Obtaining T3...🙄: Hi everyone 💓 Well this is... - Thyroid UK

Thyroid UK

129,499 members152,285 posts

Obtaining T3...🙄

birkie profile image
65 Replies

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🤨

65 Replies
SlowDragon profile image
SlowDragonAdministrator

you could try online pharmacies

Presumably you are after Roma capsules

Some of them only accept private prescriptions

thyroiduk.org/if-you-are-hy...

birkie profile image
birkie in reply to SlowDragon

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 😠😠😠💓💓💓💓

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

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

birkie profile image
birkie in reply to SlowDragon

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 👍

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

The advantage (at moment) of prescription saying Liothyronine capsules…..is Roma is only brand currently licensed

So you won’t get brand change issues

rick2525 profile image
rick2525 in reply to birkie

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 !!!

birkie profile image
birkie in reply to rick2525

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😠😠

rick2525 profile image
rick2525 in reply to birkie

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!!

birkie profile image
birkie in reply to rick2525

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👍

rick2525 profile image
rick2525 in reply to birkie

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

birkie profile image
birkie in reply to rick2525

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 🤷

rick2525 profile image
rick2525 in reply to birkie

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.

shaws profile image
shawsAdministrator in reply to birkie

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.

RedApple profile image
RedAppleAdministrator

Try contacting pharmacy2u.co.uk/

They claim to be 'The nation’s largest online pharmacy' so we might expect them to be able to obtain what you need.

birkie profile image
birkie in reply to RedApple

Hi Red apple💓

Thanks for the link👍 the last pharmacy I tried who actually managed to get me the T3 roma 20mg not 10mg ( just delivered them now 😁) said he could probably obtain them but in 20mg only🙄 and their is only 28 capsules in this box ( 20mg) which will last 28 days🤦 HONESTLY!!! And my surgery will not let me have another prescription until I have a week's supply left....it's enough to drive you mad😠😠😠

RedApple profile image
RedAppleAdministrator in reply to birkie

It's truly shocking and despicable that we have to jump through hoops to get 'life sustaining' medication. As you say, it's not as of it's paracetamol that we can just pick up in a supermarket. 😡

shaws profile image
shawsAdministrator in reply to RedApple

I agree with you and many do have to jump through hoops to try to get - at the very least - a trial of thyroid hormones.

Our 'old fashioned doctors' seemed to be more knowledgeable at diagnosing patients without blood tests and no internet connection and I think a trial of NDTs (now withdrawn in the UK) was given and it restored health in many people.

Kandahar profile image
Kandahar in reply to birkie

I have to buy my t3 from an online pharmacy at around £11 for 100 25mcg Tiromel, plus postage. I taken three a day, divided into three doses, starting an hour before breakfast. I seem fine, despite a fast heart rate. I’ve not given the pharmacy are because I thought that wasn’t allowed, but if you message me, I'll give you the details.

birkie profile image
birkie in reply to Kandahar

Hi Kandahar

I can't afford to pay for my prescription 😔 I have managed to obtain the T3 from my 24 hour chemist 28 tablets 🙄 the only real problem I have is with our surgery's automated prescription line, that when you phone up to do your prescription to early ( like in my case the pharmacy needs 2/3 weeks to obtain the T3 from the supplier) my surgery won't put my prescription in until I have one week's supply left🙄 I've gone to complain numerous times saying my prescription needs to be sent at least 2/3 weeks before I run out!! I may as well talk to the wall for all the notice they take, plus you never get to talk to the same receptionist so things get crossed, I intend to call in again next week, to again explain the automated prescription line is not how I should be getting my re script🙄 crossing everything they understand, but not holding out any real hope..😠

Kandahar profile image
Kandahar in reply to birkie

So sorry to hear that. I thought you must be paying the ridiculous price of around £300 for 28!

