T3 not working anymore? : Following my private... - Thyroid UK

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T3 not working anymore?

Annienixo profile image
18 Replies

Following my private consultation I reduced my levy from 100 to 75 and added in 10 T3 first thing and 10 T3 at midday, the first week I felt great and I lost a two pounds in the process (which was good as not lost weight in ages even with fasting!) but as time as gone on and I am now 7 weeks in and I feel as I was before! I’m going back to specialist with full bloods in a month but just wondering does your body get used to it? Why would it feel like it’s stopped working? Anyone else felt the same? Any advice?

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Annienixo profile image
Annienixo
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SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s and are you still on strictly gluten free diet

What vitamin supplements are you currently taking

Both levothyroxine and T3 need GOOD vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Day before test split T3 dose into 3 doses

10mcg at 7am, 5mcg at 3pm and 5mcg at 9pm (assuming test is 9am)

on T3, make sure to take last third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

You might find it better to split dose like this everyday.....taking last 5mcg dose at 11pm

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Annienixo profile image
Annienixo in reply to SlowDragon

Thank you, when I have my bloods done in a month they will test everything the private endo showed me the request he sent to my gp, I always have it done first thing and don’t take meds. I am on b12, folic acid, vit d3, magnesium following the doc recommendation

SlowDragon profile image
SlowDragonAdministrator in reply to Annienixo

Extremely important to split dose T3 correctly day before test ....last THIRD of daily dose T3 between 8-12 hours before test

Do you have Hashimoto’s

Are you on absolutely strictly gluten free diet

Rather than just taking folic acid, supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help maintain B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

IMPORTANT...If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

When was vitamin D last tested

How much vitamin D are you currently taking

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Annienixo profile image
Annienixo in reply to SlowDragon

Wow lots to think about, not been diagnosed hashimotos. I don’t eat bread, potatoes or pasta that’s what the endo recommended, I take vit d3 3000. The endo told me to take folic acid 400 I wasn’t taking it before seeing him. Would you take b complex instead of b12?

SlowDragon profile image
SlowDragonAdministrator in reply to Annienixo

Presumably you have had thyroid antibodies tested at least once

If TPO or TG antibodies were above range at any test this confirms autoimmune thyroid disease

Suggest you look at all previous test results see if thyroid antibodies have been tested

If you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

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 3-6 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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

SlowDragon profile image
SlowDragonAdministrator in reply to Annienixo

Don’t be surprised if lab only tests TSH

You may need to test privately

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Vitamin D needs testing twice year

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Annienixo profile image
Annienixo in reply to SlowDragon

It’s a private blood test and is a full one, I saw him tick all the boxes not just fsh

SlowDragon profile image
SlowDragonAdministrator

It can take many months tweaking levothyroxine/T3 dose to get levels fine tuned

Come back with new post once you get results

Many of us on levothyroxine plus T3 find we need BOTH Ft4 and Ft3 roughly 60% through range plus all vitamins optimal

AliF profile image
AliF

I’ve tried Levo and T3 combo too with mixed results. Thought it was helping at times. At others seemed to make things worse. After a couple of years I’ve stopped taking the T3 and just take 75 Levo. Don’t feel any different. Still up and down. There are so many variables that can affect your metabolism and how you feel. Very difficult to separate things out. Blood tests don’t give the full story either. Talk to the endo of course, but I would carry on for a bit longer. It might yet come good. I haven’t completely given up on the T3. But it certainly didn’t work miracles for me as it does for some people.

