GP confusing me again by changing my Levo dose to match TSH guidelines

[Watamu]

I am on Levothyroxine 75mcg per day supplied by NHS and T3 20mcg per day from Roseway Labs. Started taking T3 in January this year. Both taken when I wake in the mornings usually between 7 and 8 am

I had two tests done on Wed. so didn’t have to stop vits etc twice. I stopped everything two weeks before the test. Medichecks done at 7.45 am, my friend who is a phlebotomist took the blood. Then had NHS test done at 9.50 at the drs surgery. Followed all protocols, T4 24 hours before. Split the T3 into two doses, first one in the morning of the day before test and second one that evening. However, the evening dose of T3 ended up being 1 am on the morning of the test due to me knitting, losing track of time, and falling asleep in the chair downstairs. Would this account for the high T3 result on the Medichecks test?

Results as below -

Medichecks Blood Test

Inflammation

CRP HS 0.751 mg/L (Range <3)

Iron Status

Ferritin 178.00 ug/L (Range 30 – 332)

Vitamins

Folate – Serum 15.6 nmol/L (Range > 7)

Vitamin B12 – Active >150 pmol/L (Range >37.5)

Vitamin D 89.8 nmol/L (Range 50 – 250)

Thyroid Hormones

TSH <0.005 mlU/L (Range 0.27 – 4.2)

Free T3 8.1 pmol/L (Range 3.1 – 6.8)

Free Thyroxine 16.3 pmol/L (Range 12 – 22)

Autoimmunity

Thyroglobulin Antibodies 356.00 klU/L (Range 0 – 115)

Thyroid Peroxidase Antibodies >600 klU/L (Range 0 – 34)

NHS Test

TSH Your value is <0.03 mU/LNormal range 0.35 - 5.50 mU/L

Free T4 Your value is 16.8 pmol/LNormal range 10.5 - 22.7 pmol

I’m confused as to what to do now. The GP ( I’ll call this doctor A) passed a message on to me on Thursday via the reception to say that he has reduced my Levo to 50 mcg in line with guidelines, I’m not sure if he read my notes, or if he knows I’m on T3 now. He did this last year without discussing with me first, we came to an agreement and settled on 75/100 alternate days at that time. I still felt unwell and in September last year my liver function became a problem I had extensive tests and saw a consultant in November, bilirubin over 200 etc. it resolved itself and by Christmas all levels were back to normal. This I felt was a result of not having enough T3 in my system and decided to source T3 privately. Started 2.5 mcg once a day from Roseway Labs and gradually increased slowly up to 15mcg once a day. When the weather changed I gradually began to feel symptoms returning, not sleeping so well, sluggish, tired by mid afternoon, cold, more brain fog, so two weeks ago I increased my T3 to 20mcg per day.

My Medichecks test in May gave T4 at 23 (12-22) so I reduced this from 100/75 alternate days to 75 a day, on good advice from the forum. The GP wasn’t aware of this.

When I had the NHS test in June my T4 had reduced to 17.3 (10.5-21) but the GP I saw at that time (I’ll call this doctor B) still wanted to reduce my Levothyroxine further because of my low TSH. I then decided to tell the GP that I was self medicating on T3 and had already reduced my Levothyroxine to 75.. There was a silence, then he asked about the T3 – dose, name etc. and was ok about this. I said I was keeping a check on my temp, heart rate etc. He explained I would still need NHS tests because I was taking Levo. I felt happy about this. However, it was Dr A who has decided to lower my dose again, Dr B is away apparently.

I’m not sure whether to let Dr A reduce my Levo to 50mcg or to keep it at 75. I lowered my T3 to 17.5mcg this morning.

I made a resolve to see Dr B in future, but when he is away Dr A takes over. There are only three doctors in the surgery. I had issues with the other doctor when I requested a Ferritin test last year. Please can you give me some help with this.

[TiggerMe Ambassador]

Hmm... so first thing is to refuse the dose reduction and point out that your fT4 is only mid range at 51.6% and you do not agree to this change

Then your high fT3 result 7 hours after last dose does show that you have rather more than your body can utilize, did you feel any better changing from 15-20mcg T3?

It's actually looking like your fT4 dropped a bit too low and that this is the culprit for the return of symptoms and possibly would have been better to add it a couple of 100mcg doses to the regular 75mcg to bring it back up rather than more T3

I don't understand the liver/ T3 connections as this resolved before adding T3?

Looking back at this post healthunlocked.com/thyroidu...

It looks like you were on a dose of 5mcg T3 which resulted in 95% so plenty of T3 I'm not sure how you ended up on 20mcg? Do you feel better now than 5 months ago?

Also your folate has halved in this period along with a slight drop in Vit D which ties in with the season change so could do with increase to maintain 100-150nmolL

grassrootshealth.net/projec...

Looking back at your T4 only results I'm really not sure why you are adding this much T3 if any... it looks like a small increase in T4 would have been a better option to trial but maybe you had already tried this 🤷‍♀️

Free T4 (fT4) 17.7 pmol/L (10.5 - 21) 68.6%

Free T3 (fT3) 5.6 pmol/L (3.5 - 6.5) 70.0%

T4:T3 Ratio 3.161 

These showed good conversion

You say you never felt well on T4 but it may well have been you didn't ever quite have enough of it or were on a brand that didn't suit you?