I have a brilliant GP and they do just about everything I ask, especially for my now physically and mentally disabled husband. But When I saw an endo in 2019, he told me about the extortionate price and saidId need to source my own from Germany. Which I did till Brexit. Then another friend on here told me about the online pharmacy. Snag is, I’m pretty sure they don’t do your version of t3, so I can’t help.

Unless, of course, the experts on here can advise and you could keep some Tiromel by you to fill in if your surgery lets you down.

Advice, please, anyone!?!

birkie profile image
birkie in reply to Kandahar

Hi

My surgery need to pull there socks up and stop going by stupid rules😠 the receptionist's I've spoken to all said.."just ring in your prescription as normal" for goodness sake that's the whole problem, you don't send the prescription to the pharmacist until I have one week's supply left, then the pharmacist as to order in the T3 it takes around 2/3 weeks 🙄 does this compute GP receptionist!!! Obviously not because they keep doing the same thing hoping to get a different outcome😠😠

Kandahar profile image
Kandahar in reply to birkie

It was too smug of me to say that my surgery is brilliant. Sorry!

Seems you can’t get past the receptionists. That’s not right, although they can be a difficult breed. If you are suffering, can’t you get to speak to your GP? Would he or she be any more helpful?

Where are you? Could you change to a surgery that is thought well of locally? Though, I suppose, another one might not want to take you on with such a high-cost medication. Message me and we could talk. Lynnx

Kandahar profile image
Kandahar in reply to birkie

just looked up Pharmacy2you. Why don’t you change, after investigating local pharmacies to see if they can source your meds more quickly? Could be that an online organisation like that is too large give you a faster service. Hope it could be worth trying. Or have you already done so?

Of course, so many of our symptoms make doing ANYTHING so difficult!

shaws profile image
shawsAdministrator in reply to Kandahar

If you are in the UK we should not have to pay for replacement thyroid hormones.

birkie profile image
birkie in reply to shaws

Hi shaws❤️

I couldn't even afford to pay for my medication 😔 my son paid for me to see a private thyroid /parathyroid surgeon who as identified a 7mm nodule on the left side of my neck the very place I've been going back and forth to my gp about since 2021, the gps diagnosis.. Seasonal, hay-fever 🤦‍♀️.. My gp as dismissed my blood work but the private surgeon as said I have a parathyroid problem due to my bloods 🤷‍♀️ gps have no idea what they are doing to us by not giving us the medication we need when we need it 😠 and dismissing blood work and symptoms, it smells like a conspiracy to me!! 🤔🤔

shaws profile image
shawsAdministrator in reply to birkie

No wonder so many people on this forum are frustrated about their health due to inept doctors. Also what happens to some people who do not have access to online and I wonder what happens to them. Probably always symptomatic and no where to turn.

BB001 profile image
BB001 in reply to birkie

Could you see your GP and ask them to send you to an NHS endocrinologist? Take copies of the private endos report and give a copy to your GP for your file and send a copy to the NHS endo several weeks in advance of your appointment.

Jazzw profile image
Jazzw

This is horrific. I’m so fed up with hearing how so many of us here are being treated—it’s become a daily occurrence to hear of such awful encounters. What the hell is happening??

So… first off, big hugs. xx Can only second the “try an online store” suggestion—Pharmacy2U might be big enough to be able to buy in pills that smaller pharmacies baulk at (presumably because of the fear of buying expensive stock that they then can’t get shot of before the expiry date).

Secondly—do you have a halfway decent MP that you could complain to? Have you tried anything like that before? It might not go anywhere but could be worth a try. If you have a MP like mine it won’t work but I guess I can hope for you!

birkie profile image
birkie in reply to Jazzw

😂😂😂😂😂 just laughing at the mp bit...I live in a very small coastal town we have 3 small pharmacy's and I'm pretty sure the mp for my town still uses a horse n cart 😆...no!! joking aside our MP is invisible to us I've never seen him in our town at anytime 😠 I'd probably need to write a letter a day for 10 years and then I wouldn't count my eggs he would do anything, plus I can't afford to buy my medication I've to rely on the GP and NHS..... unfortunately 🙄..thanks for the hug I honestly need one I'm so sick of hearing how hard it is for the NHS at the moment and I'm afraid your just going to suck it up....bah Humbug nhs😂

Jazzw profile image
Jazzw in reply to birkie

Dammit. Horse and cart eh? Sounds about right. Sounds similar to my MP situation in fact.

