Need to ask my GP to up my Levo dose, but by wh... - Thyroid UK

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Need to ask my GP to up my Levo dose, but by what amount?

Izzywizzy124 profile image
13 Replies

Hello,

I've been on 100mcg Levothyroxine for a while but have started experiencing difficulty maintaining/losing weight, a very itchy rash on my hands (which I've had previously when my TSH was above 1) and extremely cold extremities/Reynaud's syndrome on feet and hands. I've also felt generally a bit weak and not had my usual level of stamina for exercise and assume this is all down to my TSH being higher than it has been when I've felt really well.

I've previously had iron issues but am taking a Ferrous Fumarate supplement and currently have Ferritin of 85ug so I'm assuming the symptoms are still more likely to be TSH related. I also take a 1000IU Vitamin D3+K2 daily.

I had a full thyroid panel done on Thriva yesterday and see that my TSH has increased to above 1 (see below). I've found I feel my best when it's below 1, or ideally below 0.5, so I want to approach my GP about increasing my Levo to either 125mcg or 150mcg but am unsure which? Is it better to make small adjustments (eg 25mcg) and see where that leaves me after around 8 weeks?

Here are my most recent bloods from Thriva:

JANUARY 2021 results:

FT3: 4.74pmol/L (normal 3.1-6.8)

FT4: 17.8pmol/L (normal 12-22 pmol/L)

T4: 88.3 nmol/L (normal 66-181nmol/L)

TSH: 1.1mIU/L (normal 0.27-4.2mIU/L)

TgAB: 51kU/L (normal 0-115kU/L)

TPOAb: 14.5kIU/L (normal 0-34kIU/L)

Ferritin: 85ug/L (normal 13-150)

Vitamin D: 77.6nmol/L (normal 30-175)

Folate: 12.9nmol/L (normal 8.83-60.8)

JANUARY 2020 results:

FT3: 4.84 (normal 3.1-6.8)

FT4: 19pmol/L (normal 12-22)

T4: 94.8nmol/L (normal 66-181nmol/L)

TSH: 0.363 (normal: 0.27-4.2)

TgAB: 52.1 (normal 0-115)

TPOAb: 9.02kIU/L (normal 0-34)

Ferritin: 130ug/L (normal 13-150)

Vitamin D: 65.5nmol/L (normal 30-175)

Folate: 11.2nmol/L (normal 8.83-60.8)

Really I'm just wondering whether to ask my GP for a 25 or 50mcg increase in my meds? I'm thinking maybe a 25mcg increase first?

The GP is mostly clueless about thyroid issues, so I just need to be able to put my point across and convince them and then they're usually just happy to go with my suggestion!

Grateful for any advice.

Thank you

Izzy

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fuchsia-pink profile image
fuchsia-pink

I'd ask for an extra 25 mcg - but be aware that some (quite a lot of?) 25 mcg packets are Teva brand ... it does no harm to have different brands of levo IF you get on with them fine, but Teva is the Marmite brand: lots of people don't get on with it; some others actively prefer it and some (like me) don't mind one way or another. It is lactose-free but has mannitol in it, which seems to be the thing that people dislike. So if you know you don't get on with Teva it may be easier to ask for 50 mcg and halve the tablets x

Izzywizzy124 profile image
Izzywizzy124 in reply to fuchsia-pink

Thank you fuchsia-pink, that's really helpful to know. I have heard things about Tevam but didn't know most 25mcg tabs were often Teva.

fuchsia-pink profile image
fuchsia-pink in reply to Izzywizzy124

There are other people that make 25 mcg but remember Northstar 25 mcgs are Teva (the other Northstar packs aren't) - it's just anecdotally here lots of people seem to end up with Teva when they need 25 mcg (and I've been given them myself - in Teva packaging which at least is more obvious!)

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you currently taking ?

Yes request 25mcg dose increase in levothyroxine

No B12 results?

Folate and vitamin D could be better

Suggest you increase vitamin D to 2000iu

Look at adding a good vitamin daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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...

Izzywizzy124 profile image
Izzywizzy124 in reply to SlowDragon

Thank you. This forum has provided so many more answers than my GP ever could.

My current brand of Levo is Mercury Pharma but is does vary at my pharmacy.

Will look for a good B-complex and up my vit D to 2000IU daily.

Unfortunately the lab couldn't process my B12 this time, so that's missing.

I guess our thyroxine needs can just change over time and that might be what's causing the TSH rise? Or do you think there's something my lab results suggest could be messing with the TSH? I take my Levo last thing at night as it's hard to fit in during the day around caffeine consumption (2 morning coffees & 2 afternoon cups of tea) and iron supplements (which need to be 4hrs apart from other medication).

thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply to Izzywizzy124

Taking levothyroxine at bedtime often gives best results

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Do you always get same brand of levothyroxine

Common to need to increase dose slowly over time

Izzywizzy124 profile image
Izzywizzy124 in reply to SlowDragon

Currently on Mercury Pharma but I have been given Teva before. It varies.I didn't take my thyroid meds or vitamin D for 24hours before my blood test. It was done in the morning and while I didn't have any food beforehand, I did have a cup of tea with milk. Not sure if that makes much difference.

SlowDragon profile image
SlowDragonAdministrator in reply to Izzywizzy124

Mercury Pharma makes 25mcg tablets

Avoid Teva

Izzywizzy124 profile image
Izzywizzy124 in reply to SlowDragon

Just collected my new 25mcg tablets and fortunately ended up with MercuryPharma

SlowDragon profile image
SlowDragonAdministrator in reply to Izzywizzy124

Always ask pharmacy what brand they have and always double check what brand is in the bag before leaving the counter

You can request GP to add note to all future prescriptions

“Mercury Pharma brand only please”

Izzywizzy124 profile image
Izzywizzy124

Just had the conversation with my GP about increasing my dose. They’ve somewhat reluctantly agreed to increase by 25mcg and reassess in 8 weeks. They clearly weren’t convinced by me saying I feel better with a TSH below 1. It’s all about normal ranges for them 🙄

SlowDragon profile image
SlowDragonAdministrator in reply to Izzywizzy124

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

SlowDragon profile image
SlowDragonAdministrator in reply to Izzywizzy124

You might want to consider initially only increasing by 12.5mcg

A) that might be enough

B) a test at only smaller increase is likely to keep GP happy

C) you can experiment with increasing up to 125mcg, after next test ....assuming it shows you need dose increase

Obviously getting TSH, Ft4 and Ft3 tested

Doing test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

just TSH, FT4 and FT3

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