What brand recommended for Levo UK? : I’ve been... - Thyroid UK

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What brand recommended for Levo UK?

21 Replies

I’ve been given Teva and am convinced it’s giving me side effects such as headaches and nausea. The taste made me recoil from the outset and 5 weeks in, still is. Sure my body is telling me something is not suiting. I know I need the hormone, but what is is mixed with? What is the most recommended brand in U.K. (realise everyone is different) but which comes out top? Doc didn’t specify on script was just issued by pharmacist.

Thanks for help

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21 Replies
SeasideSusie profile image
SeasideSusieRemembering

Buterfly1942

As you say, everyone is different, so whatever suits me or any other member may or may not suit you. Teva is the one brand that many people have a reaction to, but some have a reaction to another brand.

Go to : thyroiduk.org/tuk/treatment...

Scroll down to:

You can access the medications document for Hypothyroidism here:

Medications for Hypothyroidism - v1.6 updated 4/10/19

and click on the link. That will open a pdf article that lists all thyroid hormone replacement brands and their ingredients, you will be able to see what each brand contains.

If you change your brand be aware that Actavis comes as Almus from Boots and NorthStar from Lloyds Pharmacy as well as Actavis from other pharmacies. They are all exactly the same, Actavis is written on the long side of the Almus and NorthStar boxes and it's also on the foil back of all the blister packs. So if any of those brands suits you then if they are substituted for one of the others then that will also be OK for you.

in reply toSeasideSusie

Thank you. I just think it might be worth a go. I’m still poorly so can’t see what I have to lose. Know it’s early days but they genuinely make me gag and I think this is instinctive so trying to listen to my body. Especially after ignoring it for months and crashing in an seriously ill heap 5 weeks ago.

I’ll check the link 🙏

SlowDragon profile image
SlowDragonAdministrator in reply to

How much levothyroxine are you currently taking?

How long at this dose?

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Add most recent results if you have them

in reply toSlowDragon

Hi SlowDragon

I had increasing TSH levels going into abnormal for 9 months- three monthly blood tests- then in December last test read 5.8 TSH and FT4 at 11. Was very ill. Doctor started me on 25mcg. I continued to feel seriously ill- incapacitated. I was so scared. Went back 2 weeks later and saw another doc who said to increase to 50mcg as I was so symptomatic. That was two weeks ago. My doc repeated TSH reluctantly, along with vitamins ( all normal range) only a week or so ago and it had dropped to 2.9. He said no need to check FT4 or T4 blah blah. He has also noted to keep on current dose and review in one year- I mean, I am barely functioning and have been off work for 5 weeks with this

I have stopped the shivering- although some episodes but not continual now- and had the odd better day but only then to crash next day- which is disconcerting and beginning to worry me.

I’ve booked to see a private GP for second opinion and to request full thyroid panel as you suggested. I’m there tomorrow. I also spoke to pharmacist today who would not switch out the brand Teva they issued. She said she thinks it’s the thyroxine that’s causing the problem?? I honestly am at the end of my tether and not sure what to do/ think. I know I can’t stop the Levo- but it’s crossed my mind as I don’t know which way to turn. ☹️

Thank you for your interest and advice! 🙏

SlowDragon profile image
SlowDragonAdministrator in reply to

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

You will need bloods retested in week or so

See different GP and get blood test form

Ask for new prescription for levothyroxine so that you can try a different brand

Teva upsets thousands of people (Most GP’s won’t know this )

healthunlocked.com/search/p...

Get paper prescription so that you can go around different pharmacies to get different brand

What brand did you start on when on 25mcg? (Which was ridiculously small dose to start on)

Levothyroxine doesn’t top up our own thyroid output....it replaces it ....so until on decent levels of levothyroxine it’s normal to initially feel better on increased dose ....as you get nearer the 6-8 weeks if symptoms start to return this indicates you are needing next 25mcg dose increase

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

in reply toSlowDragon

Hello

Thank you! I was on Teva from outset- convinced it’s not suiting. I’m going to ask private GP to issue a new script tomorrow and see how that goes. And yes, the first GP who issued initial 25mcg would not budge on that dose and even though I went back, still would not increase even though I quoted the NHS guidelines etc for 50mcg. But the third visit, different doctor, immediately said increase to 50. But I’m making up with 2x 25mcg as said he’d keep on 25s just to double. So I’m wondering if I’m getting even more of the packing agents this way? The Pharmacist was insistent this was best make and dismissed my comment about the possible side effects from what it was bulked with. I noted mannitol- Googled it and it references sugar alcohol?? I am alcohol intolerant and have been for years- however, it could be health anxiety paranoia running away with me 🤣 either way, I’m trying a different make. Nothing to lose