It is hard for the NHS at the moment, we all get that, but goodness, don’t they realise how hard that makes it for someone who’s suffering? I just spoke to my 80 year old Dad who’s waiting for surgery to unblock a 4 inch blockage in the artery that branches off from his aorta into his left leg (so in lots of pain, leg ulcers won’t stop leaking). He can no longer go private (he would if he could) because the risks of surgery are now too great. He’s also now developed some worrying new symptoms that seem unrelated—lost all appetite, finding it hard to drink. Waiting for surgery has now gone on for months. A cynical person might think it’s starting to look like the surgeon hopes he dies before he has to operate. Dad’s clearly now too old to be a priority.

What the hell are people supposed to do? This is a man who’s also still trying to work full time (yep, my father’s work ethic is insane…. I did say 80. Not a typo). But you see he isn’t—or rather, wasn’t until he started having to rely on taking enormous amounts of co-codamol—a doddery old man. But now I have a feeling he’s not going to make it. :(

The official stats will make that seem fine. Had his time. Over 80. Who cares eh? Throw him on the pyre. But he employs 3 other people. When he goes, so do their jobs.

(Wasn’t how all that was supposed to turn out. My brother in law and sister were supposed to carry the business on but BIL’s bipolar diagnosis has kind of scuppered all that—and no help to be had with that either, of course. You only get help if in dire crisis and threatening suicide.)

So here we are, at the end of 2022 with everything turning to shit…

Turns out it wasn’t the pandemic that did for us. It’s what’s followed. And what came before…

birkie profile image
birkie in reply to Jazzw

Your comment is so true jazzw and also sad at the same time😔 I think the same as you that our elderly mother's/father's and other family members are just thrown away today as not worth bothering about..my aunt's 86 last year she became very ill lost so much weight but her GP just put it down to age and the fact she had no appetite, I said their must be a reason she as no appetite!.This went on until my cousin got her an emergency appointment and made them take blood..came back as diabetic but still they didn't want to treat her saying " we really don't feel you would feel any better on insulin, we will wait and do Futher bloods.

They did!! and her level was borderline so definitely wouldn't treat her😠 she is now house bound wasn't before she was very active, she fell and broke her foot about 3 months ago and not one doctor as seen her....god help us the NHS is not fit for purpose 😠😠😠

Jazzw profile image
Jazzw in reply to birkie

I’m so sorry to hear that about your aunt. That’s just heartbreaking. :(

Sending you another big hug. Wish I could send you more, like a big emergency stash of T3. Alas, I can’t. So hugs it’ll have to be, sorry xx

BB001 profile image
BB001 in reply to Jazzw

You're aunt might benefit from adapting her diet. Has she seen Michael Moseley's diet for diabetes? thebloodsugardiet.com/

google.com/search?q=michael...

birkie profile image
birkie in reply to BB001

Hi BB001💓

Yes both myself and my cousin have got her to change her diet, although at present my cousin is fighting with the surgery to do more blood work, as for her foot they couldn't care less 😠

rick2525 profile image
rick2525 in reply to birkie

Unfortunately the NHS is run by managers who run and hide when they cant answer your questions. Earlier this year I was referred by GP for urgent 2 week referral for colonoscopy. The referral from GP stated suspect colorectal cancer! When I got the letter to make appointment I rang up to be told no appointments available. This to and fro went on for 6 weeks!!I complained and a General manager rang me and assured me giving me his mobile number to call if I had any problems. Said the head of admissions would ring me. She didnt. I left two messages on General managers phone. He never rang me back.After 8 weeks I had the procedure to remove bowel polyps. The stress caused was imense. The NHS sadly is run for the people who work for it now and the patient takes second place

shaws profile image
shawsAdministrator in reply to birkie

That's awful that the elderly people seem to be ignored or not useful enough and therefore don't appear to be given a sufficient dose to resolve their symptoms.

