Different GPs - Different levothyroxines

[helvella]

About a year ago I was transferred to a new GP at my local surgery - which I was asked about and agreed to. (She had seen me for shingles.)

She is outstanding at listening. (At least, at the time!).

I recently felt that my levothyroxine dose wasn't quite right. I usually take a 100 microgram + half a 25 microgram. And increase to a full 25 if I feel the need. Usually only for a day or two.

But I was taking 100 + 25 day after day after day! The 25 was the same actual packet of Wockhardt. But the 100 was a new pack.

So I requested a change. Referred to surgery's pharmacist (by email and phone) who was actually quite good. He was happy to do a prescription for Aristo levothyroxine 100. (Would have been OK doing Aristo Vencamil - the branded version - but that was not yet in their computer system! He said EMIS are pretty slow at updating medicines.)

He was pretty dismissive of the cost difference seeing it as absolutely trivial.

Local independent pharmacy got some and I started taking it.

Am feeling good. Am back to mostly taking 100 + half a 25 as usual. Indeed, a couple of days, I dropped to 100 only.

What is really odd is that it doesn't just feel like the dose has been re-established successfully. But I overall feel better. As if the thyroid hormone is actually reaching everywhere.

Many years ago, I managed to try both Aliud and L-Thyroxin Henning and felt similarly on them. Eventually switched to UK makes due to supply issues. Settled on Accord in preference to Mercury Pharma.

To the best of my knowledge, I have no issues with lactose. While I don't consume much milk, I do eat yogurt, cheese, puddings, other foods, which contain at least some lactose. And other medicines including paracetamol which often contains lactose.

Yet all three of my preferred makes are a) German; b) lactose-free.

I have now seen my GP and she has agreed to keep me on Aristo and has changed my prescription to 100 + 25 - rather than 100 + alternate day 25. Leaving me free to request repeats as needed and without splitting packs.

I felt listened to and able to ask for what I wanted. No-one pushed me to get a blood test before acting - wasn't even mentioned!

Have now done a Yellow Card on my 100s. The surgery pharmacist asked if I would send the MHRA summary email on to him - which I have done. Was actually pleased he was interested enough!

And am completely convinced there is something about lactose and levothyroxine when made into tablets.

Even if the effects were entirely psychological, the tiny cost differences mean that changes would likely be hugely cost effective. It would be great to be able to request any make that is available.

NOTE: This is not in any way suggesting that others would have the same experiences - of either the Accord or the Aristo. We are all different.

[RedApple Administrator]

Can I just check what you've said here... you put a Yellow card in for the 100mcg Accord? What do you feel was wrong with them? Asking because I yellow Carded Accord 50s just last month.

[helvella Administrator in reply to RedApple]

Interesting.

I felt that they were effectively sub-potent.

By, I'd guess, around 10%. So a 100 tablet having the effect I'd have expected from 90 (if such a thing existed).

(I am trying hard not to pre-judge what is wrong. When we had the major issue about ten years ago, with old formulation Teva, the right amount of levothyroxine was in each tablet. But it was not available to get absorbed. And that seemed to be due to one of the excipients.)

[RedApple Administrator in reply to helvella]

I also felt the 50s were sub potent, but by more than 10%

Do pharmacists get to find out the results of yellow cards? I was asked to send tablets to Accord for testing and really want to know the results, but don't think they divulge this to us mere patients do they?

[helvella Administrator in reply to RedApple]

I don't think pharmacists would usually get Yellow Card reports - nor ever get to know anything about them. Only if the investigation targets pharmacy-specific issues (very poor storage jumps to mind) or, of course, if any sort of recall occurs they'd know of that - despite not knowing about the Yellow Card.

I agree it would be good to know. But I can also see why no-one involved would be keen on revealing anything.

[helvella Administrator in reply to RedApple]

Been mulling it over.

Levothyroxine is required to be within the range of 90 to 105% potent (in the UK).

It could be that a low-end potency 90% is small enough that we might not notice? At least, not enough to be sure of it. So, when I suggest 10% down, could I actually mean a second 10% - down to 80%?

Pure speculation! Ultra-simplistic numbers to make a point. The reality is what it is - regardless what I think or write.

[arTistapple in reply to helvella]

When we think about how tiny changes can affect us hypothyroids, I find this entirely plausible. Especially if we have been on one particular med for a while. Isn’t our very sensitivity one of the things doctors have so much trouble handling? I made a ‘tiny’ improvement to my T4/T3 conversion by supplementation which I feel was noticeable but treated with less respect than I should have!

[helvella Administrator in reply to arTistapple]

That we still only have one 12.5 microgram levothyroxine (which is grossly over-priced and is the widely unfavoured Teva formulation) suggests a lack of appreciation that small dose changes can have profound impacts.

I can't help wishing that we got a "free" pack of 12.5 alongside any other dosage! So we readily have the possibility of making a tiny increase in dosage.

[arTistapple in reply to helvella]

How novel! It’s such a good idea it’s got no chance. I have often thought about T3 in that way too. I did try to find out what was the absolute smallest dose of that by contacting a compounding pharmacy (I thought maybe I could get a really tiny amount made up) but no reply. However (silly me) I have just realised that perhaps you could have answered that! I was taking 2.5 mcg which in my opinion I was benefitting from. But I overshot even on that. I was cutting up 20 mcg into 8 pieces. I could not get it any smaller with any accuracy. Even the 2.5 was dodgy. No doubt this contributes to many failed T3 trials.

