Hi there, nearly 2 years ago I had my thyroid surgically removed and put on 100 mg; a dose that seems to work for me.
The point is, I was only allowed 28 tablets at a time, my partner, who also takes thyroxine is prescribed 84! (He is registered at a difference surgery in the next Borough. For reference, he is Ealing and I am Hounslow.
Every 28 days I had to traipse to the chemist and pick them up- holiday time can be complicated. No spontaneity allowed unless I have tablets.
I spoke to my GP about increasing and she said no way and a way around was to have them sent by post? how does this help? - I still had to be near home to have retrieve them- I felt trapped. I tolerated it for over a year and spoke to others who were allowed 84 tablets. I found my allowance restrictive and my pharmacist felt it stupid as it cost the NHS more that way. I wrote to the Practice Manager with my complaint and immediately my doctor called me. We had a debate (loads of reasons and excuses why they couldn’t allow me more) and she said that she would put my allowance up to 56 but that was the best that she could do and basically never to expect anymore. That was about 6 months ago and since then I have met others on 84.
Anyone know the reasoning behind this and why I have to fight for my thyroxine allowance to be increase when my partner who still has a thyroid gland can collect his prescription 84 at a time- I feel tied to my pharmacy and my home and would like an element of freedom and not have my GP practice dictate my life.
I would appreciate any comments on this and what my next step to be.
Thank you x
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Hi Treepie, nice idea however I would have to change my address ie. move to that area with an address in that Borough. When you register they want the post code etc. I think it’s almost a postcode lottery:-(. Thank you for your reply x
Years ago my surgery used to prescribe 84. It's a few years now since it was changed to 28 at a time. For any regular medication on repeat prescription, whatever it is, they only ever prescibe for 4 weeks at a time.
Hi SeasideSusie, thank you for your reply. Interesting. Thank goodness it’s not just me. Getting it up to 56 was a real breakthrough. Just sits uncomfortably when it’s not a national standard. Met someone from Luton last week who said that she gets the 84. Just wrankles.
I think I’m probably stuck on 56 but it is certainly better than 28. They seem to go so fast when you’re taking them. Had a trip to Lanzarote earlier this year and had a bit of a performance to get them earlier.
Totally grateful for NHS but structure a little skewed.
I think it's a control thing. Some doctors just like controlling you. What excuses did she give you?
Here, in France, my specialist in Paris would write me a prescription for three months, but the pharmacies in my home town would only give me one month at a time. I questioned this at the pharmacy and 'La Dinde' - as I called her, because she looked like a turkey - shook her wattle at me and read the riot act at me, like a naughty child. How dare I want more than I was allowed! Didn't I know I couldn't be trusted to have more tablets than she decided I could have?
Hi there GreyGoose, thank you for your reply. That’s exactly how it feels, as though I’m being controlled and said that it my email to the Practice Manager. I asked for sound justification for why they were doing it and why it was different for others and if their reply was unreasonable and not logical that I would take it further. Then the doctor called!
Her excuses were that they have patients that lose them or abuse them and I said that she known me for several years and discussed my reliability. It was BS basically. She then talked about the practice being judged and watched and setting a standard, she said that my partner’s practice was in the wrong for offering that amount. It’s just that when you meet others that are receiving the 84 it feels like they’re giving you the brush off.
She writes a prescription for 6 months but dictates that the pharmacy only gives me the amount she wants or. 28 or 56, I know this because once I asked them to give the 6 months as per the prescription and they said no. So I’m not sure about France.
Exactly! That’s exactly how they made me feel, like a naughty child that needed controlling, or a the very least an untrustworthy, unreliable adult. Gone are the days when you can pack a bag and say I’m off to travel the world- as long as you are back within your doctors allotted time to pick up your tablets!
Is it possible to self treat? I told them that I would rather pay than have them dictate my life. It’s like been on a leash.
Yes, it is possible to self-treat, but takes a certain dedication. Finding sources of thyroid hormone isn't always easy because sites close down and new sites appear - although not that often. Paying is sometimes a problem because you can't use your bank card. And, then, there's the testing. Your doctor may cooperate and continue testing your levels, but probably won't, so you have to pay for private testing. It can be complicated, but at least you feel free! And to be free of the pharmacy is a wonderful feeling for me. It got to such a point with La Dinde that I vowed I would never go in there again! I could tell you some stories… And, after the last big row, I had to get my son-in-law to go get my prescriptions. But, even that wasn't trouble-free. So, all in all, I prefer things as they are now.
