TSH dropping, but FT4 stuck

[TheSnufkin]

I started levothyroxine on 10th August on 25mcg, then went up to 50mcg in September, then 75mcg Nov and I'm now alternating 75/100mcg every day. My TSH has dropped considerably, however my FT4 has got stuck at the very bottom end of normal and doesn't seem to be rising despite me increasing the dose of levo.

Stats are here:

Thyroid test results FT4 Range 7.9 to 14.0

10 February 2024 8.6 pmol/L

13 November 2023 8.6 pmol/L

21 September 2023 8.7 pmol/L

25 July 2023 7.8 pmol/L

3 June 2023 7.4 pmol/L

TSH Results Range 0.570 to 3.600

10 February 2024 1.382 mU/L

13 November 2023 3.169 mU/L

21 September 2023 1.841 mU/L

25 July 2023 3.730 mU/L

3 June 2023 2.128 mU/L

I also paid for a FT3 test via Monitor My Health and this shows that my FT3 is at the very lowest end of normal too.

FT3

Your result is 3.3 (range 3.1 - 6.8 pmol/L)

I don't feel very much better than I did before starting levothyroxine. My GP was even slightly curious about the fact that my FT4 hasn't risen (the GP practice was loathe to diagnose me with hypothyroid in the first place) and she actually suggested put me onto the higher alternating dose without me asking.

Having taken advice on here previously I know you need to know other levels, I have been supplementing with:

Iron/vit C to tackle my low ferritin (was 18ug/L in September23, now (March 24) 44ug/L range11 to 307)

VitB12 injections (was 213ng/L in August - range above 203) - no new test on the basis that the injections will cause a very high reading

Folate tablets (6.3ug/L in August - range above 4) currently taking 800mcg because of the Vitamin B12 loading

Vitamin D3/K2 (last test was 71.5 nmol/l - range above 50)

I'm also supplementing with a magnesium complex and probiotics and eating high potassium foods.

So I'm here to ask does anyone know what's going on and why my FT4 levels aren't rising with a rising dose of levo? Is this likely to be why I'm still feeling like I've been run over by a steamroller and have no energy or concentration. What should I do next?

If you've got this far, thanks for reading.

[beh1]

I’m sure others will offer better advice, but just a couple of points: are you taking the levo with plenty of water and leaving preferably an hour if possible before eating/drinking? You could try taking it last thing at night as this might improve absorption. Are you taking levo well away from supplements etc?

I think you could push the dose to 100 mcg and still be in range for tsh. Worth a shot, if doc agrees.

[TheSnufkin in reply to beh1]

Hi Beh, thanks for answering. I take my levo in the middle of the night when I get up to let the dogs out (so between 3-5am) and take my iron mid morning and the rest of the supplements at about 8pm (along with all my other prescribed medication). I'm doing my best to make sure that they are as separated from each other as they can be because of interactions. I maybe don't drink enough water, so I'll start drinking a whole glass when I take the levo. Thanks for the tip.

[GlowCoach Administrator]

Just checking that you are ensuring that your iron and magnesium is taken 4 hours away from Levo?

If your FT3 is low in range then thats more likely why you are feeling awful rather than FT4 not rising.

Healing is not in a straight line basically. I know its easy to imagine that if you take more Levo (T4) then one would expect a higher level of FT4 but in reality it doesn't always work that way, especially in the early days of treatment.

Your TSH is still above 1 so you have room for another increase now and next blood test you will need a full panel to assess your conversion rate properly. Likely you will need to get that done privately.

Healing graph

[TheSnufkin in reply to GlowCoach]

Thanks for this, it's helpful to know that recovery isn't linear.

I take my levo in the middle of the night (between 3-5am) when the dogs wake me up because they need a wee! So it's well away from the iron which I take mid morning and the magnesium etc which I take in the evening after tea.

Does the low T3 figure mean that I need to be looking into trying to get prescribed lio (or sourcing it elsewhere)?

I just want to stop feeling so awful. I've been unwell for nearly 2 years now since I had covid which is what seems to have kicked all this off and I'm so tired (in all ways) of not being able to do the things that I want to do.

[GlowCoach Administrator in reply to TheSnufkin]

Before thinking about adding T3 its wise to give Levo alone a good run and get your TSH down to below 1. Its a much simpler treatment, more easily and cheaply available. In your own mind you do really need to know if Levo alone will work for you.

If you were to be adding T3 its best to have all vitamins at optimal levels otherwise intolerance of T3 can result.

When did you have the FT3 test via MMH? Its a bit out of context as a result on its own not knowing TSH & FT4 at the time.

How long are you leaving between last dose of Levo & Blood test?

So push for another 25mcgs levo increase if you can and maintain the supplementing regime retesting after 3-4 months of supplements.

Hypo is just a condition that takes a lot of time and patients to get the dose right and for your body to heal.

[TheSnufkin in reply to GlowCoach]

Sorry, I should have put the TSH and T4 in with the T3.

