Hello, I wanted to ask - what UK compounding pharmacy do you personally use and had the most success with? So far, I tried compounded meds from 2 pharmacies and I had to stop both of them and go back to my regular thyroxine meds as I felt undermedicated on compounded meds.
I have a list of pharmacies in UK, however I wanted to ask - what is your preferred one, with reliable compounded meds please?
Julia_T, 'I tried compounded meds from 2 pharmacies and I had to stop both of them and go back to my regular thyroxine meds as I felt undermedicated on compounded meds.'
Can you expand on this please. What are your 'regular thyroxine meds', and why are you trying compounded?
We don't have many compounding pharmacies in the UK. If the list you have is from Thyroid UK, those will be the only recommended ones. thyroiduk.org/if-you-are-hy...
If you feel under medicated on any thyroxine, it's best to get your TSH/FT4/FT3 levels tested, ideally before swapping to different medications. It may be that you actually need your thyroxine dose to be increased.
It might help to add some information!
Such as what you want to be compounded? Why you feel the need to go down the compounding route?
Personally, I'd be very wary of any levothyroxine product supplied as compounded. We see numerous questions over the standard products and I have a nasty suspicion that these will not reduce by obtaining them from a compounder. At least we can discuss makes and batches with other members if we feel something isn't quite right. There is little such co-operative support if it was made to order.
(This isn't to say there aren't issues with existing products. There are.)
Welcome to the group.
I'm just wondering what issues you're having with taking Levothyroxine that's making you feel the need for a compounding pharmacy?
There re lactose free tablets available, also liquid levo, although that has been in short supply lately.
Intolerance of Levo can often be due to low vitamin levels - ferritin, folate, B12 & D3. being hypo gives us low stomach acid so we don't absorb our vitamins well despite good diet. Have you had these levels checked lately? Levels need to be OPTIMAL (top quarter of range) not just 'in range'.
Thank you for your replies! Yes, I know about ideal ranges for thyroid and my ferritin, folate, B12, D and other things have been checked, all good, ideal level.
The reason why I wanted to switch to a compounded T4 is because it's cleaner without additives.
However, having tried actually 3 different compounded pharmacies and also Tirosint-Sol, I feel undermedicated on their version of T4.
One of the pharmacies I tried sent my TSH to 25 and my T3 and T4 bottom level, when regularly it's around 1.5 and my T4 and T3 are fine. I switched back to my regular thyroxine and it all settled.
When I go back to my regular thyroxine, same dose, I feel fine.
Is the issue compounding and stability of T4? Or a specific lab?
Whoever makes it .. surely they will still have to put additives / excipients / fillers in it... T4 on it's own is microscopic. they need to make the tablet out of 'something'
I can only imagine that compounded thyroid hormones are very expensive and as you feel well on Levo then I'm a bit confused as to why you are looking elsewhere.
helvella will be able to answer about stability and labs.
T4 is affected by oxygen, humidity and light. As well as the possibility of the excipients affecting both the T4 itself and absorption. A classic example is calcium phosphate. Shown to reduce availability of T4 even in factory T4 products - yet quite widely used.
I really don't think that compounding pharmacies are particularly aware of the specific issue of levothyroxine.
It is always going to be more difficult for a compounding pharmacy to do things like pack in an inert gas, ensure 100% airtight and moisture-proof seals.
If your regular T4 is better, why not stick with it?
There are several choices - including lactose-free. Have a look at my medicines document:
helvella - Thyroid Hormone Medicines
helvella.blogspot.com/p/hel...
Tirosint-Sol is, as you know, not approved in the UK. But it is the one with the least excipients. If you are very keen on going for the fewest ingredients, and afford it, and have access, I'd go with that. (Not sure I am reading right - you did OK on it, didn't you?)
