Gp... Seems OK to leave me under medicated 🤦‍♀️

[birkie]

Hi everyone ❤️

Just got off the phone with our GPS receptionist this is the second day trying to speak to a gp😠😠 I tried explaining to her I really need to speak to a doctor about my last thyroid results (as I posted a few days ago I mixed my meds up, thought I was taking 20mg when in fact I was taking 5mg ,i had no 20s left but the boxes look the same... So instead of taking 25mg (20mg morning /5 evening I was only talking 10..5/5) bloods came back T3 under range at 3..gp stopped my 25mg and sent a box of 10mg one to be taken a day🙄🙄🙄🙄 I'm on 25mg for God's sake!!! What does he think will happen if I take 10mg per day? Does he think my T3 will suddenly jump from 3 to a better level.... Idiot!!

So receptionist says "but you have a phone appointment with the gp on may 23rd"... Yes I say but A, I'm on the wrong amount he as prescribed 10s, I take 25mg.. B, by the 23rd I'll have no medication left!!

Cutting this story short because I just couldn't get this through to the receptionist, she just kept saying "wait till the 23rd of may😠 and we have no appointments and you can't speak to a doctor today sorry!!

I asked for the practice managers phone number so I could relay this saga to he/her.. Receptionist" I'm sorry I can't put you through to practice manager all correspondence to manager is in writing only" WTH!! again I just couldn't let this go... I need to speak to someone as relaying this to you is no good because you can't understand what the problem is.

I then said "so is it OK for me to be under medicated and no doubt go hypo before I see the gp on may 23rd 😠 is that policy"!!! her.. "I'm not a medical professional" "exactly" I say "that's why I need to speak to someone who is" 😠 she as now given me a call bk with the prescription line manager to call me sometime today... I'm not holding my breath 😠😠😠 but I am however writing a letter to practice manager and making a complaint 😠😠😠 talk about stressed out.. And the doctors are there to help.... 🤯🤯🤯 Don't think so in my case 😢😢😢

[Hidden]

What a battle you're having! I don't think anyone properly understands the importance of thyroid medication. They don't get how being undermedicated affects us. Hope you get it sorted soon.

[Jazzw]

Do you think it would help to steer away from using the word undermedicated (even though that really ought to work) to

I. Don’t. Have. A. Thyroid.

And therefore, I can’t make this hormone. You will make me very ill.

You shouldn’t have to remind them, but would they leave a Type 1 diabetic without insulin? Would they leave someone with Addison’s disease without Cortisone? No they would not! So why do they think this is different?

It’s ignorance, plain and simple. I’d call and ask to speak to the practice manager. Edited it to add—sorry, just seen they’ve said you can’t!

Hmm I wonder if calling 111 would work? Everything’s worth a go…

[birkie in reply to Jazzw]

Hi jazzw❤️

Thank god we can come on here and vent our anger😠 thank you to everyone who's responded to my rantings🤦‍♀️

Jazzw I told the receptionist "I HAVE NO THYROID SO I CAN'T MAKE ANY HORMONE" THE ONLY WAY I CAN GET THIS HORMONE IS ORALLY " by the gp deferring my 25mg T3 and giving me 10mg one per day I'm being deprived of this hormone making me even more hypo by some gp who doesn't know the back story.. (I've been taking the wrong amount for around 8/10days..10mg instead of 25mg..didnt notice I'd run out of 20s and was using the 5s🤦‍♀️🤦‍♀️, it should be an easy fix... Speek to the gp... Relay the mix up.. Get the 25mg reinstalled and start again... Why is that so hard for this surgery to understand 🤷‍♀️ hell I can't even speak or see a gp to relay this to them.. I even asked if the receptionist could give any gp a message on this dilemma, but no!! I need an appointment for face to face or phone call .. But I can't get one😠😠 the term jobs worth comes to mind here🤦‍♀️ how the hell can you bypass the receptionist.. It's née impossible 😠😠😠😠

[Jazzw in reply to birkie]

And they wonder why people turn up at A&E instead of seeing their GP?

I take it you don’t have a decent MP? Vaguely remember us discussing it before. I think I’d absolutely make a fuss about it. Potentially even turn up at the surgery and refuse to leave until someone sees you and puts the doctor’s mistake right.

But that all takes energy that many of just don’t have…

Sending big hugs and wishing it could be T3 instead. x

[Watamu in reply to birkie]

Hi, I had a similar problem yesterday. Because I find it difficult to do a telephone call appointment when I'm stressed, I emailed the GP with a 'please deal with today if at all possible' heading. I did get a txt reply and have luckily sorted out my problem. Good Luck

[birkie in reply to Watamu]

We unfortunately don't have access to gps email's at the moment it's receptionist, I've tried to download the app it's just been set up.. But they didn't send a code threw I tried several times to no avail 🤦‍♀️ I'll give it another go, but it's just to make appointments and see results 🤷‍♀️

[SlowDragon Administrator]

Definitely put it in writing to practice manager and copy to GP

Remember to include that you are extremely lactose intolerant

[birkie in reply to SlowDragon]

Sorry for bothering you slowdragon, I'm writing to practice manager, can I clarify... Can a gp defer your thyroid medication leaving you on a minimal dose without talking to an endo first?Wonder if I can add that to the letter? 🤷‍♀️

[Lalatoot in reply to birkie]

T3 is endo only territory for changes to doses. The endo tells the GP what to prescribe and they need to consult with an endo before changing things.

[birkie in reply to Lalatoot]

Thanks Lalatoot❤️ thought that might apply, so I'm quite angry he as deferred my 25mg and put me on 10mg one to be taken each day 🙄 this without any consolation with an endo😠 I'm going to definitely mention this in my letter to the practice manager 👍

[Lalatoot in reply to birkie]

It shouldn't have to be a constant battle. Power to your pen, Birkie.

