Saga of the pharmacy T3, the story continues 😂

[birkie]

I posted about obtaining my, T3 for which a gp in my surgery decided to stop my medication until I see the endo.. Explained I have around 8 possibly 9 days T3 left,.. Gp.. In her wisdom.. "ho you'll see the endo before your T3 runs out😂.. Appointment 27th Dec.. 😂 what world are these gps living in? 🤦‍♀️Anyway update on the update 😂.. So... Gave me mercury pharma containing lactose (lactose intolorent) asked for Roma T3 (been on this for over 12 months).

Can't get Roma🤦‍♀️... The pharmacy as been trying for 5 days now🤦‍♀️ so I managed to get down to the pharmacy today, quick visit, pharmacist not in till 12..🤦‍♀️ BUT there is a prescription for 20mg of roma🤷‍♀️..

I've been splitting my dose( 10mg,10mg) ...so I just said.. "give me the 20s, I'll just take the powder out and split it 10..10..This young gentleman came over (not the pharmacist) and told me.." your not allowed to spilt these, they are capsules "... 😂😂 Told him" I've been on them over 12 months, I know they are capsules ".." And I take the powder out and just take them that way, forgoing the plastic capsules, because I'm having enough problems with my bowle /stomach

He said.." that's not something we recommend "... So now very p###ed off I say..." well what do you recommend?.. I leave here with no thyroid medication? I now have none left, I don't have a thyroid.. Really what would you recommend I do"!!

Glad to report he scuttered off, tail between the legs😂

So I get home with the 20mg T3 roma which they said they couldn't get... And 15 mins ago I get a knock on my door to a lady holding a bag with medication ... Open it... Its teva 20mg T3.. 😂😂 I was actually worse on teva🤢.. The lady relays a message to me... From the pharmacist.... Take these as we don't recommend you take the powder out of the roma😂... Wow... I could write a book🤔

And just to rub a ton of salt in our wounds, my pharmacist was not in till 12...when you ring between 1 and 2 there is a message.. "The pharmacist is on lunch between 1 and 2..please call back after 2...thank you!.. Well I never😂

[TiggerMe Ambassador]

From bust to boom in one afternoon 😅

[birkie in reply to TiggerMe]

I know... You just can't make it up... 😂 And I can't even tolerate the teva T3.. 🤷‍♀️

[TiggerMe Ambassador in reply to birkie]

Shame we can't have a Christmas amnesty and all swop our surplus 🙃

[SlowDragon Administrator]

Hi Birkie

Will flag helvella who has heard direct from Roma that there are ZERO supply issues

Your pharmacy needs to get its act together

[helvella in reply to SlowDragon]

Email directly from Roma on 24/11/2023:

Hi helvella, Thanks for your email,

I am happy to confirm we have no issues with supply or availability for any of the three strengths of Liothyronine Capsules. Do you mind me asking where the information is from and if it is regarding a particular strength? Obviously if we can do anything to help we will.

[SlowDragon Administrator in reply to helvella]

Mind you Morningside Healthcare have told me several times directly that there’s no issue with 20mcg Liothyronine Morningside brand

But I, and numerous other members, not been able to get any for at least 2 months

Morningside just denying it is a problem

[helvella in reply to SlowDragon]

Though with Morningside you have the extra issue that the price they want to charge seems excessive - which might be reflected in the willingness of distributors and pharmacies to order and deal with it.

Roma uses an extremely simple list price for their products. So that issue does not exist for them.

[SlowDragon Administrator in reply to helvella]

Morningside presumably hoping people will get 10mcg prescribed instead at 5 times the price

[helvella in reply to SlowDragon]

What we in general do not know is how much a company charges (if they don't have a list price) - it is a contractual negotiated term.

The tariff prices are what the NHS will reimburse pharmacies - not what they will get charged.

If their prices are more than tariff prices, someone, somewhere, will make a loss. A very good explanation of non-availability.

Their 10 microgram tablet is tariff price - because it is the only one - and is extraordinarily out of line with 20 microgram tablets.

[Goldengirl01 in reply to SlowDragon]

I eventually managed to get morningside from a chemist, not my normal one but a few miles away, I had to post the prescription so had it tracked in case it went astray, that cost me £7.35 then the pharmacist had to post the tablets back charging £7.45 as he said nhs don’t pay postage. That was £14.80 out of pocket when you can get to your local pharmacy and pick them up for nothing. Maybe I should send the bill to morningside 😏

[SlowDragon Administrator in reply to Goldengirl01]

😂😂😂

[birkie in reply to Goldengirl01]

That's ridiculous, and so wrong, why do we seem to get the sticky end of the stick being thyroid sufferers 😠.I have a good friend who's a diabetic, we talk every now and then.. Bump in to each other in the street, she as nothing but praise for her endocrinologist (probably because her endocrinologist is a diabetic specialist).

