Advice to maybe start T3: Have been on 250mg Levo... - Thyroid UK

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Advice to maybe start T3

pammmy profile image
31 Replies

Have been on 250mg Levo for about 10 years (current brand Almus).

Have felt it's too high recently, and got tested and T4 was slightly over, so past 2 weeks lowered to 200mg. They skipped testing T3 😑 T3 test last year was 1.5 (0.9-2.5) but T4 was lower at .

So I've booked a consult with Roseway labs, hence happy to reduce the Levo in hope to try T3.

Just looking for advice on how to start if they let me try adding T3, and I can afford it.

I've read loads of different things online and recommendations online, but it all gets very confusing.

Thanks

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pammmy
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31 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.

Before you go to Roseway you really need to get a full thyroid panel to include FT3 as they will need to see that.

You also need full vitamin testing as we need OPTIMAL vitamin levels for our thyroid hormone to work well. It also helps with tolerance of T3. Need to get all ducks in a row before starting T3.

Usually dropping 25mcgs Levo and adding 5 mcgs T3 is a good start. 5mcg increments are best as gentle on the system.

pammmy profile image
pammmy in reply toJaydee1507

Hi, thanks for your reply.

My last vitamin test was 2020 😬 my B12 was at the bottom of the range 255 (200-883). Ferritin was 100 (15-200). So I was supplementing B12 with folate. Although I admit I gave in. I go through phases of trying to fix things, then get so frustrated I give up. So here we are again.

The last test results I can find was in 2020, attached.

42, overweight, brain fog, dry skin, thin hair, depressed, anxiety, try to walk 10k steps everyday. Was getting a bit lightheaded when walking which is why I thought I was over medicated. Have possibly been hypo since birth, but medicated about 20 years.

Just did blood pressure for a week for the nurse and she said it was okay (white coat syndrome so jumps in the Dr's).

Jaydee1507 profile image
Jaydee1507Administrator in reply topammmy

Are you vegan or vegetarian? No wonder you don't feel good with such a low B12 result.

I know it can be hard to keep on top of supplements but it really does help and is worthwhile.

Definitely get all the bloods run then come back and make a new post with the results.

pammmy profile image
pammmy in reply toJaydee1507

Thanks Jaydee. They won't do bloods again until August. I agreed with the doc to go to 225mg levo 😕 And he's said they will request the T3 test to be done this time (even though it was requested this time), but we'll see.

Not vegetarian, but don't eat a lot of meat.

shaws profile image
shawsAdministrator in reply topammmy

Those who have Pernicious Anaemia should have a blood test that confirms whether or not that that the patient has Pernicious Anaemia. If we have P.A. we 'have to have' regular blood tests along with frequent B12 injections.

I have P.A. and have a monthly B12 injection to ensure that I have 'optimum' B12. My GP is good and also increased my T3.

My Mother also had P.A. but unfortunately was given 'wrong' information by her GP who told her she no longer needed B12 injections (which was every 3 months) and I believe that was the reason that caused her early demise as she died due to stomach cancer.

pammmy profile image
pammmy in reply toshaws

Thanks for your reply. I asked about B12 injections, but because I was in range they told me just to try supplements 😔

SlowDragon profile image
SlowDragonAdministrator in reply topammmy

Request/insist GP test vitamin D, folate, B12 and ferritin now BEFORE reducing dose levothyroxine

pammmy profile image
pammmy in reply toJaydee1507

Hi again. Did the monitor my health check up, need to redo the vitamin/cholesterol ones as blood had congealed. But got the thyroid ones back -

pammmy profile image
pammmy

2020 results

Lab results 2020
Jaydee1507 profile image
Jaydee1507Administrator in reply topammmy

Thats only a total T3 test which we don't use. No idea why the NHS might think its relevant.

Your FT4 was only 63% of the range then so you had a way to go with increases.

Your antibodies were positive meanign you have Hashimoto's or autoimmune hypothyroidism. Have you tried a strictly gluten free diet?

You really must get a full thyroid panel done privately + the vitamin levels.

pammmy profile image
pammmy

What would be the minimum test needed for the thyroid panel, FT3 and FT4?

I haven't tried gluten free, as my sister has coeliac and had a nightmare trying to find things to eat. Also if eaten accidentally, your body can't tolerate it. I might read up on it again though now.

Jaydee1507 profile image
Jaydee1507Administrator in reply topammmy

This monitor my health test is the cheapest for TSH, FT4 & FT3. Use discount code from the link I posted above to get it cheaper. monitormyhealth.org.uk/thyr...

This £65 test, cheaper with discount code, also tests key vitamins. You really need that as your B12 was so low and you likely need to restart supplements. monitormyhealth.org.uk/full...

Gluten free options are available about everywhere these days. So many differnt options and it may well help you a lot.

SlowDragon profile image
SlowDragonAdministrator in reply topammmy

You should have been tested for coeliac when your sister was diagnosed….if that didn’t happen

And especially as you have Hashimoto’s GP should do coeliac blood test BEFORE you cut gluten out

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

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

Hashimoto’s and leaky gut often occur together

Both dairy and gluten are inflammatory foods

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.

