Query re recent blood tests after starting t4/t... - Thyroid UK

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Query re recent blood tests after starting t4/t3 combo.

smilingjane profile image
β€’58 Replies

Hello all

I am posting a second time with same query. Seem to have lost the 1st one!

After being on T4 for over 30 years I became unwell so endo started me in T3 too.

After around 10 or so weeks on 75ml of T4 and 10 ml of T3 these are my latest results.

TSH 0.13 (0.3 -4.5)

T4 10.1 (10.0 - 4.5)

T3 6.2 (3.1 - 6.8)

Prior to starting on T3 in May, my T4 was 16.04, (same range) and TSH 0.06 (same range as above).

I would be interested in peoples views. I am still practically bed bound with chronic fatigue.

Many thanks πŸ€”

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Marz profile image
Marz

Click onto smilingjane to view your previous posts !

🌻

SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you currently taking

Can see you are injecting B12

When were vitamin D, folate, ferritin last tested?

Please add most recent vitamin results and ranges

Have you had coeliac blood test

Are you on strictly gluten free diet

smilingjane profile image
smilingjaneβ€’ in reply toSlowDragon

Hi SD

Vit ,ferritin, b12 etc, were requested on this recent blood test but havent come through. whether they will come through a little later or the labs decided bo to do them??

I am GF and SI B12 every other day. I take D3 ,(sublingual and the Bvits rec by you.

What do you suppose re the Levo? Did I read once that taking T3 brings the Levo down in tests?

Lalatoot profile image
Lalatoot

For me ft4 would be too low. Even my new endo said they like both ft4 and Ft3 to be half way through range on Combo.

However if you increase levo then Ft3 will go over range. You would need to decrease lio by 5mcg to then increase levo by 25mcg. And I don't know if that will do you any good.

smilingjane profile image
smilingjaneβ€’ in reply toLalatoot

Thanks Lalatoot

That's interesting. there was me thinking when I was trialled on the T3, that that's it someone handing me my life back! Maybe after all the trials and researching re the thyroid that my illness/chronic fatigue isnt down to my thyroid. Maybe there is something else going on.

And thinking about introducing the T3, is it making and difference? I've still got very little energy. Just 2 years ago, I had 2 jobs, I felt so different to now. It really is a bit of a puzzle πŸ€”

I hope you getting along okay?

Lalatoot profile image
Lalatootβ€’ in reply tosmilingjane

Yes I am getting there thank you. I am currently going through dose changes to get my ft4 up. I started out on 50mcg levo and 20mcg lio from the endo. I really didn't need my levo reduced and I only needed a smaller dose of lio si I didn't feel great ft4 was 10 and Ft3 6.4. I am now almost at 125mcg levo and 10mcg lio and vhope that this will sort out my last symptoms. I am getting my live back.

It is early days for you so hang in there. I have been on Combo for a year!

smilingjane profile image
smilingjaneβ€’ in reply toLalatoot

You are right, it is early days 😊

I am so pleased that you are returning to your normal self. All that hard work was worth it! xx

SeasideSusie profile image
SeasideSusieRemembering

smilingjane

You have put the incorrect range for FT4 so I have taken these from your other post:

May 20 Levo 100 daily

TSH 0..06 (0.3 - 4.5)

T4 16.4 (10.0 - 22.0)

Sept 20 after change from end May. T3 10 MLS and T4 75 mls. daily

TSH 0.13 (0.3 - 4.5)

T4 10.1 (10.0 - 22.0)

T3 6.2 (3.1 - 6.8)

I did change the T4 back to 100 for 3 weeks in June but the changed to 75 for 8 weeks prior to Sep b.test.

The biggest mistake was reducing your Levo when T3 was added. I know this is what endos tend to do but your FT3 was only 53.33% through range. It really is only necessary to reduce Lelvo when FT4 is at the top of the range (or over range) because taking T3 is going to lower FT4 anyway.

By reducing your Levo to 75ml your FT4 has plummeted to 0.83% through the range, caused by a combination of lowering Levo and the effect of adding T3. No wonder you are bed bound with chronic fatigue.

Some people are fine with a low FT4 when on T3/Levo combination, but many need FT4 a decent way through range.

With your current results I would say the balance of Levo/T3 is not right for you, you need more Levo to bring your FT4 up in range, possibly go back to 100ml, and slightly less FT3.

Why did you change back to 100ml Levo for 3 weeks then change back to 75ml?

smilingjane profile image
smilingjaneβ€’ in reply toSeasideSusie

I went back to 75 so that the blood result would reflect the dose Mr endo suggested. instead of going by my own instinct, and folks on here, doh!

