Tiromel not working

[Janeh1960]

Bit of background: After 14 years of being well on 175mcgT4/20mcgT3 combo as prescribed by an NHS Endo due to conversion problems & very poor health, my new GP has now refused to prescribe it for me. Didn’t tell me he’d stopped it, will not discuss it with me, got his receptionist to contact me after I queried it, no response to a letter i sent, not even a suggestion of increasing T4 to compensate (not that I would agree to that)

I bought some Tiromel on line but it is having no effect at all, all my old symptoms have come back with a vengeance.

Has anyone else experienced this?

I have other Auto immune conditions, am very sensitive to any change in meds and have to stick to same brands of the many other meds I take so i knew I might have a bit of ‘settling in’ to go through but after two weeks of Tiromel I just got worse & worse. It’s like it’s doing nothing at all!

I have two weeks worth of Morningside left which I’m now taking & feeling a lot better, though not as well as when I had Mercury Pharma.

I’ve ordered some Uni Pharma today & hoping & praying that works for me.

I’m so worried, sad & angry about this situation.

I believe my GP is putting my life at risk, I have a AI blood clotting disorder & the three different consultants who look after that always stress to keep ‘everything the same’ meds, diet etc to try & avoid further clots, I’ve already got one useless arm due to an extensive clot & the next one could be in my heart, brain or lung & that’ll cost the NHS a helluva lot more than T3.

[Clutter]

Janeh1960,

As you already know, not all Liothyronine is equal and some people do better on one brand than another.

I would write to your GP (cc your MP) and tell your GP that you believe he is in breach of GMS contract by with-drawing treatment you have been told you need. Say you have been well on Mercury Pharma Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

If your GP withdrew Liothyronine on instruction from the CCG he should be advised that CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your GP to withdraw T3 if that is what happened.

mills-reeve.com/files/Publi...

[Janeh1960 in reply to Clutter]

Thanks Clutter, I did write him a long letter including the information you’ve said, copies of BTA faqs etc & particularly stressed that he should at least keep prescribing until I see an Endo but no response. I have been sent an appt to see an Endo in March so he must have referred me.

By some miracle I’ve still got copies of consultants letters from 14yrs ago showing why I was prescribed T3, (including blood tests results showing Low T3 & high T4) & letters from the Endo & Rheumatologist saying how pleased they were with how much better I was with addition of T3. I must have known I’d need them one day.

[Clutter in reply to Janeh1960]

Janeh1960,

Perhaps a complaint to the GMC that he is not responding to your complaint that you are not being prescribed treatment you have been told you need by and endocrinologist and rheumatologist will get his attention.

[SlowDragon Administrator in reply to Clutter]

Clutter

I am sure it's deliberate, yet again the British Thyroid Association website has been taken down for last 3-4 weeks

[Clutter in reply to SlowDragon]

SlowDragon,

Doubt it is deliberate. Their own members and colleagues won't be able to access information if they deliberately deactivate the site.

[SeasideSusie Remembering]

I'd be very surprised if you actually receive Unipharma. For some months now the usual suppliers that members use haven't been able to get it (some have waited months, some have lost money) and it appears to be restricted in Greece to sight of prescription even for local residents and then usually only one packet at a time. I don't get on particularly well with the brand I changed to when Unipharma became impossible to obtain.

[Marz in reply to SeasideSusie]

I read that beginner1 recently received T3 after 7 months of waiting 😊 Tried to highlight name with @ - but it disappears on my phone !!

[SeasideSusie Remembering in reply to Marz]

I remember one member saying that they had received Unipharma from the 'usual' supplier, can't remember who it was, maybe Hidden but it would be nice to know if anyone else had received that brand recently. It all seems to have gone quiet on that subject lately.

[EbonyEvans in reply to SeasideSusie]

@SeasideSusie

My supplier has shipped 50+ orders of multiple quantities. I know for a fact that twelve people on this forum have received them within this last month (Thank yous in my inbox). NOT ‘that’ supplier. She’s an independent pharmacist name starts with a ‘P’ and not the other lady that went out of business last year.

I messaged her about antibiotics and she also informed me that Dithyron is hard to order now as well. Worse that T3.

But definitely UniPharma not the alternative Ikaros? (I think the name of the alternative brand was)

[SeasideSusie Remembering in reply to EbonyEvans]

That's good news EbonyEvans

[Caggie61 in reply to EbonyEvans]

Hi EbonyEvans,

Would you be so kind as to pm me please with details of this new supplier? You gave me info last year so I'm presuming it's that contact you gave me that's gone bust. Would appreciate this please, the one in Greece isn't reliable any more. Don't want to go through all that delay again.

Thanks

C x

[EbonyEvans in reply to Caggie61]

Hello @Caggie61.

No mine hasn’t gone bust. She’s the same one I’ve used for 5 years.

A few people have told me about another lady I’ve never used that’s gone bust - I can’t remember her name. My lady’s initials are P S.

My September order arrived a couple days later as usual. Please don’t confuse her with anyone else. As I stated - I’ve had several thank yous from members of this forum recently. So definitely not bust.