[tattybogle in reply to helvella]

I can't help wishing that we got a "free" pack of 12.5 alongside any other dosage! So we readily have the possibility of making a tiny increase in dosage.

i have accidentally achieved this happy state of prescribing , my boxes always say:

"Levo.. 50mcg one to be taken twice each day "

"Levo.. 25mcg Half to be taken each day"

But my repeat prescription form always says:

"Levo.. 50mcg ~Twice A Day ~ 112 tablets"

"Levo.. 25mcg ~half a day ~ 56 tablets"

conveniently leaving me with 28 spare 25mcg tablets a month to fiddle with as i please ..

Anyone can play ... it's a game called " Mr Benn Confuses a GP"

First you get the GP in 2005 to give you 2x 50 instead of a 100 by being a nuisance and they humour you just to get you to go away .

Then the new chemist in 2019 comes out from the magic door at the back of the shop and tries to turn it back to 1x 100mcg because "that will be easier for you to manage (my dear)"

Then you moan to the new GP (who evidently can't count) that you preferred 2 x 50 and you're pissed of they changed it without asking you .

and "as if by magic , the shopkeeper appeared" .. accidentally giving Mr Benn an extra 12.5mcg to play with .

[SarahJane1471 in reply to tattybogle]

😂😂

[Buzcat in reply to helvella]

and some people are still not absorbing the one with mannitol in it.

[helvella Administrator in reply to Buzcat]

I did actually get some 12.5 Teva shortly after it came out.

And it made my stomach very uncomfortable. So I stopped taking it very quickly and refused Teva levothyroxine ever since.

[Purplesash in reply to RedApple]

I find this interesting regarding the Accord brand, I added 50mcg levo back into my 30mcg dose of lio mid January and I have yet to feel any difference/improvement and just checked what brand I have and it is Accord! I have just had a blood test, so it will be interesting to see if the numbers have changed much.

If there is not much change in the numbers I will also do a yellow card.

[RedApple Administrator in reply to Purplesash]

Gymbuni, please let us know one way or the other

[Purplesash in reply to RedApple]

Yes, I will do.

[Imaaan]

Always love hearing about the health experiences of others. So thnxs for that. As for you mentioning that the effects may be psychological, I doubt it. Your body likes what your body likes and sometimes there is no rhyme or reason why. You're blessed that this particular med is..easy on the pockets and easier on your body

[helvella Administrator in reply to Imaaan]

I just wanted to point out that the "savings" are so slight, it should just be a free choice.

[Tina_Maria]

Thats very interesting. I had a similar experience a while back but with galpharm levothyroxine 100 mcg. I started taking them and within two weeks I was feeling hypothyroid and not well. I also filled out a Yellow Card report to the MHRA and contacted the manufacturers as well. Galpharm pharmacovigilance stated that they have checked their batch number, which I supplied, but could confirm that there was no issue with potency.

I suspect, that they use an excipient, which alters the absorption rate of levothyroxine. I went back to Accord levothyroxine 100 mcg, which I had before and was getting on with okay, and since then, I have no further issues. I always request the Accord brand now, even switched to a pharmacy that I know keeps them in stock - just to make sure!

With regards to a connection between lactose and levothyroxine, I found an older publication, where a woman had an undiagnosed lactose intolerance and as a result was not responding to treatment with levothyroxine. Might be worth checking if you are developing a sensitivity to lactose or are even intolerant, as this might perhaps cause a malabsorption of levothyroxine? Just a thought. Keeping my fingers crossed for you.

[helvella Administrator in reply to Tina_Maria]

That's interesting!

Especially as I've never come across Galpharm levothyroxine!

Do you still have the packet or the leaflet? Could you let us know the PL number, please?

[Tina_Maria in reply to helvella]

Hi, sorry, my bad! It was Glenmark levothyroxine 100 mcg that gave me problems. As mentioned, reported it to the MHRA and to Glenmark pharmacovigilance, they sent a list of ingredients, which was nothing out of the ordinary. I noticed though that when I took the tablets in my mouth, they were very brittle and dissolved easily, which was never the case with any other brands, so something not quite right there. Hope this helps.

[helvella Administrator in reply to Tina_Maria]

Easy to make a mistake!

The Glenmark product has been withdrawn from the UK now. No information as to why.

But a shame as it was one of the few lactose-free and mannitol-free options - the only one in doses other than 100!

[Tina_Maria in reply to helvella]

Hmmm, interesting that the tablets have now been withdrawn from the UK..... one can only wonder!

[buddy99]

If I did take nothing else away from this post, just the fact that there was a physician who LISTENED, makes me so incredibly happy. Thank for sharing this experience, Helvella. I need that kind of news every now and then. It gives me hope. ❤️

[helvella Administrator in reply to buddy99]

It might have helped that she also "admitted" that I had the worst case of shingles she had ever seen (when she saw me early last year).

Sort-of gets her on my side to start with!

[buddy99 in reply to helvella]

Physicians admitting anything leaves me starry eyed.

[TiggerMe Ambassador in reply to helvella]

Proper MAN shingles eh 🤣🤗

[helvella Administrator in reply to TiggerMe]

And I've got the photos to prove it!

[TiggerMe Ambassador in reply to helvella]

OH! please NOOOO 😨

I'm vegetarian 🤣😬

[Charlie-Farley]

I'm on marmite the Marmite of levo - Teva and despite getting a few headaches as I worked my way up the doses I have felt ok on these for nearly two years. I'm relatively well and the only gripe is that I no longer have 'My overdrive', however I think this is more to do with NO T3 being directly produced by the thyroid and having to rely solely on T4 to T3 conversion. That extra T3 produced in the thyroid is there for a reason.

[helvella Administrator in reply to Charlie-Farley]

I keep wondering whether those who do well on Teva would also do well on other lactose-free makes?

[Charlie-Farley in reply to helvella]

quite possibly