4 Weeks in T3 T4 combo: As you all know I am now... - Thyroid UK

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4 Weeks in T3 T4 combo

Nellups profile image
16 Replies

As you all know I am now after quite a few years of pushing due to bad conversion on T 3 along with my T4. The Endo prescribed 20 mg T3 along side my T4 of 125, of course I have not just added the T3 at this level straight away.

I started with 2.5 twice a day for a week with T4 at 125 everything fine

second week added another 2.5 , so morning 5 and evening 2.5 and dropped T4 Down by 12.5 per day. Have had a few breathing problems and anxiety that settled by the end of the week.

Tried adding another 2.5 in the evening but breathing got worse again, so am trying 8 morning and approx 2 in the evening and have dropped T4 now by 25 per day.

So in all on 10 T3 and 100 T4

Still not good and have now found my temperature is 35.6 first thing in morning and this evening 35.7 ? And have a headache, sleeping badly. (My temperature has always being higher)

Have been going to the gym 4 times a week but now stopped due to the worry of Coronavirus, going to try working out at home, breathing was getting worse with work outs

Does this mean either the T3 still needs to go up or is my T4 now too low ?

Supplements Vit D, Vit C , Zinc, B complexe

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Nellups
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16 Replies
Lalatoot profile image
Lalatoot

There's a lot of small changes going on there all at once. The body likes things to be stable. Best to adjust either the levo or the lio but not both at the same time in my opinion. That way you will maybe get a better indication of what is happening.

What dose are you aiming for initially?

You need to be on a fixed dose for 8 weeks then do bloods. After that you will get an idea if you need more levo or more lio and adjust from there.

SlowDragon profile image
SlowDragonAdministrator

Previous post showed low vitamin levels

TSH 0.43 mU/L (0.27 - 4.20)

Serum free T4. 27 pmol/L (12 - 22)

Serum free T3. 4.5 pmol/L (3.1 - 6.8)

Vit D 59 nmol/L

Serum B12. 926 ng/L (197 - 771)

Serum folate. 5 ug/l. (3.9 - 26.8)

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, best not mentioned to GP or phlebotomist)

Is this how you did this test?

Ft4 Probably too high

Vitamin D and folate definitely too low

Never got a reply to my question of what was your ferritin level

Low iron and ferritin often linked to breathlessness

Ideally you would get ALL FOUR VITAMINS OPTIMAL first before trying T3

What about thyroid antibodies?

Saw you had negative TPO antibodies...have you ever had TG antibodies tested?

You need to get full Thyroid antibodies testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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, best not mentioned to GP or phlebotomist)

Are you on strictly gluten free diet or tried it?

Suggest you stick on 5mcg in morning and 2.5mcg afternoon and wait 6 weeks and retest including vitamins

If/when also on T3, make sure to take last 1/2 or 1/3rd of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Nellups profile image
Nellups in reply toSlowDragon

Hi SlowDragon

I have not had a ferritin and iron done for approximately 2 years this was my results back then

Ferritin. 193 13.00-300.00 ug/l

Serum Iron. 10.6 10.00-30.00 umol/

Not being checked since?

TG antibodies tested? Not as far as I know

Always have blood tests done first thing in morning no tablets and no food and drink just as in France, which is what they tell you to do over there. But my last test was done at the Endos office in the afternoon had taken tablets in the morning and eaten, I said to the Endo that it should be first thing fasting but he answered it was fine makes no difference 🤦🏼‍♀️!

I’m not gluten free have done once made no difference

As for private tests can’t do as both companies don’t send the simple test kits to Northern Ireland, only for a blood draw and the two people they said it don’t now. So that’s out the window.

SlowDragon profile image
SlowDragonAdministrator in reply toNellups

Isn’t it extraordinary...rest of world acknowledges the importance of timing of testing.......yet almost all UK medics refuse to acknowledge this at all ....in fact if you request early testing it’s usually denied and if you say you haven’t taken levothyroxine before test the have a fit!