Ebony

[Caggie61 in reply to EbonyEvans]

Thank you

C x

[EbonyEvans in reply to Caggie61]

Welcome. Did you find the message? Drop my a hello if not. Ebony

[Caggie61 in reply to SeasideSusie]

Hi SeasideSusie,

I ordered T3 from a Greek supplier last June 2017.......was told having problem with supply. They weren't very honest with reasons for delay but then I've lived in Greece and I'm used to the 'selective' truth lol. I've had to pester them with emails on a monthly basis until last week when my order finally arrived. Probably wouldn't have got them if I hadn't caused a fuss. They are Uni-Pharma.

C x

[SeasideSusie Remembering in reply to Caggie61]

Good to know that you got Unipharma brand, most people who have received their order after a very long wait have had a substitute and not everyone is getting on well with it.

[Caggie61 in reply to SeasideSusie]

I did give them a bit of grief so that's perhaps why I got them x

[JudithW in reply to Caggie61]

Hi Caggie I ordered T3 from possibly the same site back in July and still waiting. I did ask for my money back and got no response, I had also been pestering them with frequent emails. I wonder what grief you used to get your med. I have been thinking of contacting the Cypriot/Greek police as it is theft.

I have ended up with Tiromel which is just not working for me. Tearful, cold, weight gain...

[Caggie61 in reply to JudithW]

Sorry for late reply JudithW, I've been having surgery. I emailed them weekly and said I would continue to do so until I got my order or money back. Was told they don't give refunds but would get my order when supply was back to normal. Really hound them and remind them of their obligation. Greek police aren't very helpful generally but doesn't hurt to tell them that you will report them to police. Just lots and lots of emails. Good luck!

[SlowDragon Administrator]

see my replies and links to similar post on T3 being stopped

healthunlocked.com/thyroidu...

which CCG is this?

[Janeh1960 in reply to SlowDragon]

Thanks Slowdragon, it’s Gt Yarmouth & Waveney CCG

[SlowDragon Administrator in reply to Janeh1960]

You MUST be prescribed T3 till endo review consultation in March

I would inform GP Letter of complaint going to GMC if new prescription is not forth coming

Brilliant to still have letters from when first prescribed

[Janeh1960 in reply to SlowDragon]

I’ve booked a telephone consultation with a different GP at my surgery, I will insist that at the very least I am given enough to last me till the Endo appt & threaten to complain to GMC if she doesn’t agree.

Whatever the eventual outcome I will be making a complaint. I’ve never experienced such appalling & dangerous treatment from a GP before.

It cannot be right that a GP with no knowledge of thyroid or me can take away a medication initiated by a consultant.

[SlowDragon Administrator in reply to Janeh1960]

Make sure to take copies of your original letters when first prescribed

And ideally a supportive friend or family member along as witness. If that is not possible perhaps you should record the consultation

[SlowDragon Administrator in reply to Janeh1960]

See Improve Thyroid Treatment campaign on Facebook

Lots of template letters for writing to MP etc

Also they don't have your CCG on list - perhaps you can let them know

[Hillwoman]

A lot of people don't get on with Tiromel because it contains more fillers than most. I found the way to mitigate this problem was to crunch the tablets to a powder rather than swallowing the tablets whole.

[Janeh1960 in reply to Hillwoman]

Thanks Hillwoman, did you find they had no effect if you swallowed them whole but they worked if you powdered them?

[Hillwoman in reply to Janeh1960]

They had much less effect if I swallowed them whole. Crunching to a powder means I absorb it more rapidly.

[Sabine_es in reply to Hillwoman]

That is truth, since some time due to swallowing issues I started dissolving my T3 under the tong and my results are now 15% higher. The same with T4.

[JudithW in reply to Hillwoman]

Hi Hillwoman, though I understand that crunching Tiromel might give you a more rapid absorption, I cannot rationalise how it can give you more effect? 25 is 25 so to speak. I am on Tiromel now and suffering so willing to try anything.

[helvella in reply to JudithW]

If the tablet fails to disintegrate fully, I can see a possibility.

Around the turn of the century, Levoxyl was roundly criticised for failing to deliver claimed dose because it did not disintegrate and disperse adequately, to the extent that they fully reformulated. The ironic result was a tablet that could over-expand in the throat - leading to warnings it must be taken with plenty of water!

(Yes, Levoxyl is levothyroxine rather than liothyronine. But it is suggestion as to why crunching might well be effective.)

[JudithW in reply to helvella]

Helvella thank you, Hillwoman mentioned the fillers in Tiromel that might be the cause.. I will try crunching tomorrow anything to reverse the increasing symptoms.

[Hillwoman in reply to JudithW]

I wasn't claiming that the effect was greater than the tablet dose, but I find if I swallow Tiromel whole they work much less effectively, not just more slowly. Possibly, they don't completely break down, or something else occurs in the gut which hinders full absorption, but I don't really know.

[Marz]

Ooops ! Sorry - silly mistake. Glad you have a well behaved T. 😊 Now I will be spendibg the day wondering who it was !

[Marz]

Will try and take a look - thanks 😊