Cat013 profile image
Cat013

Annienixo I felt like that both when increasing levo and also t3. I felt an initial improvement and then after a few weeks I felt worse again or like it wasn’t working. That quickly went away when I increased again. Then the same happened again... I think it happens to a lot of us until you find your your perfect balance. Maybe it means you need an increase or actually that you should have stayed on 100mcg of levo and not dropped. Your lab results will identify where you’re at then you can make any changes. Don’t lose heart as it does happen and may disappear with an increase or slight tweak. X

McPammy profile image
McPammy

If you go over medicated it can feel like being under medicated, well it does for me. Maybe you need to check your bloods and see if your T3 is over the range. Or even try reducing slightly and see how you feel after a few days. Remember T3 has a half life of a couple of days, so if you either reduce or increase it can take about a week to settle again and see how you’re feeling then. I notice that if I take Ferris fumerate for my low ferritin that it boosts me. Not sure how your vitamins are. Same also for me with my B12 injections, that gives me a boost also. My folate and Vit D are both good and need no supplements. Try reducing your T3 ever so slightly to 7.5 twice a day snd if that doesn’t make you feel any better go back to 10 twice a day. It’s a bit tricky at first to get the balance right. For myself I need to keep busy, walking, gardening or anything. I need to use up my dosage or I can find myself going over the T3 range. I’ve lost over 4st since I started T3 two years ago now. It has come off very gradually over time at about 1lb a week at first. Now I’m losing about 1lb every 3/4 weeks. I even eat more than when I was on Levothyroxine alone snd I could never lose weight just on Levothyroxine, fasting, 1000 calls, nothing worked. I am a very poor converter of Levothyroxine to active T3. I did the DIO2 gene test and that came back positive. I’m now on Levothyroxine 75mcg daily and 5mcg T3 twice a day. This seems to be working well for me at the moment.

Popoff profile image
Popoff

Like you I have tried adding the same overall daily T3 dosage to my thyroid medications, but I did not feel at all well. I realised that 20 mcg of T3 per day was far too high for me. Like you, I also reduced my T4 and that brought on a different set of problems. As I was about to give up on T3, i came across an interesting academic article which proposed a method of calculating T4+T3 dosage when one moves from T4 only to a combination therapy and eventually, i found the right dosage for me using this approach. Of course, we are all different and what works for one, may not necessarily work for everybody. It is also clear from the comments made by other thyroid sufferers here that we need to experiment according to symptoms, blood tests and of course advice from endocrinologists. So for someone taking 100 mg of T4 and assuming that dosage normalised their TSH , then when one moves from T4 only to a T4+T3 protocol, then it may be possible to start this with 5 mcg of T3 either as a single dose or split into two, and a T4 of 87.5 mg daily and then adjust once the body gets use to the new dosage! I hope that the above helps and makes the situation better for you.

Gillybean1 profile image
Gillybean1 in reply to Popoff

Hi Popoff

Can you name/post the academic article you found that helped you with calculating individual T4/T3 combo's please ?, i too am having difficulty .

Every best wish G.

Popoff profile image
Popoff in reply to Gillybean1

Hi Gillybean1, please find below the title of the article:

"2012 ETA Guidelines: The Use of L-T4 +

L-T3 in the Treatment of Hypothyroidism" by Wilmar M. Wiersinga, Leonidas Duntas,Valentin Fadeyev, Birte Nygaard &Mark P.J. Vanderpump . It was published in the European Thyroid Journal: June 13, 2012.

I hope that you will find it helpful.

Gillybean1 profile image
Gillybean1 in reply to Popoff

Hi Popoff,

Thank you, thats very kind of you .........more reading to get my brain-fog around Ha ha!

Every best wish to you G

blondpalomino profile image
blondpalomino

Hi,as others have said ,it can take a time for your body to adjust. Also sometimes if you are having too much T3 you can get the same symptoms as not having enough! It will take a time for you to get to the dose you think is right for you.

Also do you have the same brand of Levo and T3 each time?

That can make a difference, I have to keep to the same brands as every time they give me a different one then I get a reaction, some make me overactive with palpitations and some I think are not even working at all!

Annienixo profile image
Annienixo in reply to blondpalomino

My t3 is a private prescription but levy nhs so not coming from same place and not same brand

blondpalomino profile image
blondpalomino in reply to Annienixo

Hi, no I meant do you have the same brand of levo each month, and the same brand of T3 each month, not necessarily both the same brand , if that makes sense!

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