Please Help! Lactose Free Liothyronine no longer available.

[Unsunghero]

For around six months I have been on 75mcg Levothyroxine once per day and 10mcg Liothyronine four times a day.

Since going on Liothyronine there has been a massive improvement in my health and engergy levels. I have been gradually starting to feel more and more like my old self again.

I took my perscription in towards the end of december and got half my Liothyronine and an IOU from the Pharmacy. When returning to the pharmacy on Friday (3rd Jan) to collect the remainder, I was told the medication is no longer available in the UK.

The GP, Pharmacy and even my Thyroid Specialist who I see will offer no help. The GP told me it is not their problem, I have to just keep phoning pharmacies until I find one that has it, regardles of me telling them I am going to run out and need it urgently. I have phoned 15 pharmacies in the area and had no luck.

I have as of today officially run out of Liothyronine and nobody seems willing to help. I have done some research and found that I can get the equivalent from Germany (Thybon 20 Henning) if I have a private perscription.

I have spoke to my GP daily who will do nothing because I am under the care of a specialist. I have attempted to speak with my Thyroid Specialist who claims he has never heard of Thybon 20 Henning and is unwilling to even look it up. He will only speak to me and discus any of it if I pay £200 for an appointment and wait until next Thursday to see him (a full week with no medication).

The Liothyronine I have been getting for the last six months is by a company called Mayne Pharma.

Can anybody offer any help on this?

[Lalatoot]

I think that Teva liothyronine is lactose free but not 100% sure. You would need to check. I get it on prescription from Boots.. Have no probs with it.

[Unsunghero in reply to Lalatoot]

That would make sense, as my Lactose Free Levothyroxine is Teva.

Have you had it recently? Boots was one of the pharmacies I contacted who told me they were unable to get lactose free.

[Lalatoot in reply to Unsunghero]

Yes I collected the prescription on 23rd December 2019.

[Unsunghero in reply to Lalatoot]

Great, I will go try with them again, although it was 3rd Dec I tried and got told it is no longer available. Thanks again.

[SeasideSusie Remembering]

Teva Liothyronine is lactose free according to ThyroidUK's document on their website. I can't link to PDFs but you'll find the link here:

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

then the different brands of liothyronine are listed, along with their ingredients, from page 11 onwards.

[Unsunghero in reply to SeasideSusie]

Thank you, I will take a look. At least if I can give the pharmacies a list of different brands that are lactose free it will save them the job of trying to find out.

[helvella in reply to Unsunghero]

The MHRA has this document for Teva which does not include lactose:

mhraproductsprod.blob.core....

Should you need, contact details for Teva:

Company image

Address

Field House, Station Approach, Harlow, Essex, CM20 2FB

Telephone

[phone]

Medical Information e-mail

[e-mail]

Stock Availability

0800 590 502

WWW

tevauk.com

Medical Information Direct Line

[phone]

Medical Information Fax

[phone]

[Lalatoot]

Just thought. Are the pharamacy trying to get you 10mcg tablets? Teva only comes in 20mcg. You would need to use a pill cutter. Maybe it is the dose that is the problem if your prescription stipulates 10mcg they won't supply 20mcg tablets.

Tiny though they are it is possible to halve and to quarter them.

[helvella in reply to Lalatoot]

Mayne Pharma (when available) come in 5 and 25 and 50 microgram tablets. So, you are right, there is a dosage issue if changing from Mayne Pharme to any UK product (excepting 5 microgram Morningside - but they are not lactose-free).

[Unsunghero in reply to Lalatoot]

I asked the Pharmacy about 20mcg tablets as a substitute, as I take 10mcg at a time so could easily just chop them in half, I have a tablet cutter. They said that Lactose free is unavailable in an strength.

My prescription is for 5mcg but I take 10mcg four times a day. So 20's would only need to be halved.

[Lalatoot in reply to Unsunghero]

That's not good news. Are you sure that the pharmacy actually know which ones are lactose free? You are going to need something.

[Unsunghero in reply to Lalatoot]

Apparently not, I just spoke with Teva direct who advised me it is in stock and is been distributed to all major suppliers (AAH, Phoenix, Alliance).

I have spoke to the pharmacy again and now I have told them about Teva and the suppliers. They have now said that they can get it but only in 20mcg.

Now I have the problem of getting a prescription for the 20mcg instead of the 5mcg. This shouldn't be a problem as my dose is 10mcg and I can split it. But the GP refuses to write a prescription because I am under the care of a specialist and say only he can change the prescription. My specialist only works Thursday and I can not get to see him until the 16th. I have asked for this to be done over the phone but due to him only working Thursdays his secretary says she can't get hold of him at the moment but is trying.

[Lalatoot]

Know how you feel. I am in limbo between the consultant and GP. The consultant gave me prescriptions for a 3 month trial and I have a week of tablets left. Trying to get an answer as to whether she will write another prescription for me or write to the GP to tell them to prescribe.

[Unsunghero in reply to Lalatoot]

It's awful, it is such a major problem. So many people suffering with it and they seem to do whatever they can to make it more and more difficult for us to get he right medication.