She as no problem getting her insulin (probably because its on the pharmacy shelf) in contrast when we meet, I'm slagging off my treatment, she's praising her's.

Shouldn't we be receiving the same amount of care🤔

[Goldengirl01 in reply to birkie]

You would think but when money is involved.......

[birkie in reply to Goldengirl01]

Your so right,👍 seems the NHS are now a business, my old gp reminded me of this a number of months ago, a lovely member on here was telling me about costing of T3.. Forgive my memory I can't remember who it was🤦‍♀️.But it was in connection with the price of T3 in 5,10,20s..my gp prescribed 20s first I found taking a full 20mg made me feel hyper he then prescribed 5s..over the next few months with bad gut/stomach problems I started to take the powder out.

I went back to pick up my next script, but the pharmacy told me they could only get 10s (this is the Roma T3) I didn't mind as I was splitting my meds 10,10.5.

I had an appointment with this gp, on a different matter (primary hyperparathyroidism) he noted my thyroid medication saying why did I pick up a script for 10s..i said because that's all the pharmacy could give me.

He gave me a lecture on how he couldn't keep giving me a script for 5s if I was getting 10s..🤦‍♀️ What a Duffus 😂.

I did explain it wasn't my choice to take the 10s it's all they had.

I found out the 10s are more expensive per month than the 20s and the 5s.. 🤦‍♀️ What a shambles 😠

[birkie in reply to SlowDragon]

Yeah slowdragon, helvella did the detective work🕵️‍♂️ no problem with the Roma, I mentioned this when I was phoning the pharmacy, got a load of tosh about it not being a distribution issue, but what they get sent🤦‍♀️.As I tried explaining... We can't just swap, chop and change thyroid medication because its what they can only distribute.

Just got a load of gaslighting.. So had to go down in person.

And as one member put it.. They have no idea how much this is stressing me out😠.

Plus the flipping gp should have known better than to stop my medication in the first place 😠 although when I see the endo I will be refusing all synthetic T3, T4.. Asking for NDT.. If the endo does not comply I'm coming out and complaining to PALs.. I've got all the proof in my blood work and photo's of my 💩.. 👍

[SlowDragon Administrator in reply to birkie]

As your prescription presumably says

“ Liothyronine CAPSULES” the pharmacist should ONLY supply capsules

And the only company that currently makes liothyronine capsules……is Roma

In 3 different strengths

5mcg

10mcg

20mcg

But agreed …you may find NDT (Armour) suits you better as it’s “slower” release

Beware Erfa NDT contains lactose

[birkie in reply to SlowDragon]

Thanks slowdragon for mentioning the Erfa👍.. I really don't know what my pharmacy is doing🤦‍♀️.But STUPIDLY yesterday I thought.... 🤔Why don't I give the teva one more go, see if I get the same effect... Well I was on my sofa cramps, bowles erupting, felt so sick sat on the toilet for half an hour, couldn't eat anything after, went to bed with a hot water bottle on my belly😞... So whatever is in teva it does not suit me.

Im now splitting the 20mg roma until I see endo👍

[Easylover]

Enjoyed your post 😆

[WaystarRoyco]

I’m so glad you seem to be able to keep a sense of humour with it all birkie . 👍🏼

[FallingInReverse]

Reading your posts like a good book!

My question is about that lady/pharmacist helper showing up at your house. Did that really happen? Is that… normal? In the US that would never ever ever EVER happen in a million years!

[Alanna012 in reply to FallingInReverse]

A pharmacy in my area employs a person with a van to drop off meds so it does happen.

[Goldengirl01 in reply to Alanna012]

In my area they only do that if you can't get out, they did that for me when I had my hip operated on but it kept being delivered to a neighbour so had to ask another neighbour to go to that neighbour to get the meds I'm still 😁 I'm not stressed at allllll

[RedApple in reply to FallingInReverse]

FallingInReverse ' In the US that would never ever ever EVER happen in a million years!'

Much as we might complain long and loud about the rapidly declining UK NHS, there are still some things that seem to work ok for some people in some areas. 😊

[birkie in reply to RedApple]

I found out this service is aimed at disabled people, people with cancer and other ailments that prevent them from picking up there medication and rightly so👍 because I fall in to the disabled category I get this service, but when possible I always say I will call in to pick my medication up, and would only use the service when I was unable to get down to pick it up in person ,obviously the pharmacist probably had a fit I was taking the power out to split it, so rushed the teva to me.. A medication I can't take anyway😂

[FallingInReverse in reply to RedApple]

100%! I love reading between the lines to pick up the nuances of it all. And of course so many more similarities to the US , at least when it comes to thyroid, than one would think on the surface.

