall I start with reducing from 100mcg to 87.5mcg every day do you think? Or just on, say, three days a week? I don't want anything too dramatic. I know how hard it is to claw your way back up once you've gone down too far. Don't we all! Thank you so much xx

[greygoose]

On the other hand, if you reduce your levo/FT4 your T3 might increase. At the moment your FT4 is so high it will be mostly converting to rT3. Bring down the level of T4 and more should convert to T3.

[Zebra5 in reply to greygoose]

Thank you for your help greygoose What would you recommend I reduce the T4 to?

[greygoose in reply to Zebra5]

12.5 mcg a day, I would say, to begin with. You might need to reduce further after six weeks.

[Zebra5 in reply to greygoose]

Thank you greygoose I will change the plan to 87.5mcg T4 and 7.5mcg T3 for the next eight weeks and then re-test.

[greygoose in reply to Zebra5]

You're welcome.

[SlowDragon Administrator]

Are you now using postal pharmacy?

which brand of Levo is your 100mcg

Is it always same brand

Are you on gluten free and/or dairy free diet or tried either

[Zebra5 in reply to SlowDragon]

Hi SlowDragon Thank you for your reply. I am not using a postal pharmacy as decided to stick with the pharmacy at the GP Surgery in the end, despite the faff. Brand of Levo is Teva and it is always the same brand. I have been thinking of changing to Accord but haven't yet as didn't want to change everything at the same time. I have not trialled gluten free or dairy free.

[SlowDragon Administrator in reply to Zebra5]

I would suggest

A) trying Vencamil Levo …..this is often much better than Teva for many people

Vencamil is lactose free and mannitol free

originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva upsets many people

2-3 months after changing brand levothyroxine

B) get coeliac blood test BEFORE trialing strictly gluten free diet

C) 3-4 months after going gluten free trial dairy free too

[Zebra5 in reply to SlowDragon]

Thank you very much SlowDragon I will look into Vencamil and your other recommendations.

[SlowDragon Administrator in reply to Zebra5]

Gluten free diet may reduce feelings of anxiety

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...

[Zebra5 in reply to SlowDragon]

Thank you SlowDragon

[FallingInReverse]

Very glad to hear I helped you get your thoughts in order!

Also fun for me to read my replies from 17 days ago… my last move was to reduce Lio by 2.5 because my ft3 was over range. Even though my ft4 hovers around 50% through range … I chose to reduce ft3 first before increasing Levo. Since January I’ve been on 112 Levo and 7.5 Lio.

So now 17 more days in the lower ft3 certainly calmed my palpitations. But now I’ve slid into that warm puffy fatigue that I haven’t felt in a long time - propped up by too much t3 I was!!!

This disease is a full time job sometimes!

[Zebra5 in reply to FallingInReverse]

Hi FallingInReverse Thanks for your reply. I'm sorry your last move hasn't quite worked out. What will you do now? Increase to 125 Levo per day? It is a full-time job sometimes - thank goodness for this forum. It is such a sanctuary as everyone 'gets it' and the advice is so helpful.

[FallingInReverse in reply to Zebra5]

Well I had to bring my ft3 down in any case so it was the right move. I was over range on ft3 results for a while and it definitely needed to come down.

Also I just looked and my latest ft4 and it is closer to upper 50’s/60% through range. A bit higher than I thought- but I’m definitely increasing Levo next.

It’s been 8 weeks since dropping ft3, and 2 weeks since last bloods. I’m gonna get my act together and test/titrate very soon.

It’s the puffy eyes that are killing me at the moment !!

[Zebra5 in reply to FallingInReverse]

Good luck. Look forward to hearing how you get on x