Hi everyone 💓
Well this is going to be a rant..I've been pushed from pillow to post with my thyroid medication since full thyroidectomy in 2019 (graves thyrotoxicosis), I'm lactose intolerant and have colitis and IBS although I think the IBS is actually the colitis gp only gave me IBS tablets 😠.
I was on T4 after thyroidectomy it contained lactose 🤦 anyway I've tried and been on everything the last being liquid levo unfortunately the pharmacy told me it would be made up for me ,when it arrived it had no box and no leaflet, but I gave it a go...no good it affected my stomach and bowles 🤢, I eventually got back on T3 in October this year so far I've only had a couple of stomach and bowle issues so I'm sticking with them.
Now the rant...I phoned the prescription line at my surgery to do a re order 3 weeks before I was due to run out, I called for them on Tue morning to be told "we can't get them"...just like that ..like it really doesn't matter you need this medication to live😠 I spoke to the pharmacist and told him he had no problems getting them 56 days ago, he told me "I could not have received these particular tablets as they don't have them"...I dug inside my bag and showed him the box they came in, it clearly had the name of the chemist I was standing in.
He snatched the box and then said "well we probably had them on the shelf somewhere" lie as he previously said they don't have these T3 tablets 😠😠😠..I'm honestly so so sick of fighting to get a tablet that's supposed to keep me alive, I tried boots ...sorry no we can't get them, they didn't even offer for my prescription to be left in order for them to try to obtain them, I did however after another walk to a chemist get one to actually take my prescription, but they couldn't obtain them in 10 mg only 20 mg🤷 as I was splitting my dose 10mg morning 10mg late afternoon I'm now left to either take the whole dose at once ..or cut the capsules open and split the ingredients which I find daunting 🤦...I honestly despair how we are treated, I get the impression when they can't provide the thyroid hormone meds it's like they are dishing out paracetamol, but unlike paracetamol we can't nip to Tesco to pick up our T3 off the shelf😠😠😠 we are left to our own devices when our prescription leaves our surgery's it stinks🤨
How difficult is it to obtain T3 without a prescription?
Where to obtain T3 (private prescription)/cost and question about hashimotos/central hypo?
Obtaining Thybon Henning 
Help obtaining the pulse article
Help reading required tests to obtain diagnosis - French endocrinologist 
you could try online pharmacies
Presumably you are after Roma capsules
Some of them only accept private prescriptions
thyroiduk.org/if-you-are-hy...
Hi slowDragon💓
Yes GP prescribed the roma 10mg..I really want to give these a good go, I have as I said had some stomach and bowle issues but this as occurred when going from 10mg to 20mg, it seems the more I increase the worse the stomach/bowle issues become 🤷 I can't find any lactose in this brand, but I've been on them 56 days now and coped better than the rest of the thyroid medication my GP as put me on, I'm a bit nervous trying the full 20mg in one go mainly for the stomach bowle issues 🤦 I don't think 20mg will move my thyroid hormones in to hyper, I'm due my thyroid bloods in 2 weeks so I will get a better picture of how I am on 20mg T3....its just really annoying trying to obtain a drug we need to live slowDragon 😠😠😠💓💓💓💓
Well most people when on JUST T3 after thyroidectomy are going to need at least 40mcg per day …..more typical dose is 60mcg
Usually as divided dose
Likely ready for next dose increase …..increase should be in 5mcg steps
So 10mcg waking……10mcg mid afternoon and 10mcg bedtime
Didn’t you try Teva 20mcg T3 lactose free tablets?
Should be Easy to obtain Teva and easy to cut to increase by 5mcg or split dose
current price NHS paying
20mcg tablets are £56 per 28 tablets
20mcg capsules are £55 per 28
10mcg capsules are £65 per 28
5mcg capsules are £55 per 28
Yes slowdragon I was initially on teva T3 but as I posted on here the GPS I saw at my surgery were blaming all my symptoms on T3.. I know my symptoms have nothing to do with T3, they are parathyroid related, so after a rather heated appointment with the gp I stupidly agreed to come off the T3 and go bk on T4 to see if my symptoms improved ( I knew they wouldn't and they didn't) after 7 wks of being on the T4 teva and having stomach /bowle problems same with teva T3 as it contains mannitol, the gp refuse to put me bk on T3 until I saw the endo.. Saw her in Aug she prescribed the T4 liquid levoroxine that also gave me gut issues, so I again spoke to my gp in Oct to beg to be put bk on T3, I received these roma capsules in 10mg, but now can't get 10s only 20s 🤦♀️and I will say sofar they are better than teva I don't have that constant metalic taste in the morning 🤮 although I have had a couple of gut issues it's been better than teva.. I reckon I'll just have to see how I go with 20mg all at once, see what my bloods are and if I need an increase hope my gut issues don't get worse with more increase 👍
The advantage (at moment) of prescription saying Liothyronine capsules…..is Roma is only brand currently licensed
So you won’t get brand change issues
Hi Birkie. I am on a 3 month trial of T3 and am on the Roma capsules. You can obtain 10 mcg capsules and I am on 2 x 10 mcg daily. Mine are obtained by my GP practice and I have just collected my third months supply this week. So someone is telling you porkies !!!