[birkie in reply to Lalatoot]

Ho... As soon as I've had that lie down in a dark room, my pen becomes my sword.. 🖋️🗡️🗡️🗡️ Just so sick of this incompetence at my surgery, thought this surgery were going to be better than my last one 🤦‍♀️.. Also a friend of mine who works in the next surgery over, told me they have to give you an appointment within 72 hours🤷‍♀️ don't know what happened to that, also they have to cut down on phone appointments and see patients face to face... What happened to that also.. 😠😠😠

[SlowDragon Administrator in reply to birkie]

Agree with  Lalatoot

Only endocrinologist can change dose T3

If on ONLY on T3 most people would be on at least 40mcg per day and often higher, most usually 60mcg per day

[birkie in reply to SlowDragon]

It's was fight to get an increase of 5mg slowdragon even when my TSH was 6.25🤦‍♀️ the gp was reluctant to do it saying he'd put a prescription in for 10mg..( the chemist couldn't get the 10s🤦‍♀️so gave me 20s) and he couldn't keep giving me prescriptions that weren't being filled🤷‍♀️🤷‍♀️🤷‍♀️ but said OK I'll put a prescription over for 5mg but only if the pharmacist can obtain it,.I had to go back to the chemist and ask if he could obtain the 5s he said..... Probably but just tell the gp I can, then I had to inform the surgery they could get the 5s..it took around 7 days to get them.

So if I manage to get my 25mg restored then do bloods if my TSH and T3 are just within range I'm positive I will not be allowed another increase 😢 just another stress I'll have to go through 🙄🙄🙄

[SlowDragon Administrator in reply to birkie]

You need a decent endocrinologist

Could you go private

On replacement thyroid hormones TSH should always be below 2

On T3 you would expect TSH to be extremely low or suppressed when adequately treated

[birkie in reply to SlowDragon]

This is weird, as I'm seeing a lady in Liverpool on June 22nd about the nodule found in my neck, hopefully she's going to put me forward for a pet chloride scan, but this is parathyroid related not thyroid, but she is an endo🤦‍♀️ way out of my area tho so probably won't be able to ask any questions about thyroid dosing ect😢 the new gp I saw as been fantastic she as arranged the 2 camera procedures and a full blood count.She also recommend I see an endocrinologist about my thyroid medication giving me gastro problems.

I hope she hasn't mixed up parathyroid and thyroid 🤷‍♀️ I'm not seeing her for thyroid meds it's for the nodule in my neck🤦‍♀️🤦‍♀️🤦‍♀️

[SlowDragon Administrator in reply to birkie]

Suggest you wait until seen this endocrinologist

Is she a parathyroid specialist?

List of thyroid specialists and endocrinologists 

Some are doing consultations on zoom

They would be appalled at your current situation and lack of regular prescription

healthunlocked.com/thyroidu...

[birkie in reply to SlowDragon]

Managed to speek to the endocrinologists secretary in Liverpool the appointment in June is for parathyroid only, that was the initial appointment.. Thank goodness 🙄 so in actual fact according to the new gp she should be sending me to an endo in relation to my thyroid medication as well as the endo in Liverpool 👍 but I'm going to clarify that as I just don't trust them😠

[SlowDragon Administrator in reply to birkie]

vast majority of endocrinologists are diabetes specialists and useless for thyroid

Check the list for NHS options near you

Typical wait is 9-12 months

Private consultation, little or no waiting and you can go where you like.

[birkie in reply to SlowDragon]

You know the more is see you mention a private consultation the more I'm leaning towards it slowdragon 👍 can't wait 9/12 months, I've been saving up for the trip to Liverpool (train fare) good thing is we can do it in one day so no need to get a hotel 🙌 so should have a £100 in reserve do you know by any chance the cost of a private consultation ❤️❤️

[SlowDragon Administrator in reply to birkie]

Typically £250

You would need to gather up a clear list / spreadsheet of thyroid results and note of what dose and brand levothyroxine or T3 taking at each test

And a short summary of thyroid journey

Plus most recent full thyroid and vitamin test results and ranges

Plus list of supplements taken

Obviously also that you’re severely lactose intolerant

[birkie in reply to SlowDragon]

Thanks slowdragon, ❤️No problem on the thyroid bloods I've got a file with all my thyroid bloods taken since my thyroidectomy 2019 , just had a full blood count on Tuesday so hopefully vit and minerals will be on there 👍

I'm having a colonoscopy on the 2nd June, hoping the inflammation shows up, I can then say its the thyroid medication thats flaring my colitis up, also the lactose intolerance , so maybe if that's the case I might be referred quicker but I will be picking the endo, if not I'll go down the private route 👍❤️❤️

[Hidden in reply to SlowDragon]

All good advice. When seeing a private Consultant I usually send them an advance email with a summary of history, results, medications and end it with a short paragraph of what I hope to get out of the consultation.

If I’m paying £250 for a consultation which used to be an hour and is now about 30 minutes if I’m lucky - I’m not going to spend most of it rambling through the tale of my woes.

[Hidden in reply to birkie]

Your situation angers me beyond words. Never could anyone have imagined that in the 21st century anyone would have to ‘save up’ for medical treatment - and even then, the consultant may not be up to speed.

The NHS is not fit for purpose. It is ‘broken’. The wheels have fallen off. Many practitioners in the NHS are good but they can’t work in this rudderless institution.

[Joant24]

That sounds so frustrating, fingers crossed you get it sorted soon.