Incidentally, in the US there is a growing pharmacy staff “movement” as we speak to highlight how they are overworked. Here’s an article I found that is long but actually gives a lot of behind the scenes details as to what’s going wrong. I’m surprised the date is 2021 as i just recently heard of it: gpha.org/pizzaisnotworking/

This month my pharmacy started limiting hours and closing on weekends. But there are 4 pharmacies within 10 minutes of me so not sure it will matter. That being said, in this country pharmacists are seen as people who work at a store counter vs anyone who would give medical advice ever. But now that they do more vaccine, it’s coming to light that they are much more qualified than just retail employees.

[Brightness14]

I live in France everything is closed on a Monday and then there is the 12-2pm lunch break.

Seems like the UK is copying France and not in good ways, either. At least there are same days appointments with the GP. Only trouble is the saga of the TSH is over here too.

[birkie in reply to Brightness14]

I've been trying for over 5 days to obtain the meds, but as you point out.. I was first shocked the pharmacist was not in till 12, then they have a lunch break between 1 and 2....no flipping wonder no one can get medication when the pharmacist don't roll up to work till 12, then pop's off for lunch at 1 till 2...🤷‍♀️

[Brightness14 in reply to birkie]

Exactly when I first got married in the UK back in 1967 I had a full time job plus two other part time ones.

[LuckyKat]

I bought empty capsules from Amazon so that I can open larger doses and split them, if that helps.

[birkie in reply to LuckyKat]

Actually I take the powder out of the capsules as I'm trying to eliminate anything that effects my bowles /stomach, I have bad colitis and lactose intolorent 🙄 but I just loved the young gentleman's face yesterday in the pharmacy, telling a thyroid medication veteran, her medication is a capsule!! 😂💊 I've only been taking them for over a year... Doh!! I know they are capsules young man 😂😂😂

[Alanna012 in reply to LuckyKat]

You can buy empty capsules?! Yay!

[SilverSavvy]

Gah...endless trauma. It is good that you can still laugh but I wonder if any NHS staff involved have the faintest idea how much stress the system is putting you through...or that the very WORST thing for someone with no thyroid is.....STRESS!

I recently had to nurse a family member at home who had been discharged from hospital within 24hrs of a major operation with NO analgesia ('oh, buy it over the counter'), insufficient catheter bags and a week's delay in getting back into the hospital for post-op consult because the radiology dept was 'too busy' to do a relevant procedure. (Increasing the risk of infection by 50%). Two wounds, no advice, no district nurses to visit and no support of any kind. Couldn't even take him to an ordinary A&E if there were problems as op had been too sophisticated and required a SuperConsultant. Who was 3hrs away and went on holiday the day after the op. Stress central.

Two weeks later I caught Covid and it's been ROUGH because the NHS in it's wisdom decided I didn't need a jab for 14 months.

Like you say Birkie, you couldn't write it. Or you could, but no one would believe.

[birkie in reply to SilverSavvy]

I concur with everything you just said 👍 and that treatment of your family member shows how out of touch the NHS really are.They make it so hard for us and themselves, particularly with red tape, ho we have to do this before we can do that🙄.. We have to order that in🙄.

When I was in hospital in thyroid crisis my ward doctor who by the way was one of the good ones 💞 arranged for me to see an endocrinologist at my bedside as I was so ill, hooked up to just about everything,.

The endo never turned up😠.. Apparently she'd gone on leave, but she took the appointment for 1 o'clock with me🤷‍♀️.

My poor ward doc apologised profusely saying it was bad conduct on her part, and he never got a good answer as to why she couldn't attend the 1 o'clock appointment other than on leave.

He arranged another appointment with an endocrinologist, who refuse to come to my bedside.. So I had to go to him, a town over.. In a wheelchair, In a taxi paid by the nhs.. 🤷‍♀️ Now, you'd think my hospital would have more than ONE endocrinologist on call but no!! Don't pay for a second endocrinologist in this hospital... If she goes on leave and patients need to see the endocrinologist, let's pay for taxis to ferry them to the next town over😂 really don't make for good business sense does it😂.

I'm afraid to say my experience with the NHS as been abysmal, both gp service and hospital service and I don't see it improving anytime soon😢

[SilverSavvy in reply to birkie]

Absolutely awful. I am so sorry you hv had to go through all this

[WaystarRoyco in reply to SilverSavvy]

OMG SilverSavvy . I’m so sorry you’ve had to go through that. It’s so wrong.