Hi
It's not so much about getting them, it's my surgery who won't put my prescription in to the pharmacy, the surgery rules are no prescriptions can be sent to the pharmacist until you have one week's supply left, apparently the receptionist told me it's to check for people who could overdose🙄 that's ok if your medication is on the shelf, but the T3 as to be ordered in, the pharmacist always tells me 2/3 weeks, so my script should go down before I run out! But it never does because of the rules.
I've complained several times...the GP receptionist's just don't get it, they keep telling me to go to the automated prescription line and order on there as you can not re order prescription's at reception 😠😠😠 talk about stressed out😠😠
I can understand your frustration. It appears to be a surgery issue. Have you tried speaking with the surgery practice manager? Rather than the receptionist. I ordered my Roma 2 x10 mcg capsules last week on the Tuesday and the Pharmacist told me they would be collectable on the Friday afternoon...which they were. You could always ask for the prescription and seek to get them from another pharmacy if poss for you to travel! The issue I had 3 months ago was theft practice started me on tablets which allowed me to titrate onto T3 gradually. Then they switched me to capsules. When queried it was purely down to cost saving again! I was told the tablets cost £128 per prescription while the capsules were £76 per prescription.Its all about the money!!
Hi
I'm sick to my back teeth of telling the receptionists, and as for our practice manager I've sent e mails and letters she as not respond to any😠 when I asked reception why had the manager not got back to me I was told she gets so many e mails it takes time to answer, so I waited another 3 weeks then I was told she is ill and working from home🙄 that was over 3 months ago now and still nothing from the manager, even a private parathyroid surgeon I'm seeing wrote a report to my gp after I spoke to him over the phone they have ignored that too, so I saw him privately on the 18th November this year for a consultation and ultrasound scan he as identified a 7mm nodule on the left side of my neck and says my bloods show I have a parathyroid problem, something my surgery are denying, I called in on Friday to ask if this report as been received yet as I received my copy last week my son paid privately for that appointment so I would reckon the surgeon will be on the ball with the report, but no my surgery say they have no letter from a private surgeon, they really didn't seem bothered at all about even looking at the post.. Also my parathyroid surgeon as urged me to leave my current surgery after he looked at all my blood work and things I've been diagnosed with, especially kidney stone 👍I'm in the process of looking at other surgerys now👍
Hi BirkieI had my Endo appointment yesterday and I asked him about supply of Roma capsules 10 mcg , 20 mcg via Roma and Tablets via Morningside which I used to be on.He had all the info on his computer. He gave me an option that if ever Roma capsules dont suit Morninside do a 20 mcg tablet which can be halved. The cost of a 20 mcg tablet is £53 for 28. And the cost of Roma capsules is £65 . So if they agree with you Morningside tablets might suit you better and are cheaper for the practice. Just thought of you after my appt
Hi rick2525💓
Thank you for that info👍 as we speak I've had bad guts and stomach since the early hours of this morning with diarrhoea,bloating bad cramps , tried a small bit of toast around 11am and it came right through me bad cramps again..😖 I've had intermitten bouts since going from 10mg to 20mg but I could split it 10mg morning 10mg late afternoon, but the ones I've just picked up I've been on 20mg un- split for around 5 days that's when I usually find out if they are not going to agree with me🤦 it's 5.25 and I don't want anything to eat, still having cramps, I really don't know what's going on! Is it just that my intestines/stomach are so sensitive? ( Lactose intolerant/colitis) or is it maby something else 🤷
Im so sorry you are having a bad time of it. I suffer in opposite direction with bloating and stomach cramps so you have my sympathy. My 3 month trial was up and Endo was delighted with my progress. My tsh is suppressed to 0.09 but Endo said this was fine and not detrimental as long as it dosnt go over threshold other way. I asked him what symptoms to look out for if I went over subscribed and he said they would be palpitations, shaking and diarrhoea. My issues have been caused by faulty DIO2 gene causing cell absorption deficiency which I had to pay for test myself. GP wasnt interested and even said not to show her the test results. I do hope you get some relief from your symptoms soon.
No wonder we get very disappointed/anxious as we don't want to fight for our important replacement but it seems that some doctors just have no idea how we can feel if we don't have the appropriate replacement when it is due.