Kandahar profile image
Kandahar in reply to birkie

My husband is 87 and our surgery is brilliant. Mind you, I wouldn’t like to be with any of the others around here. Perhaps they just do what I want so I’ll stop nagging them! We are also doing reasonably well with Royal Berkshire Hospital where they do as much as they can with a man who has gradually become physically and mentally disabled. Even giving him radiotherapy of massive, ugly cancers on his head.

I have no suggestion that can really help anyone not so lucky as we are, but I do believe we have to keep fighting. And that goes with most situations in this modern world, where nothing seems as efficient as it used to be. Otherwise, it will only get even worse.

Back in the 80s when ‘customer service’ was first invented, I commented that it would mean that most customers wouldn’t get a service any longer. Sadly, I was right.

Sorry to maunder on…it’s been a very stressful day.

birkie profile image
birkie in reply to Kandahar

Hi

I agree with you on customer services, 👍 I'm sorry to hear about your husband, I looked after my dad when he had cancer unfortunately he had a bad GP like me who just kept saying he had laryngitis, when in fact he had throat and lung cancer.

Lost him in 2001, but I'm glad you seem to have a good gp👍 yes we have to keep fighting, but if someone told us 30 years ago our health service would turn out as it as I don't think we would have believed them🤷 I can concure with the stressful day also, wishing both yourself and your husband all the best and I hope we can all have a good Christmas 🌲☃️☃️☃️

Kandahar profile image
Kandahar in reply to birkie

Thank you for the kind wishes.

And a happy and health Christmas and new year to everyone. X

Delgor profile image
Delgor

I just wanted to send you a big hug Birkie. It's bad enough having a condition that causes so many problems let alone having the stress of trying to get the right medication for it. I even had problems recently with getting another prescription (not thyroid) and was told by several chemists that it wouldn't be in until at least January which was concerning as I'm sensitive to change of medications. Hubby did a check online for me and the very same Boots chemist who gave me that info apparently had two boxes according to their online store checker. Drove once again to their pharmacy and explained the situation and then they conducted a search and found same - I know it doesn't help you but perseverance can pay off and hope you get sorted soonest!

birkie profile image
birkie in reply to Delgor

Thanks for the hug.....I think I thanked the wrong person before....😆 My Little grey cells are currently black😆..I can't believe how much this pharmacist was lying...his face flushed when I produced the box with his pharmacy on it..😆 I often wonder if they are in khoots with GPS in not wanting to prescribe T3 to us? So we have to go bk to out GPS and complain and then them saying "well you can go bk on T4😠😠😠😠

Delgor profile image
Delgor in reply to birkie

No worries Birkie - I just feel so much for you! Dr Skinner was the virologist who I saw all those years ago who unlike everyone else listened to me and BELIEVED me and put me on NDT which undoubtedly gave me back my life. It's hard to believe that I'm in the same position once again but from everything that I have read most people who have had a thyroidectomy or RAI ablation need T3 to feel well again. As I've also been reading up because I now have another multi-nodular goitre it seems that it is more likely that a total thyroidectomy lends itself to parathyroid glands being involved which is obviously what has happened to you. I'm certainly no expert when it comes to thyroid diseases but have learned so much since joining this forum - here I at least feel amongst friends and people who have had significant problems or else have overcome them and are trying to help others. It's all so very sad but keep believing in yourself as the truth will out in the end.👍

shaws profile image
shawsAdministrator in reply to Delgor

Dr Skinner and Dr Peatfield were taught about symptoms of different diseases and especially about dysfunctional thyroid glands and how to resolve the clinical symptoms.

