Time for T3?: Hi all So I think I am a poor... - Thyroid UK

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Time for T3?

RuthieRuth profile image
18 Replies

Hi all

So I think I am a poor converter (test results and history to date in the attached photo - hopefully you can see it all) and need to trial some T3. I have a consultation booked with R Labs for next week but am now wondering whether that is a waste of time as I see from posts I was reading last night that they may have stopped prescribing T3 to people not under the care of an endocrinologist.

I now have private medical insurance so was wondering if anyone here could give me some guidance on the best route to finding someone who understands T3 etc?

Background in my bio.

Current symptoms - still very tired, impossible to lose weight in the usual way, depression, some exercise intolerance still.

Vitamins need work. Tried gluten free a few times and it seemed to make no difference - my love for pizza means that is really a last resort option for me!

Thanks in advance for any guidance or pointers!

PS also curious about the suddenly suppressed TSH results - I was flying around the world and ate so much that when I got home I ate almost nothing, so suspect that is what caused it.

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18 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Its highly recommended to get all key vitamins to optimal before adding in T3, otherwise intolerance of T3 might result.

Optimal vitamins also help conversion.

In the first instance you need a Levo dose increase or even more. TSH currently far too high and FT4 only 34% through range.

Are you always taking Levo on an empty stomach, an hour before anything other than water?

Where is the suppressed TSH result? Latest I can see its 4.59 and above the range?

You can email info@thyroiduk.org for a list of T3 friendly Endo's. Pick a couple and make a post asking for feedback by private message only.

RuthieRuth profile image
RuthieRuth in reply toJaydee1507

Yes empty stomach and at least one hour before food/coffee.

TSH went to 0.02 in June this year - although FT4 and FT4 levels well within ranges and wasn't going to accept the GP's suggestion that I was overmedicated on 50mcg when I weigh over 80kgs so carried on increasing slowly.

My challenge is that I can't do the finger prick tests properly so get them to take extra blood when I get my NHS blood tests - it always seems to clot and MMH say they can't test my vitamins because of that... :-( Will need to try and teach myself how to do the finger prick without fainting. Or find another way to test vitamin levels

Jaydee1507 profile image
Jaydee1507Administrator in reply toRuthieRuth

In June, did you change the way you take your Levo or tae the test, because FT4 was good then too? FT3 wasn't so awful either. How did you feel then?

It could just be you had a bit of a hyper swing which is quite possible.

Randox offer a Tasso device which is an improvement on finger prick blood testing. Cost is around £30 or you could do a Medichecks or Blue Horizon test and use their blood draw service.

healthchecks.randoxhealth.c...

RuthieRuth profile image
RuthieRuth in reply toJaydee1507

No still first thing and an hour+ before food/coffee, though I did change timezone by 12 hours three times in two weeks, so definitely wasn't on a 24 hour routine. I felt exhausted before the test (too much food, too much travel, not enough levo or sleep), then by the time I was home and testing I felt quite wired, the way I always feel when I reduce calories a lot - that sort of hungry-energetic feeling. Didn't feel hyper in the way I felt when I started on 100mcg off the bat the year before

SlowDragon profile image
SlowDragonAdministrator

was test early morning and last dose Levo 24 hours before test

Retest again in a further 8 weeks after increasing to 125mcg

Which brand of Levo are you taking

Do you always get same brand

What vitamin supplements are you taking

ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually, ideally twice year

Is your hypothyroidism autoimmune

How much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

RuthieRuth profile image
RuthieRuth in reply toSlowDragon

Diagnosed with hypothyroidism as part of IVF process in June 2023. Still trying to find the right level of medication to get my thyroid levels stable.

Weigh around 82kgs, 43 years old (pre-menopause), probably undiagnosed for at least 10 years or so.

Also have stable vitiligo and Reynaud's Phenomenan. Suffer from PMDD (extreme PMS) sometimes - this seems better when that time coincides with a levo increase. Used to have some exercise intolerance and recently discovered I have exercise-induced asthma and rhinitis, which an inhaler and nasal spray have basically fixed.

Negative for celiac, negative for Hashi/Ords antibodies.

Not vegetarian (the opposite). Generally v healthy diet. Lift weights 3/4 times per week, 2 HIIT sessions per week. Walk the dog everyday.

Very compliant with my medication (always at least an hour before food/coffee) and testing protocol (as close to 9am as possible and no levo for 24hours beforehand).

Supplementing vitamin D and K daily, erratic B12 and folate supplementation at the moment.