Thanks so much for all your advice and correction 😘

Absolutely helpfull as usual.

So I will put the Levo up to 100 and then maybe get a test after 6 weeks or should I reduce the Lio by 5 to 5 say in 3 weeks? As well as upping the Levo to 100 straight away? then test in 6 weeks.

Thing is, if I'm a poor converter, do you think the extra 25 Levo would bring the T3 too high if I dont reduce the Lio? T3,

Many thanks again.

😊

SeasideSusie profile image
SeasideSusieRememberingβ€’ in reply tosmilingjane

smilingjane

We can only change one thing at a time.

Increasing Levo first will very likely take your FT3 over range.

I would reduce T3 first, initially I would reduce to 5ml, it has a shorter half life than Levo so you could wait 2 weeks then increase Levo. Give it 6-8 weeks and check your levels. Your FT4 should have increased. I can't guess what will happen to your FT3. Reducing T3 should reduce your FT3, but the extra Levo might increase your FT3 depending on how much natural conversion you have but I wouldn't expect it to be any higher than it currently is. The results of your next test should give you an idea of what the next step is.

It's fine tuning that's needed and it can take a lot of tweaking over quite a long time to find the perfect blend of both hormones where you feel optimally medicated.

smilingjane profile image
smilingjaneβ€’ in reply toSeasideSusie

Thank you, I hear you and will do what you are suggesting.

Time and patience to get better. I feel like I have spent my life always rushing. In a way it feels quite liberating to stop and listen to people with knowledge and experience before blundering my way along.

Thank you Susie and Lalatoot x

smilingjane profile image
smilingjaneβ€’ in reply toSeasideSusie

Seaside Susie

update

Just received an email from ending in Notts.

In response to my email to him with my latest blood results, he has asked me to up my Levo to 100 MLS daily.

Didnt mention the Lio, so I assume that is to stay at 10 MLS daily.

He has brought my next tele consult forward to the 13th Oct.

Sorry to bamboozle you but I'm still not quite clear πŸ˜‰ If I were to take the 100 Levo, and continue with 10 MLS Lio, how would that differ, (long term) to, reducing to 5ml Lio and then starting 100 MLS of Levo I two weeks.

Just that I am concerned if I reduce Lio to 5 MLS today and only take 75 MLS Levo for two weeks, that I will become even worse over the next two weeks.

Sorry I'm not grasping the concept very well 🀨

I really appreciate all you help

πŸ™

SeasideSusie profile image
SeasideSusieRememberingβ€’ in reply tosmilingjane

smilingjane

As I said, we can only change one thing at a time.

Your endo has decided to increase your Levo to bring your FT4 up, which it needs.

By increasing your Levo your FT4 level will rise and very likely your FT3 level will rise as well, which may take your FT3 over range. This is why I suggested reducing your Lio first, it would bring your FT3 down before adding the extra Levo and give room for the increase in FT3 that the extra Levo is likely to cause.

But do it your endo's way and see what happens. It's essential that you retest before your next consulation so that you can discuss the changes to your levels that increasing your Levo has made.

smilingjane profile image
smilingjaneβ€’ in reply toSeasideSusie

Thank you fir getting back to me 😊

If I do that and then find my T3 is too high with the next test in October, do you think I may find myself in the situation where my T3 is too high and my Endo suggests taking me off the T3, and take Levo only.

SeasideSusie profile image
SeasideSusieRememberingβ€’ in reply tosmilingjane

smilingjane

do you think I may find myself in the situation where my T3 is too high and my Endo suggests taking me off the T3, and take Levo only.

Who knows. But you can refuse to come off it completely, just say you're happy to trial a reduction due to over range FT3 but not to come off it altogether.

Finding the right balance when on combination T4/T3 hormone replacement takes a lot of tweaking over what can be a considerably long time.

smilingjane profile image
smilingjaneβ€’ in reply toSeasideSusie

Do you think, generally speaking that using a 3/4 combo is better than T4 only?

SeasideSusie profile image
SeasideSusieRememberingβ€’ in reply tosmilingjane

smilingjane

You can't really compare. It's horses for courses.

Some people only need T4 and do very, very well on it. You wont generally find them here, they're off enjoying life.

If you convert T4 (the inactive/storage hormone) into T3 (the active hormone that every cell in our body needs) efficiently then you will do well on T4 and wont need T3.

If your body doesn't convert T4 into T3 well enough then FT3 stays low and it's low T3 that causes symptoms. Those of us who don't convert well enough tend to need T3 in addition to T4.

