Just letting off a little steam.....

[nickym1]

And so the fun begins........

First prescription request from hospital to GP surgery for long-term T3 meds, and Dr phones me to suggest I get hospital to honour prescription as they are "fancy" drugs and what are considered "non essential". Why did I need "fancy" ones when there were better alternatives. I explained about the thyroidectomy, and wait for RAI, and managed to secure a short term supply for now, but she's asked me to collect the hospital form - so presumably won't honour it long term.

To add insult to injury, after initially being told that she would need to get the request authorised which might take a few days, I explained that I run out of tablets today - her response was, it won't make much difference if you are without your meds for a few days!

I spent the first 3 weeks under medicated, last two days over medicated, now Dr suggests I don't medicate at all!

What a state of affairs!

Apologies for the rant.

That is all.

[Hidden]

That is really awful. I am so sorry. It is nothing else left as to go back to your surgery or even write to your GP that you are feeling really unwell and that you feel that your health is in a serious jeopardy so you cannot continue to be without your medications. Sometimes putting things in writing scares them a little.

I hope that you will manage to get this sorted.

BW

Exxx

[nickym1 in reply to Hidden]

Thanks for your suggestions Edysia. I did manage to secure a short term script by the end of our conversation - thank goodness, but it was hard work. I just wanted to moan about the conversation I had to have before doc agreed to sign on the line for my medication (if only in the short term). My hasband is very cross, and has phoned the surgery for the name of the practice manager this morning so we can complain in writing. It does seem a little 'off' that my oncologist can prescribe a medication, and GP suggests that it's fancy and non essential!

I hope that you are alright? I read Tony's comments (yesterday I think), and have been thinking of you too.

Best wishes Edysia x

[Hidden in reply to nickym1]

That's really good Nicky. I am glad that you have it now. I do not have a husband or partner and surgery refuses to speak to my friend Tony. Stupid people!. I am in the lowest now so I am not having energy to fight for another batch of tests. Things are getting weird with my medication Erfa. I do experience setback and my symptoms are getting worse. I am lost and not quite sure what to do but I will probably increase the dose. It is to early to resign ( 17 days on ERFA, currently on 3/4 of a grain).

Thank you for thinking of me. That's nice

Wish you all the best.

E xxx

[helvella]

You could ask a pharmacy if they would be willing to "loan" you a few tablets.

Granted it is unlikely they will have T3 in stock, but it is not impossible. And they are allowed to do that in such situations - but take whatever you have that proves you have been/will be prescribed it so they can satisfy themselves it is a proper request.

[nickym1 in reply to helvella]

Well, I did in fact phone the pharmacy opposite my Dr surgery to check stock. The very helpful lady told me she could have my prescription ordered, and delivered this morning, and ready for collection by 12pm today. She even phoned surgery to check details, and said she would pop over and collect it herself to save me the journey.

I'm sorry, I should have added this important info, I was just super annoyed at the doc, and needed a little rant about that.

Thanks so much for always responding with something useful. It's very much appreciated. Have a good day yourself

[helvella in reply to nickym1]

I don't blame you!

And someone else might find the concept of pharmacy loans new to them and useful.

[nickym1 in reply to helvella]

I agree! I'd never heard of that before? They certainly don't advertise that service. I can see that it would be immensely useful in desperate circumstances. Thanks for the info.

[shellybelly_71]

Hi, what amount have they put you on now? I know you had said you were only on 20mcg before. I had an issue when I was put on them after my RAI. I was given maybe a weeks worth from the hospital then handed in the letter to the surgery, I also took my letter to the chemist to show our lovely pharmacist.Once I got my prescription from the doc I handed it to the pharmacist, and of course it was wrong, she had put down for 5mcg tabs. So the pharmacist sorted it out for me, he said it would have cost more money for the 5s than the 20s. My old GP who has now retired couldn't understand why I had been put on the Lythyronine, so had to explain that one, and again to the new GP who took over. Your hospital doctor or oncologist will be in charge of your medication. My oncologist said to stay away from the gp lol. I dont think you will be on T3 long term thou, but at least 6 months to a year when levothyroxine 200mcg, Thats 7 dyas today and apart from having this dreaded lurgey and being on antibiotics I do feel much better. If you have any hassle get on to the hospital, they will soon sort out your GP. Keep well

Shell x

[nickym1 in reply to shellybelly_71]

Hey Shell,

A bit of a saga really. After second op I was sent home and told to take 20mcg per day. I saw my oncologist on Mon who told me to up that to 60mcg per day, which I did. Tues - no effect at all. Wednesday, trembling, anxious, terrible headache, body tense like a board, heart rate up etc, etc. I now know I should have upped it gradually, but this wasn't suggested by oncologist. I'm not an expert - just do as I'm told. So I'm now taking 20mcg twice a day and we'll see how it goes.

A different GP is going to speak to an endo for advice, as I don't have any follow up appointments until RAI. I am going to post my latest blood results in a mo, which are completely out of range.

Hope you're well? Great news about your clear scan.xx

[nickym1 in reply to nickym1]

Sorry, just read again and you have the lurgy..... Hope you shake it off soon! X

[shellybelly_71 in reply to nickym1]

I didnt feel to bad on the 20mcg 3 x a day, but today for about an hour as I got up to make my lunch I felt all a bit shaky. Its more or less passes now, what a weird feeling. Dr said if I had anxious and shaky feelings to cut it back to 150mcg of thyroxine, Glad it only lasted about a hour thou. So think I will just stick with the 200mcg and hope it doesn't happen again. Yeah the dreaded lurgy, everyone seems to have it. My throat is raw. The joys eh lol.

I think your doing the right thing, I struggled at first with how to space it out, I ended up with as soon as I woke in the morning, which can be anywhere from 7am to 10am, then again about 4pm then right at bed, usually about midnight. Its really hard to cut the pill, I think you would need a cutter if you went down that road. I would say to make sure you get up to the 3 a day cos the 2 weeks prior to the RAI you will feel rotten, so if you are not fully medicated you will feel it worse. I was on thyroxine for 4 weeks before my RAI and came off it for just 2 weeks before, should have been 4 but Dr said I was showing hypo signs anyway. To be honest I didnt feel that bad then but when I came off the lithyronine for the follow up scan I felt that harder.

shell x

[Maddie]

In case you don't know, T3 is listed in the BNF - British National Formulary. GP's use this for prescribing meds. T3 is in no way a fancy drug and it may be worthwhile letting her know that she can find the infomation on T3 in the BNF.

You can get this info yourself, it's free to register, then put liothyronine in the search.

bnf.org/bnf/index.htm