[greygoose in reply to TiggerMe]

You cannot convert more T4 than you're actually taking. Good conversion will give you an FT3 slightly lower than the FT4, not slightly higher. So I agree with Sleepman , there is an element of Hashi's here. I think one would have to look at more than just one set of results on T4 only to get an idea of just how well the OP was converting.

[TiggerMe Ambassador in reply to greygoose]

I agree Hashi's is at play but seems consistant, previous results whilst on levo only have been very similar

17/10/22 75mcg T4

• TSH 1.86 mIU/L (0.35 - 5.50) 29.3% better around or under (Endo says between 0.5-2.5) so because I'm within the range GP's say its OK.

• Free T4 (fT4) 15 pmol/L (10.5 - 21.0) 42.9% at least 60-70% through range

• Free T3 (fT3) 5.0 pmol/L (3.5 - 6.5) 50.0% better at 46-67% through range

• T4:T3 Ratio 3.000 

Following test after increase...

12/5/23 8 weeks after increase to 100mcg

TSH 0.19mu/L 0.35 – 5.50 (-3.1%)

Free T4 20.4pmol/L 10.5 – 21.0 (70%)

Free T3 5.6pmol/L 3.5 – 6.5 (70%)

After these results T4 dose was lowered again!

[greygoose in reply to TiggerMe]

Hmmm... doesn't really look like the OP needed to add T3 when she did, either way.

Watamu , why did you start taking T3?

[TiggerMe Ambassador in reply to greygoose]

That's my thinking... if any was needed then maybe 2.5mcg max

Really needed longer on the right dose of T4 to let things settle

[greygoose in reply to TiggerMe]

Agreed on that point. But I wouldn't conclude from that that her conversion was good.

[TiggerMe Ambassador in reply to greygoose]

Crikey... you're hard to please 😅

Though when I look at this result that I grabbed from an earlier post I realize it couldn't possibly be right!

Free T4 20.4pmol/L 10.5 – 21.0 (70%)

Free T3 5.6pmol/L 3.5 – 6.5 (70%)

Corrected percentage..

Free T4 (fT4) 20.4 pmol/L (10.5 - 21) 94.3%

Free T3 (fT3) 5.6 pmol/L (3.5 - 6.5) 70.0%

T4:T3 Ratio 3.643 

Still good conversion after only 8 weeks but still time to settle... healthunlocked.com/thyroidu...

[greygoose in reply to TiggerMe]

I'm not hard to please, I just like to be precise. People on here have brain-fog for the most part, and are not thinking straight. We owe it to them to be strictly accurate, not vague and woolly - not that I'm saying you were vague and woolly but I think it only fair to say when I don't agree. I know from experience that people can come back later with some strange tails of what they've been told, and when you check it out they had totally misunderstood what they'd been told.

Yes, pity I didn't check the percentages but... But that tells a different tale. That suggests to me poor conversion. The gap between the FT4 and the FT3 percentage-wise is just too wide. I know you go by ratios but I don't think they tell the full story - not in real life. OK, I'm off now to do some more nit-picking somewhere else.

[TiggerMe Ambassador in reply to greygoose]

Go girl 🙂

[SlowDragon Administrator]

I would agree with TiggerMe

You look like you are taking too much T3 and not quite enough Levo

Refuse to reduce dose Levo

Explain to GP you are taking T3 and this always lowers TSH significantly

Ft4 is only 68% through range

Meanwhile

Reduce T3 by 5mcg

Initially you may feel worse …..but wait at least 8 weeks before retesting

You might need to increase levothyroxine a bit ….perhaps 100mcg once a week initially

Which brand of levothyroxine are you taking

Do you always get same brand

[Sleepman]

Sorry your struggling. It is so blooming complicated and slow!

I am so grateful for this forum.

I wonder if your results in autumn last year that TiggerMe looked at showing good conversion were affected by autoimmune system attacking thyroid and releasing T3.(swinging) I had this. Have you any T3 results other than this when on T4 only showing poor T3 results?

Being on only T4 is simpler if you do convert well.

I think it works a bit like this ... 50 mg T4 is about 18 mg of T3. So on 75 levo and 50 odd coming from T3 you would be possibly higher 125 mg ish.

Your bio suggests vit B12 issues. Some need jabs not oral supplements? Has this been looked at. Pernicious anemia forum on here is good. There are 2 types of b12 blood results.

[TiggerMe Ambassador in reply to Sleepman]

"I think it works a bit like this ... 50 mg T4 is about 18 mg of T3. So on 75 levo and 50 odd coming from T3 you would be possibly higher 125 mg ish."

❓❓❓ I have no idea what this means!

[Sleepman in reply to TiggerMe]

I picked up somewhere in a brain fog. Welcome comments

3 x T3 dose is about amount of T3 you get from T4 dose.

It should have been 16 not 18. Whoops.

So 3x16 T3 is about 50 and the amount of T3 you get from 50 mg T4.

So 3x20 is about 60 mg T4.