So it's all down to the individual, there is no one size fits all.

smilingjane profile image
smilingjaneβ€’ in reply toSeasideSusie

Thank you, It is a complex area to understand. I will get there.

😊

waveylines profile image
waveylines

Excellant advice for you smilinhjane. 😊😊 Ive always thought its the tortoise that wins this race......so one change at a time & wait for a few weeks for the effect to fully kick in. Its difficutl to say whether theres something else going on. The effects of the correct dose/combination of thyroid treatment can be dramatic. Too high as well as too low can cause extreme fatigue. Has your endo checked your adrenals?

Im also on b12 injections and these days I have to half the vial and inject twice daily......Ive no idea why that frequency but it works. How often are your B12 jabs?

smilingjane profile image
smilingjaneβ€’ in reply towaveylines

Thanks for that wavylines

The only thing that I have noticed since the change of meds is that my CF is worse now than it was in May.

So following Susie and Lalas advice I will probs feel slightly worse over the next or two weeks then start to feel better.

Interesting re the B12. Maybe its best for me to wait until the Thyroids changed do you think, than alter my dosing for that.

Or I could change my dosing and like you self inject twice daily? Its tricky to change two things at the same time.

I SI every other day ATM. I have never noticed a diference since starting the B12.

I have wondered about doing a home test for adrenals. I remember reading somewhere I think πŸ€” that adrenals should be looked at before starting T3.

Or can I still test now do you think?

😊

waveylines profile image
waveylinesβ€’ in reply tosmilingjane

Yes you can test adrenals -the saliva test is good because it looks at a picture over 24hrs.

However its best to alter one thing at a time as otherwise you dont know whats doing what - can be confusing!! Been there done that!

How often do you have B12 jabs? You might find the B12d.org a useful sight to look at. They have an online diagnostic assessment you can do - free. Although some symptoms overlap with hypothyroidism others are distinctly different so I found their assessment tool useful especially as it alerted me to symptoms I didn't realise were related..

smilingjane profile image
smilingjaneβ€’ in reply towaveylines

Thanks wavylines. I SI every other day Atm. I will have a look at B12.org again . It is so hard to tell with so many overlapling symptoms what is down to what. πŸ€”

waveylines profile image
waveylinesβ€’ in reply tosmilingjane

Yes it is hard but some of b12 def symptoms are different, in particular the neuro ones such as pins and needles, tremors, numbness, double vision , others like incontinence are also not linked to hypothyroidism. I am unusual needing so much b12 to keep symptoms away so dont be swayed by that. Alternate days is a frequent level.

waveylines profile image
waveylines

I was also diagnosed with CFS before I finally got treatment for my thyroid. If it were me Id treat the thyroid first as its a known established fact with that level of TSH. You really need the full panel doing but the nhs wont do it to check how well you convert. So get your TSH under one then do a full panel if you still feel rubbish and you are on a tight budget.

My CFS nhs consultant has never rescinded the diagnosis stating the hypothyroidism is a consequence of CFS......I dont believe him. I was misdiagnosed.

smilingjane profile image
smilingjaneβ€’ in reply towaveylines

Hummm yes, misdiognisis are common.

I was diognosed with depression, ME and some other things 30 years ago after giving birth to my son. I was almost into a mixadeama coma before it was realised that I had post partum thyroiditis.

We have really got to be proactive in our own health πŸ€”

JuliaWM profile image
JuliaWM

You may also find you, and many of us on this list, are magnesium deficient. google "google scholar" the read subclinical magnesium defiency; ... produces a lot of nasty symptoms including fatigue. paper is by Dinicolantonio et al. many of us may notice we have some of the listed problems.

smilingjane profile image
smilingjaneβ€’ in reply toJuliaWM

Thanks for that Julia

I will have a read. I take a mag supplement but I've never properly looked into it. So hears my chance!

😊

NWA6 profile image
NWA6β€’ in reply toJuliaWM

I love how things crop up on this forum just as I’m thinking about them! I’ve just been googling magnesium all morning! Umming and ahhing if I have magnesium deficiency.

I have yet again woken with a numb left check. I have NOT been good with vitamin supplements lately and as I’m due a thyroid test that be just left them for now till I get my test. I’ll get them back in into my routine and if I still get this numb face then I’ll add a magnesium test too.

The last time my face was numb was 2018/2019. I thought maybe Bell’s palsy but it’s never been that severe. My forearms go numb and hurt too, as if they’re waking up from being numb. Not exactly pins and needles and not as bad as the previous 10yrs when I’d wake every morning unable to hold a cuppa till my hubby massaged them.