These two doctors were pursued like 'criminals' because they treated patients as taught and prescribed either NDTs (natural dessicated thyroid hormones) now withdrawn by the Big Wigs who decide what should or should not be prescribed.

Dr Peatfield withdrew his licence but he was still able to assist those who had private consultations with him

I had a comment from a doctor who said that T3 converted to T4! No wonder our hearts drop when we realise the expert isn't an expert at all.

Delgor profile image
Delgor in reply to shaws

Gone forever and still sorely missed! 😢

shaws profile image
shawsAdministrator

Dr John Lowe (now deceased caused by an accident) was a researcher/expert/doctor for Thyroiduk before his death caused by a brain bleed due to a bad fall. He took T3 and would never prescribe levothyroxine for patients - usually it was NDT (natural dessicated thyroid hormones) or T3.

google.com/search?client=fi...

birkie profile image
birkie in reply to shaws

Hi Shaw's💓

It's becoming a real heartache now, my surgery keep doing the same thing expecting a different out come🤦 I must say I never got on with T4 not even the lactose free ones, this last T3 scrip seems to be ok so far but I'm only on 20mg and fearful of an increase due to gut issues ,seems the more I take the worse my gut issues become 🤷 I pray this doesn't happen 🙏...I've seen a parathyroid surgeon (private) who as identified a 7mm nodule on the left side of my neck, the very place the throbbing pain is..and as confirmed I have a parathyroid problem, just waiting for him to arrange a pet chlorine scan at Liverpool so I've got a double whammy at the mo🙄🙄

shaws profile image
shawsAdministrator in reply to birkie

You are definitely a poor soul at present as you are being deluged with different symptoms and your head must be spinning as the majority of us have no clue what different symptoms mean or we don't even get a doctor who is aware of symptoms we could develop.

We've no doctors who can resolve our worries at present i.e. like Dr Gordon Skinner, Dr Barry Peatfield did. Both very fortunate to had been trained upon clinical symptom and their knowledge of NDTs and T3 and T4s) . I was fortunate to have seen both who were knowledgeabler and kind and had patients consulting with them from all over the UK.

Lorraine Cleaver found this forum and I knew Dr Skinner had a practice near to her home as I also knew the area she mentioned and from then on:-

dailyrecord.co.uk/news/real...

birkie profile image
birkie in reply to shaws

Got to say Shaw's it's a very different experience going private, the surgeon actually took the time to read my file looking at all previous blood work for parathyroid, calcium, looking at my diagnosis of ostiopein in spine, left thigh, kidney stones, calcified tendonitis, calcification in most joints and heart.He was so lovely and made me feel at ease he as recommended I leave my current surgery so I'm looking into that now👍👍

humanbean profile image
humanbean

I don't know if this will be remotely helpful but if you have to divide capsules with powder in into multiple doses you might find empty capsules useful. Search for "empty capsules" or "empty gelatine capsules" or "empty vegetarian capsules" on Amazon. They aren't hugely expensive.

They come in different sizes, although I don't know how you would decide which size was most suitable for you.

Hookie01 profile image
Hookie01

Have you tried Aristo T4? I am on those as they are lactose free and currently waiting for Roma T3 from the hospital pharmacy, she ordered them last Friday! I find you do need to give your body a good month or so to get used to med changes. I nearly gave up on Aristo when first started them, but I think you have all the fillers from your old meds and the new all mixed together, got to give them time to get out your system properly I guess.

BB001 profile image
BB001

I have found out that the following wholesalers are supplied by Roma Pharmaceuticals:Phoenix

Alliance

Maudessley

Lexon

You are more likely to have success with Independent pharmacies being able to obtain Roma liothyronine, as they usually deal with several wholesalers.