Nellups profile image
Nellups in reply toSlowDragon

Exactly I normally just go to have blood drawn in the open clinic it’s early morning so works out great. My Endo insists every time I go to do a blood draw, no matter how many times I say it’s useless waste of NHS time and money! So I tend to ignore his results

SlowDragon profile image
SlowDragonAdministrator in reply toNellups

I haven’t had NHS test for years...they won’t do all necessary tests...and as you say, it’s useless to test afternoon, after taking medication

SlowDragon profile image
SlowDragonAdministrator

Remember to stop taking any supplements that contain biotin (eg vitamin B complex) a week before any blood tests as biotin can falsely affect test results

pennyannie profile image
pennyannie

Hello Nellups

Just to add that a fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 Levothyroxine + 10 T3 Liothyronine.

I read that T3 is about 4 times more powerful then T4 so if without a thyroid and on monotherapy with T4 only medication you have automatically been ' down regulated ' by 20% of your overall wellbeing, and overtime, this is likely to compound your quality of life.

The thyroid is the driver, the conductor of your whole body synchronisation, your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

Some people can get by on T4 alone : some people at some point in time simply stop converting the T4 into T3 and some people simply need both these vital hormones dosed and monitored independently to bring these essential thyroid hormones into balance and to a level of well being acceptable to the patient.

T4 is a prohormone and needs to be converted by your body into the active hormone T3.

No thyroid hormone supplements work effectively if your vitamins and minerals are not optimal in the ranges. Just being somewhere in the range, is not acceptable for our wellbeing, so would suggest you get current levels of ferritin, folate, B12 and vitamin D measured - I remember being very breathless and this was because of my low ferritin.

Most people tend to feel well when both T3 and T4 are in the upper quadrants of the ranges.

The TSH is a diagnostic tool and of little importance once on medication, and without a thyroid in situ, of no importance.

I think a blood test with the relevant vitamins and minerals would be sensible after about 6 weeks on this current dose - and post the results and the ranges back on here for considered opinion.

I'm with Graves Disease post RAI thyroid ablation in 2005 and became very unwell some 8 years later. Thanks, in the main part to this amazing website I'm now ' off the sofa ' and getting my life back - I'm self medicating as I was refused a trial of T3 on the NHS, and am much improved on Natural Desiccated Thyroid.

I am envious of your ' apparent ' energy !

Nellups profile image
Nellups in reply topennyannie

I can assure you I don’t really have that much energy🤣 I force myself as cant keep weight down if not, it also takes me along time to recover.

Anyway now I have to work out at home as with this virus, maybe safer at home

pennyannie profile image
pennyannie in reply toNellups

Hey there,

I read on here that some people take extra T3 when they plan ' busy ' days - exercise classes etc :

I'm not in that category, and in all honesty never ' saw ' the gym as somewhere I'd like to go : and I'm just pleased that I have my independence back.

I think until you find an optimal level of T3/T4 you should not overstretch yourself, and if weight is your focus you do need a healthy, balanced diet and read ' calorie counting ' isn't recommended for good thyroid functionality.

Nellups profile image
Nellups in reply topennyannie

Hi

Don’t worry I have always eaten a healthy diet spent 28 years in France eating healthy never processed or ready made there, you wouldn’t want to with all their lovely fresh fruit and veg and meat and I don’t calorie count. It’s not just weight I go to gym for it’s also because I have problem knee only half a meniscus joint and was recommended by surgeon in France to go to gym for weights etc to build up my muscles to proche to the joint.

Liyaelize profile image
Liyaelize

Try a lower dosage and see what happens. Higher doses suppress your own bodily function and make you feel worse. That's what happened to my daughter.

in reply toLiyaelize

Yep, me too. When I started T3 trial it suppressed my TSH which reduced the last trickle of T4 my thyroid was producing so my T4 crashed with no change in my levo dose - I felt terrible. I got great advice on this site about going slow and steady and only changing one thing at a time.SeasideSusie, Slowdragon and Greygoose and others have posted some really helpful advice so might be worth searching earlier posts. There is actually very little clinical evidence on the right dose of T4 and T3 and most doctors will happily admit they don’t like prescribing t3 and don’t know much about dosing. People can take many months to find what suits them.

Good luck

Nellups profile image
Nellups in reply to

That’s why I started slowly on T3 and have built up, the Endo wanted me to take 20 straight away 🥺

in reply toNellups

Urgh, I think 20 right away would give you the jitters and probably feel very high

Liyaelize profile image
Liyaelize

I tolerate only 2.5 mcg of T3 more than that I get bad pain over kidneys

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