SeasideSusie profile image
SeasideSusieRememberingβ€’ in reply toNWA6

NWA6

I’ll get them back in into my routine and if I still get this numb face then I’ll add a magnesium test too.

Testing magnesium is unreliable. About 99% of magnesium is stored in bone, muscles and soft tissues, leaving about 1% in the blood. So testing what's in the blood isn't giving an accurate picture of our magnesium status.

A red cell magnesium test is the better indicator of magnesium status, not the standard serum magnesium test.

NWA6 profile image
NWA6β€’ in reply toSeasideSusie

Yes that’s what id read. I’m always curious though πŸ€ͺ

NWA6 profile image
NWA6

As others have said I’d increase Levo. If you’re a poor convertor I doubt it’ll push your T3 over range. I don’t understand why it’s good to have a higher FT4 but I just know it works for me. I’m on T3/4 combo. My t4 sits around 60% and my T3 around 90%

smilingjane profile image
smilingjaneβ€’ in reply toNWA6

I will stick with Lalatoot and Suzie and decrease the T3 first for two weeks then as you all say take the T4 back up.

πŸ˜‰

NWA6 profile image
NWA6β€’ in reply tosmilingjane

😬 ok but that’s a very small amount of daily T3 for a poor convertor 😬

trevg profile image
trevgβ€’ in reply toNWA6

Being on T3 only for years I'm glad to leave Levo well alone. No doubt transition away from it is tricky.

smilingjane profile image
smilingjaneβ€’ in reply totrevg

Trevg

I am interested to find out how Lio is different than than Levo.

I may start a new post but ooi how does it work better for you?

😊

trevg profile image
trevgβ€’ in reply tosmilingjane

T3 requires zero conversion and what your cells use.

This can be compromised by poor conversion -or resistance due to Reverse T3 building up.

Usually this item is ignored by 'specialists' _mostly in T4 .

DNA testing will show the genetic vulnerability, but this is not ever done, or RevT3 testing.

I wonder why?

I think it's at the root of so many problems along with Rev T3 ..

Look up Paul Robinson's work on the practical side of all this.

smilingjane profile image
smilingjaneβ€’ in reply totrevg

Thanks for that.

I have one if Paul's books. Find it hard going at the mo. However I will try and dig further in my understanding.

If you were to miss Lio doses for one day would you be pretty much floored?

πŸ€”

trevg profile image
trevgβ€’ in reply tosmilingjane

Never tried it, (No T4!!)keeping spares to hand. I never notice missing a dose - and have reduced to 30mcg from 40 often enough.

T3 is a good medicine and unfairly blocked, imo.

smilingjane profile image
smilingjaneβ€’ in reply totrevg

Do you have Hashimotis? I have a tiny slither of the gland left after 30 years of AI attack.

I have reached a stage after 2 years of been unwell of not able to do much at all, in bed most if the time. I am at a loss to understand it. Going from being super busy, two jobs.

Will speak to my endo, (hopefully) this week. I wonder whether most people would fare better with T3 only?

I will look at the book.

😊

trevg profile image
trevgβ€’ in reply tosmilingjane

It's said by some who study on the sidelines that most UAT ends up in the Hashi courtyard, apart from removal or clear injury.

Mine is, I've assumed, due to freaky high Arsenic levels which I found using Hair analysis. Finally, after years, my GP got me a useful non endo secondary specialist on this and the T3 worked well.

smilingjane profile image
smilingjaneβ€’ in reply totrevg

You have done well to sort the root cause. Crikey, Arsenic, where on earth did that come from ?

I dont know so much about hair analysis.. maybe I'l look into it πŸ€”Truth be known though I am getting a bit weary of searching.

I could do with my own personal health secretary to plough through all the possibilities!!

Wishing you the best and thanks for your input.

😊

helvella profile image
helvellaAdministratorβ€’ in reply tosmilingjane

Arsenic is a major problem in some parts of the world. Bangladesh being a prime location - and parts of the USA, Chile, Argentina (and elsewhere). There's a little map on this link - though it is probably over-simplified:

en.wikipedia.org/wiki/Arsen...

Rice can be a significant source of arsenic.

Arsenic is dissolved into water passing over or through rocks and soils. Then taken up and concentrated in some plants.

trevg profile image
trevgβ€’ in reply tohelvella

I suspect mine was from friends injuducious wood burning over many years in a rough bothy!

Slow build up is better tolerated- and wood preserves less deadly, I gather..πŸ‘

smilingjane profile image
smilingjaneβ€’ in reply totrevg

Are you carefull what you eat and ultra aware of environment etc?

smilingjane profile image
smilingjaneβ€’ in reply tohelvella

Ah ... thanks for the explanation.