See below

19/03/2024

Your TSH result is 0.49

TSH levels normal (normal range 0.27 - 4.2 mU/L)

Your FT4 result is 17.6

FT4 levels normal (normal range 12 - 22 pmol/L)

Your FT3 result is 3.3

FT3 levels normal (normal range 3.1 - 6.8 pmol/L)

I'm leaving 24 hours between last dose of levo and the NHS tests (although I completely forgot to not take levo with this test) and test was done at 8:30am prior to eating and drinking anything but water

[GlowCoach Administrator in reply to TheSnufkin]

Thank you. So I've worked out the % through range:

Free T4 (fT4) 17.6 pmol/L (12 - 22) 56.0%

Free T3 (fT3) 3.3 pmol/L (3.1 - 6.8) 5.4%

Was this test taken as recommended? 9am or earlier, fasting, last Levo 24 hrs beforre test & no biotin containing supplements for 4-7 days before?

You still need a Levo dose raise as FT4 is only at 56% of range. It needs to be much higher.

[TheSnufkin in reply to GlowCoach]

Hi Jaydee, yes I took the bloods at 8:30am and had fasted but I'd taken my levo during the night and forgot I'd done so when I did the sample. I hadn't taken biotin, but I did eat eggs and bananas the day before, not sure if this might have affected it?

[GlowCoach Administrator in reply to TheSnufkin]

The eggs and bananas won't affect your result but taking Levo in the night before an 8.30am test will have falsely raised your FT4.

So you still really could do with a Levo dose increase.

[TheSnufkin in reply to GlowCoach]

Now I feel stupid 😭what a waste of £36

[GlowCoach Administrator in reply to TheSnufkin]

Not a complete waste as we can see your TSH and its a good guide generally. It can be difficult to stop doing something thats usually done on autopilot.

In future, the day before your test you should shift your morning dose to the time of the test otherwise you will end up with a lot more than 24 hours spacing from your Levo dose.

Have you had GP tests at a similar time of day? I see your TSH seems a bit higher on NHS tests.

All of this is a learning exercise.

[TheSnufkin in reply to GlowCoach]

Definitely a learning exercise!

All my NHS tests have been done between 8 and 9am and I've made sure not to eat or drink anything except water prior to bloods being taken.

[SlowDragon Administrator]

You’re not on high enough dose levothyroxine

How much do you weigh in kilo approximately

Ferritin still far too low

How frequently are you getting B12 injections

Rather than just folate, add a separate daily vitamin B complex

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...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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

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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

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

Vitamin D still needs improvement

[TheSnufkin in reply to SlowDragon]

Thanks so much for replying Slow Dragon, as usual your reply is so helpful.

Answers to your questions:

I'm 90kg

I'm using the iron protocol to increase my ferritin with 322mg ferrous fumarate and 1g vit C a day, but I can't take iron on an empty stomach otherwise I vomit, so I'm probably not getting as much absorbed as I could be. I'm still happy that the levels are going up

B12 I've been getting injections weekly as I'm having to pay because the GP says my levels are "fine". My course of 5 has just finished, so I'm now looking at buying ampoules from Germany for self-injection (I'm on the Wake Up B12 facebook group which has a lot of advice about this). I felt no improvement at all from the 5 injections, if anything I feel worse than I did. I do wonder if this is "reversing out" and I'm going to have to go for every other day if I start to self inject. I have been tested for intrinsic factor, but that came back negative and that I can absorb it through my stomach, but honestly despite taking 2000mcg sublingual B12 a day (prior to the injections) I didn't see much difference.

B-complex: I'll look at getting the Igennus B complex as I'm about to order some more supplements.

Folate: re folate I have been taking a Sundown brand supplement that is specifically labelled as "folate 666mcg" as I'd read that folic acid supplements weren't as good. But this may not be methyl folate, so I'll have to have another look.

I'm looking at the Vitamin D protocol stuff, but I'm uncertain that their recommendation to take 10,000 to 50,000 IU a day is actually medically safe as it's so much higher than RDA and everyone seems really gung-ho about it. I'm already taking 2000IU a day.

Thanks again for your help

[SlowDragon Administrator in reply to TheSnufkin]

You don’t need folate AND vitamin B complex

But in week before testing, when you stop vitamin B complex, you can take folate instead

Try increasing vitamin D to 3000iu daily

Test twice a year

[SlowDragon Administrator in reply to TheSnufkin]

I'm 90kg

So guidelines suggest eventual daily dose at that weight is approximately 144mcg Levo per day

Obviously some people need a little less, and some need a bit more than guidelines

Currently you appear to be in need of dose increase in levothyroxine

[TheSnufkin in reply to SlowDragon]

That's a useful thing to know, now I just need to pursuade my GP which is going to be hard going! Thanks again for your help.

[Sparklingsunshine in reply to TheSnufkin]

The test for intrinsic factor is notoriously inaccurate. the antibodies only show in 50% of cases. I don't know why the NHS still persists in using it. You might as well flip a coin. So you could still have PA, even with a negative antibody test. HU has an excellent B12 and PA forum and the members there are very up on self injecting and all things related.