[SilverSavvy in reply to WaystarRoyco]

Thanks for yr support Waystar. Dreadful hospital experiences are all too common by the look of it on this site. My best advice to everyone this Christmas is: don't get sick, fall over or otherwise need an op

[birkie in reply to SilverSavvy]

😂😂😂😂😂 So true sliverSavvy.. I'm ordering a pile of cotton wool of amazon as we speak, going to cover myself in it and hibernate till the spring.. 🐢🤣🤣🤣🤣🤣

[SilverSavvy in reply to birkie]

Sounds like a plan

[WaystarRoyco in reply to SilverSavvy]

I know. It’s a bad situation. My father in law took ill earlier this year and had to wait for hours in an ambulance outside A&E before they’d see him. Then having admitted him, they threatened to discharge him days later before they’d even worked out what was wrong and he was still fully symptomatic (basically, losing blood, so much so they were having to give him some). My OH and I had to intervene and speak to the consultant or I do not know what would have happened. It’s truly frightening.

[annca1 in reply to WaystarRoyco]

so shocking. I hope your father in law was OK, despite appalling neglect x

[Brightness14 in reply to SilverSavvy]

On reflection I think that I will stay put in France after all.

[meme]

Did you get my PM Berkie?

[birkie in reply to meme]

I'll look now👍

[Bearo]

I’m actually impressed the pharmacy came out to you with an alternative, even though it was no use to you, because they were concerned. After all, you had your prescription but they delivered something in addition to that, on the off-chance it would help. Maybe we have to be grateful for the odd small mercy!

[birkie in reply to Bearo]

Can't take the teva, and I explained why getting it would be of no use🤷‍♀️ I'd need to stick with plan A split the Roma 20s.My pharmacy do this service, mainly for patients that can't get to the pharmacy, disabled people come under this service to, and I'm registered disabled.

But really it's a waist of money giving me medication I can't take (teva) how much did that prescription cost the NHS? How much to deliver a medication I cannot take 🤷‍♀️

[Francis1957]

Hi I can't take Teva also I am Coeliac and it really upsets my gut but, its the cheapest I've heard, in contains mannitol which is a filler. Also with T3 I take that but my Endo/Diabetologist consultant had to me down as a patient in need of it for the Dr to prescribe, otherwise Drs don't prescribe usually.

[birkie in reply to Francis1957]

I've come to the end of the synthetic thyroid medication road (4 years) (total thyroidectomy 2019) I've been on every thyroid medication since then except for NDT, my blood work over the last 4 years are abysmal, all the surgery keep doing is stating on the TSH... HYPOTHYROID needs to adjust medication 🤦‍♀️ it's the flipping absorbtion /malabsorbtion problem I'm having, but they just don't get it🤷‍♀️.This is what I've been telling several gps.... 1.. I've got server diarrhea, cramping, inflammation, felling sick and actually being sick.

2..if I'm doing this then the thyroid medication is not absorbing into the body, thus not working well for me, it's causing my colitis to flare up, and I can't increase because the symptoms become worse... Catch 22.

You don't need to be a rocket scientist to figure that out doc!!

So I'll see what the endo says on Dec 27th👍

[Francis1957]

Good luck and before you go write down any symptoms you have so he can listen to your side of the argument, I hope you get the treatment you deserve. Luck will have it Endo will fight your corner for you.

[BumbleyM]

Hello Birkie, sounds like you have really been put through the mill - teva does seem to have reactive fillers in it - I can't take any teva tablets either... Re the absorption.. it took me until age 52 to realise that gluten had damaged my gut - the classic leaky gut issues, so I tried the AIP system for about 6 months - hard to stick to,but it allowed a reset, during which time I had several blood tests re nutrient absorption - showed up some real holes - eg b6 is an essential part to thyroid hormone processing,so I now take some high bio-availability supplements matched to my reactions to various food groups.. the blood tests are not cheap, but going armed with them to see the Endocrinologist got me the T3 ( I'm a poor converter ), and that, coupled with a serious overhaul of my diet, has really helped. The NHS no longer has enough staff to investigate thoroughly for each individual, I believe ( postcode lottery ), sadly , so I researched what might prove useful.I do think we underestimate how important not just adequate, but good levels of nutrients and hydration are to get our faulty endocrine systems going again ( or replaced following surgery ) - its like a fragile ecosystem in miniature.I do hope you have success with your appointment 👍

[birkie in reply to BumbleyM]

I'm lactose free, no dairy, keep to a very bland diet, I did a food diary after I was diagnosed with colitis /lactose intolorent and all was well until my thyroid went nuts in 2018,given anti thyroid drugs and all hell broke loose.Back to all the bad colitis symptoms, but it was found to be the anti thyroid drugs (gastro diagnosis ) so I went into thyroid storm and subsequently had my thyroid removed in 2019, then given T4 and bang all symptoms started again (colitis 😞) been that way ever since, no matter what they put me on in the synthetic thyroid medication I suffer.

I had 2 procedures this year one colonoscopy for the serve diarrhea, cramps, inflammation because the gp wanted to rule out cancer because of what I was passing. 💩

Then had the camera down the stomach, found a hiatus hernia but nothing else.

I'm on T3 roma but every synthetic thyroid hormone I've taken as not worked for me, I've never reached euthyroid in 4 years 😞