Bad news for rice eating countries :(

smilingjane profile image
smilingjaneβ€’ in reply tosmilingjane

Never mind rice, it's the drinking water a major problem. oh dear 🀨

helvella profile image
helvellaAdministratorβ€’ in reply tosmilingjane

Yes - if you live there. But from a UK perspective, it is rice and other agricultural products that might affect us.

smilingjane profile image
smilingjaneβ€’ in reply tohelvella

I'm pleased it's not my staple diet.

It has put me off eating it though!

I wonder if white rice contains less n because its processed?

helvella profile image
helvellaAdministratorβ€’ in reply tosmilingjane

There is information here:

nutrition.org.uk/nutritioni...

smilingjane profile image
smilingjaneβ€’ in reply tohelvella

Thank you Helvella 😊

trevg profile image
trevgβ€’ in reply tohelvella

Heavy seafood diet is implicated, too -but I go easy on it having small childs portions and get sniffed at for it 😍

smilingjane profile image
smilingjaneβ€’ in reply totrevg

I dont eat fish or meat. So just the veg to think about. 😊

I do miss a tasty fish pie though!

trevg profile image
trevgβ€’ in reply tosmilingjane

See answer above to Helv.

Glad to help- it's difficult getting NHS responses.

This is Mineral Check - they send off to the US.

01622 850500 ~ Β£70 c.2 weeks.

Good for general health esp heavy metals and copper/ iron balance-but some serum tests are needed to back up some minerals interpretation.

As important as vitamins, imo.

smilingjane profile image
smilingjaneβ€’ in reply totrevg

Thank you 😊

SlowDragon profile image
SlowDragonAdministrator

When you did this test

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)

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

Is this how you did your tests?

smilingjane profile image
smilingjaneβ€’ in reply toSlowDragon

Hi SD

Yes I did 😊

GKeith profile image
GKeith

I took T4-only, 88 mcg, for 28 years straight, even though I always had cold hands & feet and very low temperatures. When I was young(er) I felt I was bulletproof, and when I say young I mean 45; I'm now 75. My T4 went bad when I was 73 and in Europe, where they don't add sugar and sweetners, like sucralose (worse than sugar) to your food, I believe this greatly contributed to the fact that I wasn't converting the T4, as I had in the past. Anyway, I was a professional boxer for 10 years and kept up workouts for all the years I have been alive, until the T4 problem escalated to the point I was forced to get an endo and got T3 prescribed. I started at 50 T-4 & 30 T-3 & felt good but kept going as my endo prescribed 75 mcg T4 and 20 T3, then 100 mcg T-4 and the same 20 mcg's of T-3. The time line was 2 years. In other words, I stayed on 50T-4 & 30 mcgs T-3 for nine months, then nine months on 75 mcg's of T-4 & 20 mcg's of T-3, then 100 T-4 & the same 20 mcg's of T3 for just 45 days when it went bad, totally, and I couldn't take any T-4, as it was not converting (from what little I could tell, as taking T3 skewers the results, obviously) I had had 4 teeth pulled and, at first, I blamed that but that has now been 3 months ago and my thyroid must take some (if not all) of the blame. I just cannot understand why the T4 will no longer convert? Or? I am at a loss but I have about given up and get headaches regularly, just after taking a T-3 pill (usually 10 mcg or 7.5 mcg with 50 mcg T-4 (a 100 mcg pill cut in half) I want to try NDT but if I can't convert T-4 I can't so I keep taking the 50 T-4 even though it may be the cause of the headaches. I am sick of taking them and if I stop taking the T4 & the headaches disappear, I will quit the T-4 altogether. The problem is I also have a face full of sweat when I take the T3 (3 doses, every 8 hours) only and, besides the sweats, I get (very) slight palipations, just more reminders which make me feel like I (must) have to take some T-4 just to see that I can and thereby keep open a possible try of NDT (the only other thyroid medication treatment I haven't tried. You know, if I didn't know better, I'd swear that there are many more than just you, smilingjane, that have run amouk on thyroid medication after app. 30 years straight? I still have a functioning thyroid so I am always feeling like I never should have took ANY thyroid pills but here I am; as usual, a day late and a dollar short! Peace be upon us all in these troubling times.

smilingjane profile image
smilingjane

GKeith

Thank you for sharing your story. I am sorry you are having such complications in trying to get your thyroid balance .

Out of interest, how could you tell that Your T4 wasnt converting to T3. Was it from blood tests?

I am also interested in what you say about sugar affecting Thyroid meds converting T4 to T3. I dont think Uve heard that before πŸ€”

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