Advice with levo brands please: Hi, My GP... - Thyroid UK

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Advice with levo brands please

Natureguy profile image
39 Replies

Hi,

My GP recently agreed to start me on 25mg of Levothyroxine, i did try and insist on 50mg as ive had lots of symptoms but she said see how i go. Anyway i have neen taking a brand called mercury pharma for this 1st month (not much to report, everything still the same apart from extreme dry mouth and headache after taking). My next month they have given me the brand Northstar/Teva. I questioned the pharmacist and asked if i could stick to the same brand but he was adamant that they are all the same and the only difference is the "inert ingredients". I seem to remember seeing that Teva was not peoples preferred choice. Can anyone advise? Many thanks

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Natureguy
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fuchsia-pink profile image
fuchsia-pink

Teva is lactose-free and has mannitol as a filler instead. You will see (in "polls") that it is something of a Marmite brand: lots of people dislike it (I think that's the mannitol); some actively prefer it; others (like me) don't mind one way or another. You won't know which camp you're in until you try it - but if it doesn't suit you, please "yellow card" it and ask the GP to put "not Teva" on your prescriptions

Natureguy profile image
Natureguy in reply to fuchsia-pink

Thanks i thought the same, maybe try it and see how i get on. I think because its such a low dose i might not see much difference at the moment anyway no matter what brand.

shaws profile image
shawsAdministrator

The may 'be all the same' to the pharmacist but they can have different affects on our body. So you are right to stick to the same make/brand so that if we have difficulties we can try a change to another make. It doesn't make sense not to have options as I doubt there are any 'brands' at present.

Natureguy profile image
Natureguy in reply to shaws

Thanks. I did say that to the pharmacist that people had reported that they better on some brands than others but he said the only ones that would have any different effects would be maybe ones with lactose in. He said they have no control over what brand gets sent from the supplier and there is every chance that the brand may be different from month to month.

shaws profile image
shawsAdministrator in reply to Natureguy

I was diagnosed in 2007 and that's the first time I've heard a chemist make that statement. Unless of course a 'supplier' cannot source the one a patient prefers or it has been withdrawn altogehther. It is amazing what a difference in a pill can make to our wellbeing.

Natureguy profile image
Natureguy in reply to shaws

I know, its not a very good attitude from the pharmacist and they seem to think they know it all but you people on here talk from experience which us why ive tried to take advice from here. I'll have to try the teva and see how i go until i can speak to my gp i think.

Bearo profile image
Bearo in reply to shaws

I use Kamsons pharmacy and I asked if they have other brands. The reply was that they have whatever is sent in. Well, for a year that’s been Teva and nothing else. Fortunately I have no side effects from Teva. But if I did want to try something else, I suppose I would have to change pharmacy.

shaws profile image
shawsAdministrator in reply to Bearo

You could also query with other pharmacies what replacement they can source if you want to swop in future.

Bearo profile image
Bearo in reply to shaws

I’m assuming Boots and Lloyd’s will always have the brands I keep seeing mentioned on the forum that they rebrand with their own names. So I might try one of those.

shaws profile image
shawsAdministrator in reply to Bearo

Even with 'brands' sometimes it might be necessary to replace something within it. I hope that doesn't happen.

Even after someone takes a thyroid hormone replacement for years, occasionally there could be something substituted. Thankfully we might not be aware of this.

shaws profile image
shawsAdministrator in reply to Natureguy

p.s. I take a betablocker at bedtime, and I have had difficulties if given another make so my chemist always ensures it is the same pack every time I need to re-order.

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

Are there any other pharmacies where you live? I'd be looking for someone else myself ... (my local Superdrug is great). It's not acceptable to be told you'll get what you are given if you don't respond well to what you get. Lots of people, particularly if sensitive, like to stick to one brand once they get one that suits ...

Natureguy profile image
Natureguy in reply to fuchsia-pink

Yes there are but im in a predicament now as ive only got 2 tablets left and my next box i have here is a different brand and possibly too low of a dose. It is now the weekend and my docs will be closed.

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

So try the Teva and see how you get on ... it isn't a disaster for everyone and if need be you can try and get a new prescription on Monday??

Natureguy profile image
Natureguy in reply to fuchsia-pink

👍

SlowDragon profile image
SlowDragonAdministrator

Are you saying you are STILL only on 25mcg levothyroxine?

See different GP

Previous results show TSH was 13 and high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

healthunlocked.com/thyroidu...

Standard starter dose of levothyroxine is 50mcg and dose should be increased as fast as tolerated

Bloods should be retested 6-8 weeks after each dose increase

Your male and in 40’s , likely to need several dose increases

Dose guidelines are 1.6mcg per kilo - so likely At least around 125mcg

SlowDragon profile image
SlowDragonAdministrator

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

Vitamin D was far too low previously at 41nmol

Are you currently taking vitamin D

How much ?

Aiming to improve to at least around 80nmol and around 100nmol maybe better

Retest twice year

Vitamin D NHS postal kit

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator

NHS bloods should be done 6-8 weeks after EACH dose change or brand change

Natureguy profile image
Natureguy in reply to SlowDragon

Hi slowdragon, sorry i will try and answer in one attempt lol.Started on 25mg just after new year, doc insisted the 25 instead of 50 as i tried to suggest. No vitamin as it seems they hadnt tested for it, been taking my own 1000/25 as had them in the cupboard.

Got a blood test next tuesday as this was the earliest they could get me in. My tablets run out on sunday so i requested another prescription which is what i now have (Teva not mercury). 25mg again as bloods haven't been done yet. I am already fed up of battling with the gp and system in general and am now wondering if i shouldve tried other things first such as gluten free, dairy free, allergy tests etc.. to try and lower my levels before taking the tablets.