Plus 75 actual T4 is approx 135 mg T4 dose

[greygoose in reply to Sleepman]

Maths is not my strong point but this sounds like gibberish to me. And we always have to remember the when dealing with real, live hypos, these theoretical formulas always fall down because they don't take into consideration two very important variables: absorption in the gut and conversion rate of the individual. You need what you need, and you can only find that out by trial and error, not by a formula. helvella , what do you think about this?

[Sleepman in reply to greygoose]

Thankyou greygoose for the challenge, that is why this forum is so good.

I do not have a reference for it.

I have used it to guide my dosing. Not a big sample size ...

[helvella in reply to Sleepman]

I fundamentally disagree with the idea that you can usefully equate T4 and T3 - other than as a sort of hand-waving approximation.

helvella - How much more potent is T3?

A discussion about the relative potency of T4 and T3.

helvella.blogspot.com/p/hel...

It doesn't help that you are using "mg" when almost invariably thyroid hormone doses are in micrograms (mcg or ug). It doesn't make an arithmetical difference but can confuse.

And converting a T3 dose back into T4 seems a bizarre way of looking at things. (To my mind. We are all different.)

If you are going to suggest a 3:1 ratio, then take the 75 T4 dose, divide by 3 = 25. And add the 17.5 T3 dose = 42.5. In other words, go forward to the calculated T3 dose.

greygoose

[Sleepman in reply to helvella]

Thankyou helvella .

Your blog is clear and helpful.

Sorry all for any confusion.

[helvella in reply to Sleepman]

No need to apologise!

Discussion is vital and very often arrives after a misunderstanding, or a misworded post/reply, or simply having different opinions.

[TiggerMe Ambassador in reply to Sleepman]

Nope... you've totally lost me there... that makes no sense

Thanks to helvella and greygoose for stepping in

[SlowDragon Administrator]

I lowered my T3 to 17.5mcg this morning.

If you have tablets that enable initial 2.5mcg reduction that’s a good plan

Wait a few weeks before reducing further

Or retest 8 weeks after only reducing by 2.5mcg

Reading your profile you haven’t tried gluten free or dairy free diet?

[SilverAvocado]

Watamu,

One little comment is that: yes, taking your T3 later in the day, so that the gap between the dose and blood draw is smaller WILL change the results of the test.

I am struggling a bit with this issue myself at the moment. I realise that in past years I haven't been scrupulous about keeping the gap between my last dose and my blood draw identical.

I have tended to leave a gap at the larger end of that discussed on the forum, 10-11 hours between last T3 and blood draw. Currently my freeT3 is well inside the range, but I've been alerted to the fact if I made the gap smaller, I might not be inside the range. I had an incident at my GP a couple of years ago with a surprise thyroid test added to some others an hour or two after I'd taken the tablet. I had a freeT3 in the region of 20, and needed to do a lot of smoothing over.

Shortly after I began to realise this significance, I started seeing a new private Endo. He told me straight off that he doesn't believe freeT3 tests at all because they are just a function of the gap between the dose and the blood draw, and don't tell you anything objective. I am not sure whether to fully believe this, but I am sympathetic to it.

It's possible if you'd left the gap you intended to leave then this freeT3 test would be a chunk lower. You don't mention how many hours you shaved off your timings. The more it is the more the difference will be, of course.

[Watamu in reply to SilverAvocado]

Hi SilverAvocado, thank you for your input, i did feel that I may have messed up the test but all plans were in p lace and there was no way to change it. The hours between taking the T3 and test were 61/2 . I took T3 at 1.30 am and the test was at 7.50 a.m. In view of the short life of T3 I felt this must have some effect. I will still reduce the T3 by 2.5mcg and see how the next test goes. I'm finding the T3 dosing much easier to deal with than the T4. Thanks

[Judithdalston]

I am 6 years down the T4/T3 combo route, the levo being NHS the T3 private ( like you Roseway tho was originally a private endo), and I regularly get the ‘overmedicated on levo’ spiel, and phone call from poor GP receptionist saying the levo.prescription is being reduced. 3 months ago the GP did this without my consent as TSH 0.02 ( not new as tends to be 0.02-0.04 ish), and since Covid impossible to get to speak to him for at least 3 weeks, so had to go on lower dose from 100 to 75 levo, fortunately can’t touch the 3x5 mcg T3. TSH went up to 0.03, but I saw from private blood test ( filled separate phial at same draw by surgery nurse) that this went with FT4 dipping from 17.2 to 14.9 ( 52 to 29%), whereas FT3 slightly oddly rose from 40 to 46%. So never ‘overmedicated’ if anything under; even with levo.only my TSH was never in range yet FT3 3%… so the ‘conversion’ of T4 and T3 equivalents never made much sense to me.

Incidentally before T3 I had raised bilirubin…turned out to be a blocked bile duct, perhaps yours was too but became unblocked, mine need need procedure!

[serenfach]

I would just like to add that a GP is supposed to work with you, and not dictate. There was a recent thread here about the policy, so it may be worth just saying to your GP that this is supposed to be a partnership, not a dictatorship. I hope you get your sweet spot soon and feel better.