Well done you. I can only imagine my doctor’s face if I approached her about self treating. That feeling free is priceless, but there’s a different price to pay I suspect; will certainly take a look at it for sanity sake.
Love and appreciate the NHS and would never take for granted and totally respect, but not everyone treats it the same which is sad. Also, GP’s should play by same book because only leads to confusion and situations such as this no matter your illness and there are many in greater need.
If your doctor cannot, or will not, treat you correctly, she should expect you to take matters into your own hands. Why should you accept such bad treatment and being kept ill? Why should anyone, when they can treat themselves much, much better. It just seems logical to me: you won't give me what I need, so I will take it for myself.
I wonder what your doctor would say if, as I explained last year to my doctor, that you are going on a 55 days cruise, which, plus end and beginning plane trips, would be over 60 days. Wonder what her answer would be? Would she suggest it's too long to be away? (that might be sarcasm on my part).
Unfortunately here in the US, we have an insurance system instead of a medical health system. Pharmacies are happy to fill scripts for 90 and even 120 days with reduced prices. Let's not discuss those inequities about pricing either..
Exactly, I’d have to get her(My doctor’s) blessing to be able to do any of that. Spontaneity has no place in this. Money always a game changer. Human welfare never a priority. I did ask her once ‘what if I wanted to go away for several months’ she laughed at me as if I were playing a game with her and said that we would basically ‘cross that bridge’ if it ever happened.
I'm guessing you're in the UK like me, I was only getting one month at a time so this is what I did.
When I next saw the doctor I asked for 3 monthly prescriptions and was asked why I wanted them so I said....
Why would the cash strapped NHS prefer to have a doctor sign off a prescription 12 times in a year instead of 4 times a year, can't be cost effective in either time or money , next I asked why would the surgery pay to have a prescription dispensed by the pharmacy 12 times a years incurring 12 payments instead of 4 times a year...I also added that if I was like my mother who is on levothyroxine in another area why would the surgery pay to have my medication delivered 12 times a year as opposed to 4 times a year, those arguments seemed to work and I have been getting 3 monthly prescriptions for a while now.
Maybe you could try those arguments, since everyone is constantly going on about saving money in the NHS.
About 15 years ago I used to get 84 tablets Levo prescription from GP. I worked as a pharmacy dispensary assistant and the pharmacist was not very happy at people on long term medication getting 3 months at a time - why? - because he got paid for every item he dispensed. So, 84 tablets is 1 item, 1 payment every 3 months. 28 tablets a month is 1 payment a month. He used to go over to the Doctors surgery and complain all the time so eventually they lowered it to 56 and now they want to do 28. I have got them to give me 56 as makes no sense to collect my prescription every 4 weeks. It's probably all to do with pharmacists complaining about their drop in income.
May have a point there but it also means the pharmacist has to work for you more often! I self medicate so the only prescription I get is for Letrozole as I’ve had breast cancer. That had to be collected ever four weeks. Two years ago I had a badly broken wrist so couldn’t drive so I had to go on the bus to collect. It’s not far from home but takes two buses so I made a comment once when they asked me to come back later that I would wait and explained about the bus. Helpfully they pushed me up the queue and offered to deliver in future and to stay that way even though now mobile. Last 6 months or so surgery is now ordering 3 months at a time, so even better but not sure if that’s because they are contributing to the delivery or not but recently heard any one of any age with or without other issues can have meds delivered!
Hi Silverfox7 - well, as the person who did the prescriptions myself, took the items from the shelf, printed the patients labels etc... showed the meds to pharmacist before I gave them out, I can tell you that it's a 5 minute job whether I take 3 boxes of 28 or 1 box of 28 from the shelf in the dispensary. Don't forget, the pharmacist is receiving a salary from the NHS plus a dispensing fee for every item given over the counter plus the mark up on the medicines they buy in and then charge the NHS for. It's not really the people who are only getting one item monthly/2 monthly where the loss of income comes into play, it's the patients walking out with 2 large carrier bags every month - now they are worth £££££££££££'s . Sorry, as you can see, I'm just a bit cynical 😁
You sound a bit more or rather a lot more organised than my pharmacy! A few months ago mine weren’t delivered so I went up to collect them and found I had been given something I hadn’t asked for. I wastold that it was a repeat prescription so I couldn’t just be given one part of it but I didn’t need it as I don’t run out of them both at the same time. This caused problems for around three months and I kept having extra slipped inside was often taking something back! I was getting medication that wasn’t even ordered! I checked with the surgery as I was worried they were being charged for this but they assured me they only paid for the prescription requested by the doctor on the official form! I then called into the pharmacy for something completely different and was given a bag of stuff, again not ordered so I refused it then got home to find the delivery man standing on my drive with yet another bag! I must say the girls in the pharmacy looked so young but at the time put that down to me being ancient but for a long time they have only had locum pharmacists hence me saying how organised you are! Thankfully when our practise manager returned from holiday it was sorted out and the last few months I got what I ordered!