Thank you so much! No, had to stop Tirosint-Sol, felt undermedicated on it. Again, went back to my regular thyroxine and felt fine on it. What about compounded T3, is it more stable, or same problem? Would you recommend a more established brand of T3 vs compounded? I've tried T3 from one compounded pharmacy as well, but didn't do well on it and it was only 5 mcg, feel awful, even through at a time I needed to raise my T3 a bit. I am thinking of trying another compounded T3, but obviously it costs and perhaps I better off ordering something more stable?
Julia_T, Your questions and answers are confusing to us. Assuming that you are actually a UK resident, can you enlighten us as to why you're not getting your thyroxine and T3 through the NHS? Are you self medicating, or under a private endo perhaps? We're finding your situation a little difficult to understand 😊
Yes, UK resident, not self medicating and working to a private doc. My question is more to do with stability of compounded meds vs branded meds.
All approved medicines must have an expiry date which ensure that the medicine maintains acceptable potency from manufacture to that date.
For levothyroxine, that range is 90 to 105% of claimed potency.
Bear in mind, that must be achievable in the real world including, for example, some non-optimal storage - such as during transport and in patients' homes.
With careful storage, such as can be achieved with air conditioned vans and pharmacies, you'd expect the actual potency at expiry to be well within the required range. (Sorry, I don't have any real figures to use as an example.)
This potency at expiry is expressly tested by the manufacturer and the MHRA.
Many compounding pharmacy products will have an expiry date that is wholly untested and simply done as an administrative exercise. Just slap on a label with a date one month into the future. With the usual rule of "use by end of expiry month" that gives a product life from compounding to becoming out of date of just two months.
For that reason, none of us are at all likely to have any properly determined stability information.
From what I have gathered, the majority ingredient of most levothyroxine tablets is lactose or mannitol. At a rough guess, something like 60 milligrams of an 80 milligram tablet will be lactose or mannitol. Which means that the total of other substances really is small.
If you have a problem with the tablets, then look elsewhere. If they are working OK, I'd accept the small quantity of ingredients.
(For completeness, Aristo contains neither lactose nor mannitol.)
(Adding because I missed this earlier!)
Typical life for manufactured levothyroxine are 18 months to two years or longer. Sometimes the life is shorted for lower dosage tablets.
Thank you so much for your reply! Got it. Very interesting. I actually read that when tested, most meds still contained the same potency even years outside of the expiry date, but that was tested on branded vs compounded meds.
Just to clarify, the information posted above by helvella refers to UK licensed levothyroxine brands. Other countries may not conform exactly to these same standards.
I had a call with Roseway Labs in London yesterday about sourcing a private prescription for T3.
They have an online booking system where you find your appointment in the calendar and pay/book. I was able to change the appointment very easily by calling them too.
They mentioned they offer compounded T4 (I have no need for this) and are very nice to deal with.
A call with their prescriber costs £30. The price of the prescription and meds is then emailed with a payment link and they post out the meds.
I’ll be getting 3 months 5mcg T3 for £75. I won’t be starting it for a few weeks as I have only recently switched T4 brand and will need to retest.
The prescriber asked all the pertinent questions, was super knowledgeable about thyroid conditions and agreed a trial would benefit given my DIO2.
I’ve found them very smooth to deal with and the staff are super nice to talk to.
Thank you for sharing! I actually ordered their compounded T4, felt under-medicated on it and had to go back to my original tablets. However, I want to try their T3 as it's cheaper and easier to get hold of it through them. Hopefully it will work better!
is it worth talking to them about that? The pharmacist prescriber I spoke to said they could tailor the compounding to suit individual needs if poor absorption continues to be a problem.
Julia_T,
You just might be interested in this post I made earlier:
USA ONLY! - IBSA Issues Voluntary Nationwide Recall of Select Lots of TIROSINT®-SOL
healthunlocked.com/thyroidu...
Very interesting, thank you! I took it for a few days, felt awful with under-hypothyroidism symptoms right away, and went back to my regular thyroxine. Interestingly, I've had the same experience with all compounded T4 I've tried so far - taking it for a few days, feeling undermedicated, going back to me regular meds.
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