SlowDragon profile image
SlowDragonAdministrator in reply to Natureguy

No you absolutely definitely need levothyroxine,

Your high TSH for years shows you have been hypothyroid a long time

Hope this test on Tuesday is early morning

Don’t eat or drink anything other than plenty water before test

Don’t take levothyroxine until AFTER blood test

Last dose levothyroxine should be 24 hours before test

Have you registered for online access for medical records and blood test results (saves battling receptionist each time to get results)

Natureguy profile image
Natureguy in reply to SlowDragon

Ok, i thought so which is why im giving it a go. The earliest appointment i could get was 11.24 as there were no others for weeks and was initially given 3.45pm. I dont have online access to records, was hoping to do it once covid was over as it is easier to setup in person at the doctors (i will look into it)

SlowDragon profile image
SlowDragonAdministrator in reply to Natureguy

Make sure you ALWAYS get printed copies of results and ranges after each test

Keep good records of results at each dose ..plus how you feel too

Vitamin D needs testing twice year when supplementing

GP will only test (at best) every 2 years

Test B12, folate and ferritin annually

SlowDragon profile image
SlowDragonAdministrator in reply to Natureguy

Vitamin D

1000iu is nowhere near high enough dose

Even NHS guidelines say 1600iu every day for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

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

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D these medics are taking

vitamind4all.org/letter.pdf

Natureguy profile image
Natureguy in reply to SlowDragon

Thank you for all the info. I know 1000 is too low but i thought better taking something instead of nothing until i get my vit d results from the doctors (they forgot to do it last time). I have been looking into alternative therapies and there are some people that have reversed hashimotos without taking levothyroxine, maybe they were just lucky. I bought a book by izabella wendz which looks quite good with lots of info.

SlowDragon profile image
SlowDragonAdministrator in reply to Natureguy

EXTREMELY rare to recover enough to get off levothyroxine. Likely your thyroid is already damaged

BUT maintaining optimal vitamin levels can significantly improve symptoms

Strictly gluten free diet often helps or is essential

Natureguy profile image
Natureguy in reply to SlowDragon

Thank you slow dragon 👍

Levo50 profile image
Levo50

Whenever ‘TEVA’ is mentioned I cringe - I personally had an awful experience on this brand (detail on my profile); therefore I would recommend you stick on the same brand - actually shocked at the pharmacist comments the inert ingredients do not suit everyone, I believe TEVA was actually removed from the market some years ago, I don’t know the full detail but it’s back now! I suspect the ingredient manitol may not have suited me but I don’t honestly know!

Natureguy profile image
Natureguy in reply to Levo50

Oh dear, i really dont want to take the teva having heard so many bad stories of it. It seems mercury is the hardest to get hold of on a regular basis. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Natureguy

Small independent pharmacies are often the most helpful

Once you work out which brand suits you best ...get that added to all future prescriptions....but you still ALWAYS need to check the bag before leaving the counter in pharmacy

Stourie profile image
Stourie in reply to Natureguy

Hi, try not to worry about taking teva. My son was diagnosed about 2 years ago and was given teva to start and he’s been on it since and is absolutely fine. Jo. Xx

Miffie profile image
Miffie in reply to Levo50

I recall there was a problem a few years ago with I think it was the 100mcg Teva tablets. They were withdrawn, after some reformulation by Teva all sizes have been on the market for a few years now and many find them perfect. Unfortunately not suited to you. I have been lucky enough to have had great advice from several pharmacists. Not least when I had a problem with a batch of levo.

helvella profile image
helvellaAdministratorThyroid UK in reply to Miffie

The "New Formulation" Teva was an entirely different formulation to the old product.

(The recall was in 2012.)

I was affected by the sub-potency of the old Teva product. And found the new formulation Teva affected my stomach. However, as you say, some find them the best product on the UK market!

Miffie profile image
Miffie in reply to helvella

Thanks helvella . I was seriously vague about the details. I hoped someone with accurate info would come along. 🙂

Sorry, just skipping going through all posts so sorry if I miss something: are you over 65/70 and have cardiac disease? Because, in younger patients without cardiac disease, the starting dose is 50 mcg...or was, as I have read that the official advice now is to start patients under 65 without cardiac disease on 1.6 mcg per body weight straight away...25 mcg is a tiny dose, more suitable for a person with cardiac disease, but even in such a person levo would eventually need to be raised...

Natureguy profile image
Natureguy in reply to

Hi, no ive just turned 40. Tsh -13.8.

TpoAB-330

vit d- 40

Rest was in range.

Im 6ft 2, 11.5 stone.

Thanks.

in reply to Natureguy

Well, your TSH is out of range even by UK standards (>10) and your TpoAB result shows you have Hashimoto´s, aka autoimmune hypothyroidism. So you need levothyroxine. 11.5 stone = 73 kg x 1.6 so 116.8 mcg...the closest would be either 112.5 or 125 mcg daily depending on your doctor. The general recommendation as far as I know is to start young, healthy patients on a full replacement dose, and not slowly titrate their dose up from 25/50 mcg as they once did...

SlowDragon profile image
SlowDragonAdministrator in reply to

Exactly....but as Natureguy has had TSH significantly above range more than 10 years (and medics never told him)

He is likely to need to start somewhat slowly....but just not this slow

shaws profile image
shawsAdministrator

25mcg is usually an incremental dose with 50mcg unless you have a heart condition. We usually start at 50mcg with a blood test every six weeks with 25mcg increases until we feel well and have no symptoms. Ensure B12, Vit D, iron, ferritin and folate are optimal - deficiencies can also cause symptoms.

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