I rang round my local independent pharmacies and asked which wholesalers they deal with. This is a quick and easy question for them and you'll get an immediate answer. When you find a pharmacy that deals will a couple of the above wholesalers, then it's worth asking 'can you get Roma liothyronine 10mcg capsules?'

I've pulled a Roma liothyronine capsule apart and would not recommend trying to split the contents as they are like flour/ talcum powder. Virtually impossible to divide up - and I'm well used to splitting Thyro-Gold capsules and using microgram scales

What you could do is dissolve it in say 10ml of water and use a syringe to scoop it up, then take half and put the syringe containing the rest in the fridge to use later. A Calpol syringe would work.

ScotPoodle profile image
ScotPoodle

I suggest you buy T3 privately and get yourself tested through Monitor my Health who are an NHS lab. You can message me privately if you want.

Mothebear profile image
Mothebear

hello 

You may not want to read all the following, but it does work for me. 

I have recently been prescribed the Roma T3 brand. It is interesting they say ‘hard capsule’, given they are water soluble translucent capsules. 

Yes, they are possible to halve.

Be aware you will look like a serious ‘druggie’ while you do it. . Tap the capsules top and tail several times on the table to loosen the powder content.. For the first one only, do this at a time you want to take your T3 (you will see why later!). lift off ‘the lid’ and over a very clean piece of paper or cloth, halve the white powder - you need a very steady, dry hand - tipping half the content into the lid.

This needs a bit of juggling and you have to compare the powder in the lid with the other half in the bottom part of the capsule…. Again gently tap both halves on the table. . You can then tip the contents of the lid into your mouth…it is tasteless but do drink some water - try to tap the lid on a tooth not tongue as you want to keep lid dry (it will collapse if wet!)..

Once emptied put the capsule lid on the other half which is your next dose now ready for when you next take your dose..

So for your second dose, empty the second half of the first capsule into your mouth as before….keep the capsule..

Now you should have an empty capsule. Repeat this on day two but when you halve your second capsule you can use the longer half of your empty (first) capsule to tip your second capsule into. .

If you keep your empty capsule, after a week you have 7 empty capsules and so you can split 7 more capsules so you can do a week at a time..

A couple of points: do tap the capsules several times before you try to split as the carrier starch tends to stick to the capsule surfaces. . If you spill some don’t panic - it can be your dose for that day 🤣🤣.

If you look very carefully you will see in the powder very, very small beads, these are the Liothronine and so your meds. If you slide your capsule along the surface, they very readily slip in to the capsule, so again, don’t panic..

Finally, you do need a steady hand, clean dry hands, and if you get the starch on your fingers it makes it harder to hold the capsule as the starch on your fingers let them slide.

Don’t give up, the benefits of this medication are terrific. 

All the best.

rick2525 profile image
rick2525 in reply to Mothebear

Hi Mothebear. Your explanation here resembles Einsteins splitting of the atom🤣. I was thoroughly entertained reading it.

Jazzw profile image
Jazzw in reply to rick2525

I know, it was brilliant Mothebear 🙂

And somehow tragic at the same time, that we’re having to share such tips with each other.

Joh001 profile image
Joh001

Hi I am up in Scotland and was on Mercury Pharma T3 tablets which worked great for me for the last 6 years. A few months ago I was changed to Roma capsules and I don’t seem to be doing as well on them a lot of the old symptoms have returned. I also don’t like the fact the capsule has Titanium Dioxide in it. I spoke to my local chemist and a couple of other chemists who told me I am not the first person who doesn’t seem to be doing as well on them but the tablet form is still available and is dearer around £30. I am going back to see my gp as suggested then if no joy the endo I saw or even my local MP. Sad we have to be advocates of our own health, it is a constant battle we are having to fight!

rick2525 profile image
rick2525 in reply to Joh001

Your absolutely right. It's all about the money. In GP practices the Pharmacist rules!! A GP puts the prescription through and then the pharmacist has the job of finding the cheapest way of fulfilling that prescription. They are the ones who look at the which companys charge what price for drugs.....not the doctors. The battle us to persuade the Dr to put on the prescription why a certain tablet does not agree with you. I've had this battle and discussion 2 year ago over Teva brand

K1V1 profile image
K1V1

I am not surprised to read through your struggle for T3.