I hope you manage to get yours sorted out. Have you felt better on the trial?

[Lalatoot]

Yes I have generally felt better and folks say I am more like my laid back self! However the endo decreased the levo dose by half when the T3 was added. I expected this so sort of knew what was going to happen. Once I was on the prescribed dose of 50mcg levo and 20mcg lio and when things began to work themselves out I began to get symptoms back as I needed more levo. I waited the 6 weeks and got bloods done which confirmed my thoughts - FT4 0% through range; Ft3 74% through range. Luckily I had a stash of levo so I am on week 2 of increase to 75mcg. See consultant on 4th Feb so will discuss it with her then. In the meantime the GP surgery are horrified at my TSH being suppressed so will ask consultant to explain to them that this is to be expected on combo replacement. Thank goodness for the folks on here otherwise we would all be as in the dark as the medics.

[Unsunghero in reply to Lalatoot]

I really hope you get it sorted out. It amazes me how little GP's know about the problems Thyroid suffers have, and that they have their 'normal range' that they think if somebody is in, nothing else can be done. Even my Thyroid specialist doesn't seem to have great knowledge.

I have had comments much the same from my friends and from work colleagues, saying that I seem more lively and much more like myself. I was actually feeling that for the first time in eight years things were leveling out, then this mess with trying to get my medication.

This really does look like a great place, I wish I had found it sooner, but I'm not usually great with talking to people. I guess the desperation helped!

So the update on the situation is, I can not get a prescription for the 20mcg. My GP still won't write it as I'm under the care of a specialist, and the secretary of my specialist has got back to me to say that he is unwilling to write the prescription without seeing me on the 16th. His secretary confirmed he is fully aware I now have no medication so am not taking it since yesterday.

I really am at a loss of where to turn next. Fortunately I have friends in Germany and America also trying to come up with a solution and get my medication.

[Lalatoot]

Wishing you good luck and all the best.

[SlowDragon Administrator]

Are you definitely lactose intolerant?

Other possible 25mcg T3 available.....some without prescription from Turkey or Mexico

But not sure if any are lactose free

Because Morningside now make 10mcg .....other brands probably no longer available as "specials" are extremely expensive

[Unsunghero in reply to SlowDragon]

Yes 100% lactose intolerant.

The last time I was given medication with lactose in, I ended up hospitalised due to it causing an infection they were supposed to be treating to get much worse.

The 25mcg T3, would not work as for me as there would be no way of splitting a 25 tablet into 10mcg which is what I take.

I will have a look into the Turkey and Mexico option though and see if they do any other doses.

Is Morningside making the 10mcg a fairly new development? I have had no problem for the last six months obtaining it.

[SlowDragon Administrator in reply to Unsunghero]

Yes if you read that post i linked in my first reply

healthunlocked.com/thyroidu...

Thybon Henning 20mcg is lactose free

thyroiduk.org/tuk/treatment...

But Thybon Henning is only available on prescription.

Most UK patients who are refused NHS prescription T3 and can get private prescription currently use this. It's MUCH cheaper than any UK T3

But Brexit is likely a problem for continuity of supply. Probably not until end of year, hopefully not Jan 31st .....but no-one knows

An EU pharmacy can only dispense prescription written by an EU registered medic

If you have recognised lactose intolerance then you should have access to lactose free medication

Full list of UK official options here

thyroiduk.org.uk/tuk/treatm...

[Unsunghero in reply to SlowDragon]

There was no link in your first reply, I'm guessing it is the one you put in this reply? The Healthunlocked one?

Yes, I'm aware that Thybon Henning is the one that I need to get if I can't get my usual one in the UK. I have a prescription from my GP, but for 5mcg, they will not change it to 20mcg, even though I take 40mcg daily, the GP says it is not their problem. My specialist will only discus via a consultation which will not be until next wed.

I am not technically being refused an prescription for T3, they will just not change the doseage on the prescription so I can actually obtain it.

I have already been through the full list of UK available options and even contacted pharmaceutical companies direct. This is how I have found out that my lactose free medication is available in UK, by Teva. My pharmacy can easily get this with a prescription but until the GP or my specialist will write it up as 20mcg instead of 5mcg I am stuck.

This will not result in me taking a higher does, it will just come in higher dose tablets.

[SlowDragon Administrator in reply to Unsunghero]

Yes...well they just don't want to prescribe....Thybon Henning is cheap on private prescription....but as an NHS special request they will pay much higher price

How many days short are you? Between running out completely and seeing Endo?

[Unsunghero in reply to SlowDragon]

I have already run out. I ran out of my medication yesterday and the specialist only works Thursday, so I can't see him until the 16th. So it will be a full week without medication before I can even see him. Then it usually takes at least four days for him to write the letter to tell my GP to do the prescription, and around a week for the pharmacy to place the order and get them in stock.

So I am potentially looking at nearly three weeks without medication.

[SlowDragon Administrator in reply to Unsunghero]

I sent you a private message (see speech bubbles at top left)

Ask pharmacy if they will supply Teva 20mcg as emergency cover until you get new prescription