Starting T3 combination: Hi Everyone. Hope you're... - Thyroid UK

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Starting T3 combination

VEG71 profile image
24 Replies

Hi Everyone. Hope you're good. Just wanted to ask for some advice please before I start T3 combination meds/trial prescribed by Endo. Will be starting T3 5mg once daily. My thyroxine will be reduced to 85mcg once daily. I was taking 100mcg. Its a 2 month trial. Timings of meds, anything I should be aware of etc.. Thank you in advance, the expert advice here has been invaluable.

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VEG71
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SlowDragon profile image
SlowDragonAdministrator

What are your most recent TSH, Ft4 and Ft3 results and ranges

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Do you always get same brand levothyroxine at each prescription

What are vitamin D, folate, ferritin and B12 results

what vitamin supplements are you taking

VEG71 profile image
VEG71 in reply to SlowDragon

Hi yes, same brand levothyroxine, the endo checked all the vit levels, I have asked for the print out, will chase again, said all was OK. I take vit D, vit B complex, iron , zinc, selenium following advice from here. Magnesium, fish oil too.

SlowDragon profile image
SlowDragonAdministrator in reply to VEG71

Remember to stop vitamin B complex 5-7 days before test

And full iron panel test 2-3 times year if taking iron supplements

Obviously essential to know what your actual Ft4 and Ft3 results are BEFORE changing dose

If Ft4 21 (12-22) …..then dose reduction Levo likely necessary

If Ft4 17 (12-22) dose reduction in levothyroxine may not be necessary

If Ft4 15 (12-22) you need dose increase in levothyroxine

VEG71 profile image
VEG71 in reply to SlowDragon

Thank you!

SlowDragon profile image
SlowDragonAdministrator

Looking through all your previous posts can’t see any test results for thyroid antibodies

Have you EVER had TPO and TG thyroid antibodies tested for autoimmune thyroid disease also called Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Previous posts show low vitamin levels in past

Before considering adding T3 you need GOOD vitamin levels

previous post year ago - you were going to come back with results

healthunlocked.com/thyroidu...

VEG71 profile image
VEG71 in reply to SlowDragon

Hi I had antibodies checked, very high, so they won't do again. That indicates Hashimotos right?

SlowDragon profile image
SlowDragonAdministrator in reply to VEG71

So yes high thyroid antibodies confirms Hashimoto’s

Have you had coeliac blood test

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

Low vitamin levels affect Thyroid hormone working

Poor gut function 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 or buy test online for under £20, just to rule it out first

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...

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

Hashimoto’s and leaky gut often occur together

Post discussing gluten

healthunlocked.com/thyroidu...

VEG71 profile image
VEG71 in reply to SlowDragon

Thanks for the info, will go into gp surgery tomorrow to ask for a recent print out, recent vits and gluten were checked. If not will sort out a private test before starting the combo. Thanks again for the advice!!

SlowDragon profile image
SlowDragonAdministrator in reply to VEG71

You never came back with actual Ft4 and Ft3 results or vitamin levels

Are you on strictly gluten free diet now

VEG71 profile image
VEG71 in reply to SlowDragon

No goitre

Hashiboy profile image
Hashiboy

Good luck  VEG71 i take a combo of 47.5mcg T3 and 25mcg T4 advised by current endo. It took nearly a year to get to a dose that mostly suits me. I was first given a two month trial of 20mcg T3 and 85 T4 it left me much clearerer headed but exhausted and so the trial was ended. It wasn’t until I saw someone more confident in T3 prescribing and worked at it for a year that I improved. So I wish you good luck and hope that dose works but don’t be fobbed off or told T3 didn’t work if things still aren’t right a two months, that’s such a short time.

VEG71 profile image
VEG71 in reply to Hashiboy

Thank you for your reply, so great you are feeling better now! Are u still under an endo? I have started yet, they haven't talked about adjustments to the doses, also really reduced throxine, hoping to have a chat with consultant.

RoseStar profile image
RoseStar

I’ve been started on T3 5mcg twice a day as a low dose apparently and told to take it in morning with levo and then another at about 3/4pm! I’m nervous to start it as always seem to get side effects 🫣

VEG71 profile image
VEG71 in reply to RoseStar

I'm nervous too, worried I have such a low dose! How are u doing now?Thank u for replying!

KCFryer profile image
KCFryer

Hi! I'm in the third month of a trial with liothyronine and I can tell it has made a huge difference in my life. I take 10mcg lio (5mcg twice a day) and 112mcg levo. During the first month I didn't reduce my levo and only took 5mcg a day. I felt great for a week but then the fatigue came back. As my Ft4 was at the top of the range, I decided to lower my levo to 112mcg and increased the lio to 10mcg a day. It's been two months now and I feel very well, even some symptoms I didn't expect to get rid of, went away, such as joint pain and abdominal distension. I'd advise you to lower your levo if it's on the top of the range like Slow Dragon suggested. I take my levo on its own when I go to bed and the lio in the morning and after lunch time. That's how it works for me. Now my bloods are optimal like it was before lio, but I'm no longer symptomatic. All the best!

Hashiboy profile image
Hashiboy in reply to KCFryer

Great to hear a positive story KCFryer like you i lost the horrible uncomfortable gut distension. i was 10 kg overweight and belly like a pregnant elephant on T4 only. The gut distension went in weeks on T3 and I lost the 10kg in about six months.

KCFryer profile image
KCFryer in reply to Hashiboy

Hi Hashiboy! I've found so much comfort, information and encouragement in this group. I've been a hypothyroid for around 30 years now and never really could talk or understand this condition and my symptoms until I moved to England and became really ill. Thank you for celebrating with me and for sharing your experience! Now I know why that distension was getting worse and worse and that wasn't my imagination. I'm really looking forward to losing 10 to 15kg I've put on over the last 3 years. I wonder if only 10mcg a day will help me. I considered taking an extra 5mcg a day, as I'm tolerating liothyronine better than I expected, but I've just started this journey and feel I've got enough for now. Thank you again!

VEG71 profile image
VEG71 in reply to Hashiboy

Fantastic, sounds like my belly!

VEG71 profile image
VEG71 in reply to KCFryer

That's amazing! Do you buy T3 or via endo? Thanks for replying it's great to get an understanding of all this and to know the how others manage this. 😀

KCFryer profile image
KCFryer in reply to VEG71

I had to persevere and wait a lot to try T3 through NHS. I wanted them to accept I needed T3 rather than having to source it myself. I've had no side effects sticking with the brand Morningside.

VEG71 profile image
VEG71 in reply to KCFryer

That's good to hear! Thank you!

jgelliss profile image
jgelliss

I can tell you from my own experience. When my Endo first started me with 5 mcg T3 he as well lowered my T4 . I felt awful. It felt like I'm being set up for failure with the added T3. If you feel well enough on your dose of T4 just need a bit of a boost I would not lower the T4 knowing what I know now. For myself I learned with time that I need enough of T4 for my T3. Did your Dr tell you why he was lowering your T4 dose? Sometimes I feel that some Dr's have very little knowledge when it comes to T3 or NDT dosing.Best wishes with your success of adding T3 .

VEG71 profile image
VEG71 in reply to jgelliss

Thank you for replying, how are you now? Yes this is why I haven't started, feel I need more of a conversation and they lowered the T4 to 85mcg! Thanks for sharing your experience & insights.

jgelliss profile image
jgelliss in reply to VEG71

From my own experiences I can tell you that if my T4's are are fine and adding a small dose T3 that works best for me. Some might feel differently. It's not one size fits all. It has to be tailor made. It took me a very long time to learn what does and doesn't feel right for me. Best wishes.

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