Thank you so much for your advice- am feeling pretty desperate. Want to be well and back at work in. Job I love 🤞

SlowDragon profile image
SlowDragonAdministrator in reply to

Most people start to pick up once on 75mcg ....can be very hard getting GP to agree to levothyroxine increased up beyond 75mcg ....unless TSH is high

Often need to see a thyroid specialist endocrinologist if GP refuses

First ...you need to get blood tests and increase to 75mcg

Would suspect low vitamin levels

Have you had thyroid antibodies tested? Majority of hypothyroidism is due to autoimmune thyroid disease (hashimoto’s) diagnosed by high thyroid antibodies

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

Folate supplements can help lower homocysteine

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Low ferritin frequent in hypothyroidism

endocrineweb.com/profession...

in reply toSlowDragon

Thanks SlowDragon

I didn’t get the antibodies tested/ T3 etc but I’ll take your suggestion to GP tomorrow. See if I can request as it’s a private appointment.

And I suspect I need at least 75mcg. I’ve only been on 50 for two weeks so far but am at my own GP Friday so am going to ask?? I doubt they will until my pre booked blood tests in middle Feb. Should I be feeling the optimum of the 50s by this point do you think?

SlowDragon profile image
SlowDragonAdministrator in reply to

Make sure to get any thyroid blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Absolutely ESSENTIAL to test vitamins and thyroid antibodies

in reply toSlowDragon

Hi SlowDragon

Just wanted to thank you 🙏

Your advice was invaluable to help inform my private appt. Results in and thyroid antibodies and vitamins checked.

My TSH, T4 and T3 showing in normal range (have been on Levo for 4 weeks), but antibodies show Hashimoto’s Thyroiditis, vit D down and cholesterol up. Next step to pursue now with Endocrinologist as fully aware GP won’t look to increase meds on bloods at next test and am still highly symptomatic.

I really appreciate the guidance and info you shared. It’s all new to me and I would never have thought to investigate further- as you know, my NHS GP haven’t/ won’t test T3 or antibodies etc so I would still have been in the dark & climbing walls without your guidance and the amazing doctor I saw.

SlowDragon profile image
SlowDragonAdministrator in reply to

I did 24 years listening to clueless medics....only made progress after joining this forum

More on my profile

in reply toSlowDragon

That is one journey you have been on!

I can see from this how you have to take things into your own hands with this condition and what a difference a ‘supportive’ and ‘open’ medic can make, not one tied to a one size fits all/ text book approach.

I’ve got a long way to go but yours is an inspiring story!

Wetsuiter profile image
Wetsuiter

How are you tasting it? (just curious)

in reply toWetsuiter

Very bitter- dry and powdery and sickly sweet. Honestly, the first time- I thought god they have given me some cheap rubbish. And that thought has stayed with me. ☹️

Wetsuiter profile image
Wetsuiter in reply to

No i dont mean what s it taste of

i mean, how come you re tasting it?

in reply toWetsuiter

Hi Wersuiter

When I put it in my mouth- it leaves an after taste- am I misunderstanding your question😁?

SlowDragon profile image
SlowDragonAdministrator in reply to

Should be swallowing with half glass of water on empty stomach

Wetsuiter profile image
Wetsuiter in reply to

that is what i meant

sorry , probably sounded really odd that.

its just that i cant taste mine (even tried licking it the other day, i was so intrigued!). are you drinking enough water with it?

i suppose our tongues are as likely to be as individual as everything else

Edited: You re not taking it sublingually are you? i noticed the other day someone on here had been.

in reply toWetsuiter

Hi Wetsuiter

No, just in mouth and swallowing with water. Not sure why it tasted so bad but pharmacist at docs has suggested I try different make which I’ve started 3 days ago so I’ll be interested to see if it makes a difference. No taste from this one though 👍

Wetsuiter profile image
Wetsuiter in reply to

well that s v hopeful

in reply toWetsuiter

It is- I just want to feel better☹️ Like many on here, no doubt 😁

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