Levo trial progress - thyroid problem? - Thyroid UK

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Levo trial progress - thyroid problem?

Snooperkitty21 profile image
11 Replies

On a previous post of mine I received helpful advice to give levothyroxine a try. I’ve been on it since March 2022 with no improvement in my brain fog and memory issues. My derealization and depersonalization is still bad as well. I’m feeling tired most days and wasn’t really before. How long do I keep trying before I stop taking it and try to figure out another reason for my symptoms?

I’m currently on 50mcg now and I know it’s a starter dose but I’m wondering how much I should go up to before deciding if I should stop to continue.

I won’t be getting new thyroid labs done because my doctor says we are going for how I feel (and my numbers are bad - no one thinks my issue is thyroid-related but I have some of the symptoms!).

These are my labs from Oct 2021 and not being sure if my issue was related to any thyroid problem.

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Snooperkitty21
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11 Replies
SarahJane1471 profile image
SarahJane1471

Well firstly you are very lucky that you have a doctor is going to see how you feel rather than look at blood tests. This is the best way when taking Levo. If you only started taking Levo in March then it really is way to soon to decide if it is working or not. It’s a very long process to get to optimal dose. I think an increase in 25mcg should be tried next. I too had peaks and troughs when moving up through the doses. I’m now on 125mcgs and started last July on 50mcgs.Ask for an increase and see how you feel.

Snooperkitty21 profile image
Snooperkitty21 in reply to SarahJane1471

Yes my doctor gave me levo after I luckily read info on this site! He doesn’t think my thyroid is off but I’ve been so I’ll that I think he’ll give me anything at this point.I have an appt next week and will ask to go up to 75 mcg. Sounds like I need to get it up to that and likely even more to see how I feel.

Snooperkitty21 profile image
Snooperkitty21 in reply to SarahJane1471

I got the increase! He seemed a bit hesitant but I told him I read that most people need at least 100 mcg to feel well. I have a lab slip for a thyroid panel to be done.

SarahJane1471 profile image
SarahJane1471 in reply to Snooperkitty21

Well you need to give Levo a good long trial before giving up. For me I knew that it was working because everytime I went up 25mcgs I would feel amazing for a few weeks then the symptoms would slowly return until me next increase. Some days I still feel sh**te ( normally after a burst of energy like decorating the day before) . However I do know that j feel 10X better than I did this time last year🤷‍♀️. We are all different. I’m on 125 mcgs now. This may be enough. I just don’t know yet. I’m not a patient person so it’s been I long year!!!!

pennyannie profile image
pennyannie

Hello Snooperkitty :

We generally feel at our best when our T4 is in the top quadrant of its range as this should in theory convert to a decent level of T3 - and it is T3 - the active hormone that runs all bodily functions.

Whilst it is true you dose to relieve symptoms, you do need to be taking a decent dose of T4 to feel any benefit and your ' starter dose of 50 mcg ' should have been increased after 6-8 weeks, and this process needs to be repeated until your T4 is up towards the top of its range.

Your T4 is only just around 30% through the range and so this may take 2 or more dose increase in T4 .

No thyroid hormone replacement works well until your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

So this might be an area to look to as well, and if these blood tests haven't been run, suggest these are actioned and forum members can also advise as to optimal levels necessary for optimal thyroid hormone conversion.

Snooperkitty21 profile image
Snooperkitty21 in reply to pennyannie

Thank you for your reply! I may ask for a rerun of my thyroid panel in a few months even though he wants to go by my symptoms. I’ve had it run 3 times over the past few years and my ft4 is always either 11 or 12 (9-19) so never high in range. I read on here that with a lower ft4 and normal tsh it can be central hypo so I’ve just had a brain MRI to see. I have all of those vitamins tested and they’re good now (but they weren’t always!).

Ferritin 67 (was 11 but am on iron)

Folate >45 nmol (optimal)

Vit D 165 pmol (75-250)

B12 700 pmol or so and I’m on injections at my request as well

Snooperkitty21 profile image
Snooperkitty21 in reply to pennyannie

I ended up getting the increase to 75 mcg and he ordered me a full thyroid panel but wants me to wait until I’ve been on 75 for 6 weeks to get the labs drawn. Is this an appropriate timeline?

pennyannie profile image
pennyannie in reply to Snooperkitty21

Yes - it's usually suggested after any dose increase in Levothyroxine you get retested after around 6-8 weeks to reassess your symptoms and new blood test levels.

SlowDragon profile image
SlowDragonAdministrator

You need vitamin D and folate levels tested too

Are you only taking B12 or a daily vitamin B complex as well

Snooperkitty21 profile image
Snooperkitty21 in reply to SlowDragon

Yes my vitamin D is optimal now at 165 pmol (75-250) but was 65 before supplementsI’m on B12 injections and not taking a B complex. I bought some and tried it (even bought the recommended brand from a b12 group) and got bad headaches. I don’t get headaches normally.

SlowDragon profile image
SlowDragonAdministrator in reply to Snooperkitty21

You may need to add B complex slowly

Igennus vitamin B complex is small tablets. Full dose is 2 tablets per day. Just one tablet likely enough anyway

Tablets cut into 1/4’s ….Starting on a 1/4 ….see how that goes

B vitamins best taken in morning after breakfast

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