New to hypo - timeline for Levo review? - Thyroid UK

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New to hypo - timeline for Levo review?

momo81 profile image
11 Replies

Hello,

I don't have my test results to hand unfortunately, but wanted to seek advice on when my results should be reviewed. Timeline roughly is:

- Diagnosed with hypo mid November last year and started on 50mcg of Levothyroxine

- Retested in mid Jan which included vitamin and iron levels, increased to 75mcg + bumper dose of Vitamin D for 7 weeks (apparently everything else looked ok but I'll ask for the detailed results)

My doctor's notes say to retest three months after starting the new dose (so mid April). However, I'm five weeks in and my fatigue is getting worse week on week. I guess my question is, is there any likelihood that I might be feeling better given more time to settle in, or if I'm feeling progressively worse at this stage is it better to review sooner than three months? If so I'll call the doctor again and ask more strongly for a medication review... I'm taking it first thing with water, not eating for an hour, taking any other supplements in the evening etc.

Thank you! I've found this community so helpful already.

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momo81 profile image
momo81

Not sure how to edit! Just to add - based on my weight I'd potentially need somewhere in the 125-150 mcg range.

SlowDragon profile image
SlowDragonAdministrator in reply tomomo81

You may not need that much, certainly initially

It can take 2-3 years to slowly get dose increased.

We have to increase slowly and wait for levels to settle after each increase

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you taking for 75mcg

Some people find they only tolerate one or two different brands of levothyroxine

Have you got 50mcg plus 25mcg tablets or single 75mcg tablets

Are you taking Levo first thing or bedtime

common to feel worse initially on increased dose while rest of metabolism tries to catch up

No point testing until at least 6-8 weeks after any dose change or brand change

Always test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Are you taking vitamin D at least 4 hours away from Levo

Vitamin D tablets should be taken with high fat meal to improve absorption

How low was vitamin D

What dose has GP prescribed

Retest levels at end of prescription

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average as maintenance dose

Once you Improve level by this prescribed loading dose from GP very likely you will need on going maintenance dose to keep it there.

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

momo81 profile image
momo81 in reply toSlowDragon

Thank you! The brand that I have currently is Mercury Pharma, before that it was Crescent (50mcg tablets). I'm taking it first thing (I saw somewhere that you're supposed to wait quite a while after dinner if taking it before bed and I'm going to sleep pretty early!).

Vit D dose is 40,000iu once a week for 7 weeks, then they're recommended a daily dose of 400iu. I'm taking it at least four hours after Levo and with a meal that includes some kind of fat. Still waiting to get access to my full test results so I'm not sure how low it was.

It sounds like it might be reasonable to ask for a medication review after 8 weeks rather than waiting for 12 - at my surgery, it's probably then another week to get the blood test booked in.

SlowDragon profile image
SlowDragonAdministrator in reply tomomo81

Vit D dose is 40,000iu once a week for 7 weeks, then they're recommended a daily dose of 400iu.

Retest vitamin D when you finish loading dose

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Likely to need higher maintenance dose than 400iu

2000iu daily more likely

Retest 2-3 months after each being on maintenance dose

momo81 profile image
momo81 in reply toSlowDragon

Thank you - I think I will do a round of private tests just to make sure I have full coverage.

SlowDragon profile image
SlowDragonAdministrator in reply tomomo81

Don’t test until been on constant unchanging dose and brand of levothyroxine at least 6-8 weeks

FallingInReverse profile image
FallingInReverse

Welcome to the forum!

What you’re experiencing is very common. Personally me and a few others here have found week 5 after a dose change the worst, then week 6 and beyond settle down.

You need to stay on a steady dose for 6-8 weeks in these early days. When you get close to your full replacement dose (roughly 1.6 mcg X kg body weight) some of us find waiting longer (like 10-12 weeks or more) is helpful.

This whole process in the beginning can take months to a year until you feel out of the woods. It can be a long slow process, although we are all different , but over time things stabilize. See the picture - it’s like that!

You need to get copies of your blood tests on a regular basis. Being “in range” or “normal” is completely useless!

Healing
momo81 profile image
momo81 in reply toFallingInReverse

Thank you! I'll definitely give it another couple of weeks before retesting, but it sounds like it might not make sense to wait for the 12-13 suggested at this stage. It's hard to know how to balance it without either doing it too soon when levels might still be settling, or waiting longer than needed when I feel so rubbish.

FallingInReverse profile image
FallingInReverse

7 day half life of Levo means by 6 weeks you’re good to test!

You are likely far from your full replacement dose anyway. For me at that stage I went up in 12.5 increments after 75. So next I did 87.5, then after that 100, etc.

So go for it, don’t delay an increase longer then you need to. You can slow down to 8-12 weeks in the next few go rounds if you want.

momo81 profile image
momo81 in reply toFallingInReverse

Thank you! I've booked a medication review for as soon as I can which is still a couple of weeks out but at least it'll be moving a bit faster.

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