Wow - how bad is that. Considering we are constantly being advised not to order medicines we don't need? I have to say that is one of the biggest wastes of money in the NHS. When people pass away and someone brings all their medicines back to the pharmacy - it would amaze you. Boxes and boxes of unopened tablets - all go in the burns bin. Can't be given out again for another prescription. Absolute waste of money. My mum was one of the culprits 😕.
Yes I was furious. I must admit I usually order a month early but only because I can’t get out if the weather is bad and I presume the delivery service would have similar issues plus I can’t trust them now. There is a nearer pharmacy to me but difficult to park and a steep hill if I don’t and the plus point of my present one is easier parking. I must have a look in sometime and see what if anymore staff changes. The staff previously were very good but can’t have been easy with the frequent changes of pharmacists but when it got as ludicrous as I’ve described you can’t help but wonder what is going on! I even told them I was keeping the extra so wouldn’t order it on the next one but it still turned up! It really looked like the entire staff had walked out but as I had no need to keep popping in we shall never know!
Seems the left hand doesn't know what the right hand is doing? Maybe next time your due to order your meds, remind them of what you need - I understand though that it's a godsend getting it delivered to your door. The pharmacy my mum used did this for her when she became ill, they took so much pressure off me every month - they were angels.
The surgery sent a script to the Pharmacy so in theory it’s fool prove plus they are supposed to check it against the card though they don’t as when on Levo and that was in their notes they produced another brand. I took it back and said it wanted the brand I had so I was told I hadn’t inftmed them so I muttered I thought it had, so she checked then called the girl over who had done the other and showed her where it was written and then begrudging said to me that they would change it-no admission or apology either!
Worrying isn't it? I sometimes think I must be invisible since retiring - I'm definately invisible to the GP when I go for my blood results for my thyroid - got to laugh or you'd cry.
Very. With all respect, I think that when you retire you almost are looked upon as a non participant in the important fabric of society, like you aren’t an influencer anymore which is absolute rubbish. You’re not invisible, I hear you and you have an important key role offer to people, experience and knowledge, plus many other things that it would take an age to list out. X
Hi DoeStewart, another interesting angle. I asked the pharmacist about this and all claimed it was the doctor’s decision and nothing to do with them. One said he couldn’t understand why the doctor did this because it wasn’t cost effective for anyone involved.
Really, there needs to be open clarity on this not only for patient welfare but for the welfare of the NHS.
The trouble is, the NHS.is being run like a business, I'm afraid the patient is at the back of the queue. I remember when my eldest son was a toddler, all of a sudden the GP surgery were inviting me to take him to one of their asthma clinics ? Only for the fact that I worked in the pharmacy and knew that every Friday lunchtime the pharmaceutical reps would go in the GP surgery with lunches for all the GP's from M &S and get them to prescribe certain medications and pay the surgery for how much they prescribed- I declined their offer . Over the next month's I have never dispensed so many asthma inhalers?? That's how it works unfortunately
The MHRA report on levothyroxine recommends three-month prescribing. When I asked for that (as a new patient at a new surgery) the doctor very much implied that the pharmacists wouldn't like it - she gave me two months.
Levothyroxine Tablet Products: A Review of Clinical & Quality
Considerations
07 January 2013
9. Levothyroxine should be prescribed and dispensed in quantities covering three months supply, where appropriate, in order to address issues of continuity of supply and also to improve convenience to patients.
Hi helvella, it’s a pity that it’s a recommendation and not a rule, but I think it is one that should be adhered to for the reasons shown. NHS is complex and already in a mess without GPs and/ or Pharmacists manipulating process to suit themselves and line their pockets. Makes me so angry. Prescription protocols should be put in place and adhered to for the sake of our NHS and all patients, otherwise it causes confusion and anxiety for all!
Hi JaneyJaney, I am not 100% sure if it works and I’m on the right dose. Thing is I’m now off Carbimozole after having Graves Disease and Thyroid eye disease and I feel much better than I did when on those with hyperthyroidism . Currently have joint pain but not sure if to do with this or menopause.
GP playing hardball now re. Prescription but want all to be on equal playing field.
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