Levo mess - Teva+Accord = a good mix or not?

[Levojunkie]

Hello, I'm a newbie.

Was on NORTHSTAR (Accord) Levothyroxine 50mcg for several years.

All was going really well, no problems.

Until some numpty decided, in the middle of lockdowns (and whilst I was shielding due to autoimmune issues), that I needed a routine thyroid blood test. Really thoughtful, eh?

That was last June (2021). Since then it's been a nightmare trying to get a blood test and my prescription ran out. Meaning I've been without Levo for long periods of time.

Sometimes I've been able to get someone to go to surgery and beg ad hoc prescriptions filled by the surgery pharmacy. They only had some other brand of Levo which had minimal effect. It's been incredibly difficult to get any sense out of the the surgery (10wk+ wait for phone appts etc). And equally difficult to get a community nurse out to take bloods. Community nurse came eventually - she was lovely and helpful but they've lost 50% of their team...due to burnout.

That enabled me to get NORTHSTAR (Accord) Levo again which was good, no probs. Blood test came back with elevated something or other. Had another blood test and now I need Levo 75mcg. (Hardly surprising given the prolonged mess and the incommunicado status of surgery staff most of the time and what it's done to my condition.)

But the good news is that today, 13mths on, I finally have packets of 1. NORTHSTAR (Accord) Levothyroxine 50mcg and 2. NORTHSTAR (Teva) 25mcg. YAY!

I've only ever taken the NORTHSTAR (Accord) (apart from the what I imagine is a cheap surgery knock off!).

So, having read here about the different manufacturers/ingredients and the difficulties that many people have when they change brands, I'm concerned about the cocktail of Accord and Teva.

How do other people get on with this mix?

What adverse sx should I look out for?

If there are any undesirable effects, should I ask for 2x NORTHSTAR (Accord) 50mcg packs and cut some of the tablets in half to comprise the daily 75mcg dose?

I'm suspect that there are other questions I should be asking but this is all I can think of for now (foggy head...) - except, why on earth is there so much trouble and confusion with this med?

Thank you for reading this!

Look forward to what I'm sure will be sensible answers, going by all I've read here so far (thumbs up emoji here Need to do something with the cookies settings!)

[helvella Administrator]

(apart from the what I imagine is a cheap surgery knock off!).

I really don't understand what you mean here?

Some people are fine on Teva. (I wasn't but others find it the best they have ever tried.)

As I see it, you will not get any issues from the simple fact of taking two makes. But if you get any side effects, it could be difficult deciding which is causing them.

And, if your dose is settled as 75, and your prescription written as 75, you can (currently) only get Teva. The other 75 that is licensed does not yet appear to be available.

The suspicion is that the issue might be caused by Teva using the ingredient mannitol. But we lack clear proof.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

[Levojunkie in reply to helvella]

Thank you for your response helvella!It sounds promising that some people do very well on Teva. I'll keep reading and learning.

I thought mannitol was a rather innocuous ingredient. Don't they put it in mints and chewing gum?

Well, they gave me the two different brands, 25mcg and 50mcg, with a script that says 75mcg. I don't know anything about dispensing protocols.

The cheap surgery knock off - the Levo that didn't work for me. I was told yesterday that surgery pharmacies try and buy the cheapest available. You get what you pay for...?

[helvella Administrator in reply to Levojunkie]

Mannitol is often innocuous. I don't think we understand why it seems to be an issue when used in levothyroxine tablets.

In the UK, we don't have anonymous tablets. All can be identified quite easily (see my medicines document). What is the cheapest to one surgery/pharmacy might not work out to be the cheapest for another.

[SlowDragon Administrator]

When changing dose you don’t really want to change brand

Only ever change one thing at a time

If you want to stay on Accord only….Accord doesn’t make 25mcg tablets

Request increased number of 50mcg tablets per month and cut in half to get 25mcg

Retest thyroid levels after 6-8 weeks

Test early morning and last dose levothyroxine 24 hours before test

Also test vitamin D, folate, ferritin and B12

[Levojunkie in reply to SlowDragon]

Ah! Many thanks for your advice, Slow Dragon. Will follow from tomorrow am using the 28 Accord tablets only.

With luck, next week I hope to be able to get them to send me an additional 14 tablets to make up for the 'rejected' Teva tablets.

I've another blood test in about 6 weeks.

I honestly doubt whether the surgery I'm at will test for anything else.

To what extent can one demand these additions/tweaks?

[crimple in reply to Levojunkie]

I couldn't tolerate TEVA because of the acacia powder filler in it. I don't have a problem with mannitol.

[Levojunkie in reply to crimple]

Thank you, crimple. That's another piece of the jigsaw to take into consideration. I don't know about acacia powder but I do have problems with chicory root derivatives, as do a fair number of people.

[SlowDragon Administrator in reply to Levojunkie]

What were thyroid results that prompted (finally) a dose increase to 75mcg levothyroxine

Don’t rush to get retested….8 weeks might be better

See what you can get tested via GP

You should get TSH, Ft4 and Ft3

But likely to only get TSH

To get highest TSH always book early blood test appointment, ideally just before 9am and last dose levothyroxine 24 hours before test

If not had vitamin D, folate, ferritin and B12 tested in last year, request they are included in next test

If never had thyroid antibodies tested for autoimmune thyroid disease….request included

[Levojunkie in reply to SlowDragon]

Thank you for your questions and advice. I don't know the results that prompted the dose increase (it's incredibly hard just trying to organise a test let alone actually getting through to anyone for any sort of conversation.)

Will see if I can get these details, at the same time as asking for TSH, Ft4, Ft3,

D, ferritin, folate, B12 and auto immune T.

I see some private consultations in my future...

I never knew about the 9am blood test 24hrs after last dose. How can they ever get any accurate readings if they don't routinely use this protocol??

Meanwhile, the very good news is that after only 2 days on the c. 75mcg there's a definite improvement. Head clearer, eyesight better, fewer aches and pains. Most unusual for me, last night I couldn't fall asleep - I was just calmly awake! No anxieties or racing pulse or anything. Even the extreme heat hasn't stopped me sleeping before.

One question if I may?

Is it possible to buy Levo off-script anywhere ?

I feel that I need to have a month or two's doses in reserve because I simply cannot rely on the surgery any more to be able to respond to needs in a prompt way. As I was cutting a couple of 50mcg tabs to make 25mcg (to add to a 50mcg to make 75mcg dose) I realised that I'm going to mess this up sooner or later and lose some doses!

[SlowDragon Administrator in reply to Levojunkie]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Keep good records yourself of how you feel, symptoms etc at each dose

No point doing private testing yet, waiting at least 6-8 weeks minimum after any changes

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Very common to need to supplement regularly to maintain GOOD vitamin levels