SlowDragon profile image
SlowDragonAdministrator in reply topammmy

If you’re going to get private test…..include vitamin D, folate, B12 and ferritin if GP not helpful

all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

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

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

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

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

pammmy profile image
pammmy in reply toSlowDragon

Thanks for all the info.

I think I'll order the monitor my health test that includes the vitamins and see what that says, then go from there.

pammmy profile image
pammmy

Test results. Clearly I can't work the forum yet 😂

Thyroid test results
tattybogle profile image
tattybogle in reply topammmy

Tagging SlowDragon and Jaydee1507 for you ~ so they will now see you have added results.

(you replied 'to yourself' ~ people only get an 'Alert' notification if you use the reply box directly under their reply :) )

Jaydee1507 profile image
Jaydee1507Administrator in reply topammmy

There are a number of gremlins working withthe forum at the moment so don;t blame yourself. Posting a picture can be a challenge!

Have you had your Roseway appointment?

Free T3 (fT3) 4.4 pmol/L (3.1 - 6.8) 35.1%

How did you take the test? What time of day was it? Important as highest TSH is usually 9am which is when its best to book a test.

Did you take your Levo before the test?

Your FT3 is too low. It would be better above 50% and possibly needs to be around 70% for some people.

It may be that getting vitamins to optimal would improve your conversion. I would certainly recommend getting all key vitamins - ferritin, folate, B12 & D3 to OPTIMAL before starting T3 as low levels can cause intolerance of T3.

Did you get vitamins tested?

What supplements are you taking?

pammmy profile image
pammmy in reply toJaydee1507

Hi, thanks again for replying.

I did the test about 8.50am and got it posted before 12pm.

I didn't take my levo the day before, usually take it at night. I've not taken any supplements for about a month.

I had my appointment with roseway labs and they said I probably have conversation issues. I ordered thybone henning T3 to try, but wanted to wait until my results were back to start.

Vitamin D was 46nmol which Google seems to think is fine, I've been out in the sun loads walking recently.

Waiting for a new test kit for the B12, ferritin etc. I probably won't be able to do it until next Monday as away this week.

Jaydee1507 profile image
Jaydee1507Administrator in reply topammmy

46 is not a good number for vit D. It should be 100-150 for best use of thyroid hormone. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many people like the Better You range of mouth sprays that include vit K2 .Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

You will need to drop around 25mcgs Levo to add any T3. Suggest starting with 5mcgs then wait 2 weeks to add a further 5mcgs.

It would really help you before you start T3 to get vitamin levels to OPTIMAL.

pammmy profile image
pammmy

SlowDragon Jaydee1507  Hi, finally got my anaemia test done and results attached. Do you guys have any advice on these results please? They state normal except TSAT.

Anaemia results
Jaydee1507 profile image
Jaydee1507Administrator in reply topammmy

Do you have the ranges for these tests? Both look low but I need to be sure. Ranges vary from lab to lab so it is important to quote them.

pammmy profile image
pammmy in reply toJaydee1507

They didn't provide ranges from Monitor My Health. I'll email and ask them. They are pretty slow with no contact number.

SlowDragon profile image
SlowDragonAdministrator in reply topammmy

That’s B12 and folate (not iron and ferritin)

Both B12 and folate too low

Do you have any Low B12 symptoms ?

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply topammmy

So presumably you are now working on improving low vitamin D

Retest in 3-4 months

Aiming for at least around 80nmol minimum and around 100nmol may be better

Many (most?) thyroid patients need to supplement vitamin D, vitamin B complex and magnesium continuously to maintain optimal levels

Have you had coeliac test done

Are you now trailing strictly gluten free diet

pammmy profile image
pammmy

Part 2

Anaemia results
SlowDragon profile image
SlowDragonAdministrator in reply topammmy

Are you taking iron supplements?

pammmy profile image
pammmy in reply toSlowDragon

No I wasn't taking any vitamins supplements. Test was done this Monday. I think I took vitamin C 2 weeks prior when had a cold, I've read that makes you absorb iron more though🙈 I stopped any supplements about 1 week before I did my thyroid tests, just had a lot of back and forth with Monitor my Health(MMH) so it took a while to get the full lot done.

Yes I have a few of the - B12 symptoms. But these mirror the thyroid symptoms also like tired, depressed, anxiety, brain fog. I was a little dizzy on/off recently too.

No cealiac test done as of yet. Not trialled gluten free yet either. Have been waiting on the MMH tests first.

SlowDragon profile image
SlowDragonAdministrator in reply topammmy

Request GP do coeliac test or get £20 online via Lloyds pharmacy

Only add one supplement at a time or make one change at a time …..wait 10-14 days between

So initially start B12

Then add vitamin B complex

Then trial gluten free

Then dairy free

pammmy profile image
pammmy in reply toSlowDragon

The coeliac home tests online tend to say more just for gluten sensitivity, rather than actual coeliac.Would that be sufficient?

SlowDragon profile image
SlowDragonAdministrator in reply topammmy

selph.co.uk/tests/coeliac-d...

Assuming test is negative it’s ALWAYS worth trying strictly gluten free diet

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

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