Only if government allows me to import this medicine in UK, I am willing to go to Turkey or any other countries where these are freely available at a price of £2-£5 for 100 tablets. And will sell them at very reasonable cost so that all thyroid patients can live healthy & peaceful life, which is our right.

I have been lucky for the past 10 years to obtain them from abroad, & has been complaining to my MP to raise this issue in parliament but have not any progress up to now.

Good luck & stay healthy.

birkie profile image
birkie in reply to K1V1

Hi k1V1💓

Big pharma rule.....it's madness to think you can obtain this medication cheeper in other countries and yet we are ruled by our GPs / endos😠 one endo recently told me when I was again finding it hard to obtain T3 ..did I know diabetic patients are also finding it hard to obtain there insulin 🤦 I then said "well the NHS should be thoroughly ashamed to admit that" this medication whether it be thyroid hormones or insulin is ment to keep us alive!! ..I can only say the look on the endos face ended the appointment for me she was actually a diabetic specialist first and a thyroid specialist last..😔

BB001 profile image
BB001

Try complaining to healthwatch

K1V1 profile image
K1V1 in reply to BB001

Have already done several times. Not even reply of email. Corrupt government department following corrupt Ministers.

If you want to live healthy, take matters in your own hands, & find treatments, medicine available easily & cheaper in so called third world countries eg. Thailand, Indonesia, Malaysia, China, India etc

birkie profile image
birkie in reply to K1V1

Hi

Can I just tell you a thing that happened to me through these last years after my thyroidectomy in 2019, I've struggled with the thyroid meds since thyroidectomy T4, T3 teva I'm lactose intolerant and have colitis so I always seem to get real bad gut issues 😔 but I was first put on teva T3 in late December 2019,..after increasing I started again with gut issues (MANITOLL filler) but I was presenting with some hyper symptoms also, I was on 30mg T3 at this point my bloods didn't show over medicated, but did show my calcium was very over range, up shot my parathyroid hormones were also over range (primary hyperparathiyroidism) for which 2 endos wrote and said I probably had this condition, but the endo quizzed me on my T3 medication, like where did I obtain it from🤔 I told the endo from you!! She then said are you sure your not taking any other thyroid meds from let's say a foreign country? because you should definitely not source any thyroid meds from these countries as they can be cut with other drugs, I can honestly say I've never sourced any thyroid drugs from any other countries as I can't afford them, she was obviously trying to play down the symptoms as not being a parathyroid problem blaming me for sourcing drugs from abroad, when in actual fact the para surgeon I saw in Nov(privately) found a 7mm nodule in my neck saying I have a parathyroid problem 🤔 she was attempting to scare the life out of me with the thyroid drugs thing from abroad, i think they know they are much cheaper than here and won't want people sourcing their own, big phama would not be pleased 😠

BB001 profile image
BB001 in reply to K1V1

Have you tried phoning healthwatch? I'm wondering whether your emails got through to them.

birkie profile image
birkie in reply to BB001

Hi

Well if the emails got lost i would have thought the letters would have got to her as she should physically need to open them🤦‍♀️ even not responding to a private surgeons letter tells me all I need to know about this surgery 😠 my surgeon as written a report on my ultrasound scan I got the proof read e mail over 9 days ago and still they are saying no letter as arrived from the private surgeon, I'm contacting his secretary tomorrow to check if it as been sent yet.. Can I ask.. What is healthwatch? ❤️

BB001 profile image
BB001 in reply to birkie

I think we're talking about different things. I was talking about the emails to healthwatch not getting through.

You may also like...