Irritated by surgery, your advice please? - Thyroid UK

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Irritated by surgery, your advice please?

thyr01d profile image
12 Replies

This is trivial compared with some of the problems we experience but it's bothering me and I don't know what to do. I moved to a new house and new surgery in April. In August I saw a new Endo who suggested I change from T3 only to T3 and T4, which is great, just what I wanted. He said to introduce the Levo and reduce the T3 to, at first, 10 mcg am, 10 noon and 10 pm, then, reduce to 10-10-5 then to 10-5-5 and eventually to 5-5-5 and to be seen again in 6 weeks time.

Sounds simple yes?

But since August I have been struggling with the surgery not following the endo's advice when prescribing because the letter from his said that he recommended I reduce that way but didn't actually instruct the surgery. I went back to the endo via secretaries for an email to the GP confirming, then another email. Meanwhile the endo (who was a locum) left and another consultant messaged the surgery confirming that he agreed with what I was saying I needed to do. Still the wrong prescription is being issued, 3 months on. I have spoken to the dispensary many times and emailed the surgery politely. It's not putting me at any risk, I'm just ending up with boxes and boxes of 10 mcg of Liothyronine, but I have to re-order every 2 weeks and it's annoying.

What do I do now since polite requests are not working, I don't really want to threaten so wold really appreciate advice?

Thanks in advance, I know some of you will have good ideas.

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thyr01d
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12 Replies
SlowDragon profile image
SlowDragonAdministrator

can you cut 10mcg in half to get 5mcg

thyr01d profile image
thyr01d in reply toSlowDragon

No unfortunately, they are capsules with powder inside, too small an amount for me to separate.

SlowDragon profile image
SlowDragonAdministrator in reply tothyr01d

That’s annoying

You need prescription to state 5mcg capsules

price comparison of tablets to capsules

healthunlocked.com/thyroidu...

thyr01d profile image
thyr01d in reply toSlowDragon

Hallo again, yes, that's the problem I am hoping for a solution to, how do I get the surgery to write the prescription correctly? They write it as if I am taking 5 mcg once a day and 10 mcg twice a day when it needs to be the other way round.

RockyPath profile image
RockyPath

I wouldn't turn down liothyronine. What the endo has suggested might not work and you could have an extended fight to get it back.

Endocrinologists who don't want to prescribe T3 are as common as pigeons in public parks. They are as difficult to deter as ants at a picnic.

There are some very good pill cutters on Amazon.

thyr01d profile image
thyr01d in reply toRockyPath

Don't worry RockyPath, I have been on T3 for years but without T4, I now still have some T3 but less and more T4. That's not my problem. I have an excellent (from the hospital) pill cutter but these are capsules, as explained above.

serenfach profile image
serenfach

One suggestion is to look up what is in the capsules (fillers) and what is in the tablets, see the difference and decide you are allergic to one of them in the capsules. They would have to take notice of that!

One way to split a capsule it to tip the contents on to a sheet of paper with a fold line in the middle, Split the powder in half (a credit card apparently works quite well), mix one half with a small spoon of jam, and take that. Funnel the other half into a dry container, or even the capsule if you have a steady hand.

Yes, you should not have to! The chemist should be giving you the prescription as it is written, so if it says Lio tabs, that is what they should give you, and you could tell them you cannot take capsules (your throat is narrow due to the thyroid...), so in order not to be able to take the capsules and therefore get ill, would they please give you what is on the prescription.

Life seems to be a series of struggles, all caused by someone else, so good luck!

thyr01d profile image
thyr01d in reply toserenfach

Thanks for your reply Serenfach. The chemist is great, very helpful, my problem is that the surgery will not write the correct prescription. If I say I am allergic to anything or can't take the tablets I will still be given the wrong amounts just in a different form so I would rather find a way to persuade the surgery to correct their prescriptions.

Catseyes235 profile image
Catseyes235

interesting …I said to my Endo I was worried if I went into hospital they wouldn’t know I took T3 as GO surgery won’t pay for it but hospital does. Sure enough I went to have a knee replacement at a different hospital but had told them in pre op what drugs I take. Anyway brought in my own T3 but noticed the hospital had put the wrong dosage on the label! I take 5mcg divided into 2.5 mcg morning and evening. They’d put 5mcg twice daily which I had to argue with the nurses that I’d have palpitations on that dose and had been taking what I said for at least 2 years! Phew ..nowt ‘s straightforward.

Have also ended up with loads of T3 which I’ll get through …slowly.! Have yet to inform Endo and hospital pharmacy of their mistake. Got an appointment next week so may tell them the ‘good news’ then . Right now I’m just looking forward to pain free walking!

I suggest you email Endo department to get it sorted as they instruct pharmacy which is what I’ll do. BTW I get 6 months supply of T3 now!!

thyr01d profile image
thyr01d in reply toCatseyes235

Hi Catseyes, thank goodness you knew what you were taking and were awake enough to sort out the mistake. I hope your knee is much better once fully healed. I have emailed the Endo department who instruct the surgery and the Endo has emailed the surgery twice. Oddly I was thinking while wakeful last night about what would happen if I ended up unconscious in hospital - luckily that's so unlikely I won't worry about it. Well done for getting 6 months supply, I used to receive 3 months so will now aim for 6!

I think my problem is because I've moved from the Midlands to the south so am new (since April) to both the surgery the Endo team and both my allocated GP and the Consultant who saw me are locums, the Consultant having now left. You have prompted a thought, my previous Endo team told me if any time I wished to return to their care to just let them know and they would take over again.

Catseyes235 profile image
Catseyes235 in reply tothyr01d

Nowt’s ever easy is it!? sometimes I can’t believe how little things have changed since my battles with docs in the 70’s. Still reading of people being dismissed/ not listened to etc etc and it’s all been compounded by NICE insisting that TSH tests alone were adequate and the ridiculous rise in costs of T3 to the NHS!

Funnily enough I’ve thought of moving North but when you’ve got a good Endo, good Eye Unit ( for my macular) and one of the best centres for knee replacement close by I think I’ll stop here!!

Knees recovering well after initial pain hell and down to a couple of painkillers a day! When that’s settled I’ll have the other done then back to more volunteering and walks with bird clubs ..can’t wait! Good luck for the future !

thyr01d profile image
thyr01d

Thanks Catseyes, and btw, you would have good access to a good Endo, an excellent Eye unit and brilliant knee replacements if you do decide to move North, if you live near Hereford/Worcester. That's where I moved from. Good luck to you too!

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