levothyroxine increase: hi there I’ve been... - Thyroid UK

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levothyroxine increase

Doris11 profile image
17 Replies

hi there I’ve been barking on about low B12and folate and luckily have an appointment with my GP on the 31st October 😌 I woke up this morning and was so tired so went back to sleep on the sofa for nearly two hrs 🙈🙈🙈🙈 (retired nurse) I am currently taking 100mcgs of levothyroxine and am wondering if I need a small increase as the symptoms are very like last time I needed an increase?

I’m a am overweight now 16stone! And I’m sure dosage is normally by weight? ( seen on this forum)

I think one of your lovely ladies had mentioned 12.5mcg to start with? Is there a best time to start this or take with my morning dose? Bear in mind my current TSH is 0.04 (0.27-4.2) Oct 23 NHS

My FT3 is 5.3 (3.8-6.8) and my FT4 is 19.1 (12-22) and two Drs have said I’m on too much levo and want to reduce it? How low can your TSH go? Any info welcome

Many thanks 🙏

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Doris11 profile image
Doris11
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Jaydee1507 profile image
Jaydee1507Administrator

What has happened about your horribly low B12 & folate levels?

Have you tried a different GP at the same practice to look into pernicious anaemia?

You had some good advice about B12 here: healthunlocked.com/thyroidu...

Vitamins are what you need to be focussing on at thw moment and then your TSH will rise.

Free T4 (fT4) 19.1 pmol/L (12 - 22) 71.0%

Free T3 (fT3) 5.3 pmol/L (3.1 - 6.8) 59.5%

Due to your already low TSH you will struggle to get a Levo increase so the time is right to raise your B12 & folate level.

Doris11 profile image
Doris11 in reply to Jaydee1507

Hi there I have received B12 ampoules from Germany and am ready to rumble but didn’t know whether to start before I see my GP just in case she wants another blood test? I have received my Methyl folate today 1000mcg so was going to take one in a minute? I’ve just looked at the back and the ingredients! Lots of fillers ☹️ cellulose, Di calcium phosphate! Anti caking agent! Gosh didn’t realise ☹️ any suggestions for decent folate please Jaydee1507 😌

Jaydee1507 profile image
Jaydee1507Administrator in reply to Doris11

B12 should be started for a week or two before folate so don't take anything yet!

See your GP before taking anything in case you can push them for further tests. If not then begin the B12 injections for a couple of weeks then folate.

It may well be the low B12 + folate which is making you so sleepy.

We usually recommend a B complex that also contains folate as opposed to a stand alone folate. This helps balance out all the B vitamins that work together.

If you want a higher than average folate in a B complex then this one might help.

uk.iherb.com/pr/seeking-hea...

For full B complexes with a lower amount of folate which may well be all you need:

amazon.co.uk/Liposomal-Soft...

amazon.co.uk/Yipmai-Liposom...

hempoutlet.co.uk/vitablosso...

Doris11 profile image
Doris11 in reply to Jaydee1507

Thank you I have been taking B12 complex which you all recommend anyway a little bit sporadically because of blood tests I’ve had lately because of the Biotin 😌 Lipsomal Bcomplex 😌 would I still need to take these if I’m injecting B12? Many thanks

Jaydee1507 profile image
Jaydee1507Administrator in reply to Doris11

OK then don't take anything more until you see the GP. If you have started even sporadically on a B complex that may mess results up but not necessarily.

I would definitely recommend taking the B complex after you have been injecting for a week or 2. That will really help.

Do you have a plan for loading doses? Perhaps ask on the PA group.

Doris11 profile image
Doris11 in reply to Jaydee1507

Yes I believe it’s 2x weekly until you start feeling better then bi monthly but can’t remember sorry 😞 bad brain fog 🙈

Doris11 profile image
Doris11 in reply to Jaydee1507

thank you sooooo much for all your help 🙏 it feels like like I will never feel better sometimes ❤️❤️❤️❤️

Doris11 profile image
Doris11 in reply to Jaydee1507

will ask on PA site ❤️

samaja profile image
samaja in reply to Doris11

You need to be having your B12 and folate together because if your folate is low your B12 will not be going anywhere even with injections. If you are starting with loading doses of every other day you will need 5 mcg of folate to go with it becuase B12 will deplete any folate you have very quickly. Methyl folate is also known to cause anxiety in some people so unless you need it specifically you might be better off with folic or folinic acid. You need to be off B12 for two weeks and at least a few days off folic acid for the PA testing (IF antibodies and parietal cells). If you get a positive text for IF antibodies then you have a diagnosis but the negative one doesn't exclude PA and you need then to test MMA and homocysteine. At the moment doctors often have directives form above not to test and diagnose PA and treatment would be only by tablets which wouldn't work for PA patients.

If you join the Pernicious Anaemia/B12 Deficiency Support group on FB you can learn all the things both about testing and self treatment you would need. It's all science based and very friendly too.

Doris11 profile image
Doris11 in reply to Jaydee1507

also thank you won’t touch levo 😌

Jaydee1507 profile image
Jaydee1507Administrator in reply to Doris11

I think leave Levo alone for the time being and come back to that 3-4 months after you have been on B12 injections.

I hope you feel better soon!

Doris11 profile image
Doris11 in reply to Jaydee1507

Your so kind ♥️

greygoose profile image
greygoose

We on here don't really care about the TSH - not if keeping it in-range means keeping yourself sick! But, with an FT4 that high, I wouldn't increase the levo personally. There is some proof that high FT4 levels promote some cancers. Plus it might make your conversion worse, rather than better. When the FT4 is too high for you, personally, it starts converting to more rT3 than T3.

Your FT3 - the active hormone - is only 59.46% through the range at the moment. You don't want it to go lower. In fact, you probably need it higher, because it's low T3 that causes symptoms like weight-gain. Not TSH or T4. So, perhaps the next step is to optimise your nutrients - vit D, vit B12, folate and ferritin - and see if that improves your conversion. If not, the only thing to do is get some T3 and add it to a reduced dose of levo. But, that can be difficult, for all sorts of reasons.

Doris11 profile image
Doris11

thank you very much for your advice I am see my Gp next week so will ask for B12 injections as I am deficient and may also ask for a pernicious anaemia test as Jaydee1507 has suggested 🙏

Sexyfish profile image
Sexyfish

You may actually have a conversion issue (ie T4 not converting adequately into T3) judging from your labs - a reverse T3 test (or a DIO2 gene test) is the only way to be sure. Increasing your levo could actually make how you feel worse if that’s the case. Start with optimising your B12 and other vitamin/mineral levels. Also get your iodine levels checked.

You may need T3 although there is a terrible push against it in the UK (largely due to cost and ignorance).

Doris11 profile image
Doris11 in reply to Sexyfish

Thank you 🙏

Lhassa22 profile image
Lhassa22

I have just been reading about this and seemingly the symptoms of over medicating and under medicating are very similar. Personally I think I am overmedicated at 0.1 and will discuss this with my GP at my next appointment.

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