Started on 100mcg Accord back in June 2023 and was WIRED within 10 days and had to come off it for fear of destroying all my relationships and my job. Braved a restart on 25mcg Wockhardt in Jan 2024, was on that for ages (felt dreadful, v depressed, gained weight, lost fitness), increased to 50mcg, then 75mcg, then 100mcg, now on 125mcg per day and have had no overmedication symptoms at all on any of these doses. Always same brand of levo.

SlowDragon profile image
SlowDragonAdministrator in reply toRuthieRuth

Weigh around 82kgs, 43 years old (pre-menopause), probably undiagnosed for at least 10 years or so.

So guide lines suggest you likely need slightly higher dose ….around 132mcg daily ( 924mcg per week)

So approximately

125mcg 3 days and 137.5mcg 4 days (925mcg per week)

now on 125mcg per day and have had no overmedication symptoms at all on any of these doses

How long have you been on 125mcg

Supplementing vitamin D and K daily, erratic B12 and folate supplementation at the moment

When were these last tested

Test these and including ferritin at least annually…..ideally twice year

negative for Hashi/Ords antibodies.

20% of Hashimoto's patients never have raised antibodies

Ever had ultrasound scan of thyroid?

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Rhinitis and post nasal drip suggests possibly dairy intolerance

RuthieRuth profile image
RuthieRuth in reply toSlowDragon

Yes, had an ultrasound last year when I was complaining about feeling like I had an inflammed thryoid after they started me on 100mcg from nothing. Apparently unremarkable aside from a couple of benign nodules, despite being listed as "abnormal" on my NHS app test results page. I should add this to my bio. I have had unexplanable hyper phases in the past though, so I suspect something going on there.

Vitamins in 2023 (Blue Horizon tests) were:

Vitamin D 82 (Optimal range 75 - 200)

Vitamin B12 362 (range 145 - 569) pmol/L

Serum Folate 42.00 (range 8.83 - 60.8) nmol/L

Then I have:

Vitamin D October 2024 - 67 (optimal range 60 - 100 according to MMH) - surprised this was so low as I had been using Better You spray pretty religiously for a few months before that test. Switched to a higher strength supplement now for the winter at least.

Ferritin July 2024 48 (range 15 - 200) (NHS test)

SlowDragon profile image
SlowDragonAdministrator in reply toRuthieRuth

So ferritin is low

Aim to maintain at least over 70

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

SlowDragon profile image
SlowDragonAdministrator in reply toRuthieRuth

Vitamin D 82 (Optimal range 75 - 200)

Vitamin D October 2024 - 67 (optimal range 60 - 100 according to MMH) - surprised this was so low as I had been using Better You spray pretty religiously for a few months before that test.

How much vitamin D were you taking

How much have you increased to

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply toRuthieRuth

retest B12 and folate at next test

RuthieRuth profile image
RuthieRuth in reply toSlowDragon

Also been on 125mcg since 14 Oct - so 4 weeks or so. Plan to retest in 2 weeks and increase again then if necessary.

Just seems like the constant 30% gap between FT4 and FT3 in all my results seems to indicate poor conversion and probably a need for T3 supplementation. Or do we really think better vitamins will close that gap?

SlowDragon profile image
SlowDragonAdministrator in reply toRuthieRuth

Find tuning Levo and improving vitamin levels are always first steps

Retest after 8 weeks on increased dose

swing in thyroid levels in summer suggests Hashi swing

greygoose profile image
greygoose

TSH levels have nothing to do with what you eat. Your TSH dropped because your FT4 went up very high. Do you have Hashi's?

RuthieRuth profile image
RuthieRuth in reply togreygoose

I actually read a few studies that show that TSH is affected by VLCDs

greygoose profile image
greygoose in reply toRuthieRuth

Very Low Calorie Diets? Well, yes, of course that would affect TSH because you need calories to convert. If you don't convert well due to low calorie intake, you will become more hypo and your TSH will rise accordingly. It won't become suppressed. And eating excess calories won't affect it, which was what you appeared to be implying.

tattybogle profile image
tattybogle

hi RuthieRuth regarding the HIIT and it's short term effects on thyroid hormone levels .... you might find this research of interest : healthunlocked.com/thyroidu... after-high-intensity-interval-exercise-ft4-ft3-up-from-normal-12-hours-later-both-down-from-normal.-both-return-to-normal-by-72hrs

inthedoldrums profile image
inthedoldrums

I currently use RL for T3 and am not currently under the care of an endocrinologist although I did produce original paperwork from quite a few years ago confirming a Hypothyroidism diagnosis from a private endocrinologist. However, when you fill the form in prior to the appointment it only really asks for proof from your GP.

I wish you all the best on the road to improvement. ❤

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