Update on my T3 journey !

[ferretmam]

Hi lovely people in my phone. Firstly i'd like to thank you all for help in previous posts, it made me brave enough to search out rather than sit and wonder if help would come.

I had the Mri as requested by the endo ( it shows some degeneration etc, but by his own admission he knows little about Mri pics and is seeking a second opinion and would really like a head and neck one taken as i have symptoms there, which i possibly shoudn't have.) He did say that he'd like to rule out a certain other auto immune issue.

So.... as i expected he reduced my Levothyroxine, my symptoms get so much worse when dosage is increased. My results were in range ( given on a previous post) but T3 still low in the range. He was very concerned about the tremors and head flashes i've been having ( They're a bit like someone switching a light switch, only to have a spark and then fizzle out ) My body temperature has not raised at all.

He's writing to my Gp advising HRT, i'm menopausal, he thinks i could benefit. He can't prescribe T3 himself ( probably because i'm just in range ), what he did say though was that he could ask my Gp to prescribe but he'd probably refuse based on budget grounds. I'm expecting a big fat No !

After a deep and meaningful conversation regarding self purchasing / self medicating, ( There were no... " Oh you might die or have a heart attack or might get osteoporosis moments " ) He isn't allowed to prescribe it privately to me, so.... He agreed to help and monitor me if i purchase my own.

I'm gonna take that as a tiny win for now. T3 now purchased and i'm eagerly awaiting their arrival. I hope that i do see a good result, i'm also going to document everything i do and all symptom changes as i hope one day to persuade that Gp to get his wallet out xx

[SeasideSusie Remembering]

Hi ferretmam

Just to say that your GP cannot prescribe unless a T3 trial is initiated by an NHS endo and if endo thinks successful and the patient should continue then the GP takes over prescribing.

He isn't allowed to prescribe it privately to me

As far as I am aware there is nothing stopping him writing a private prescription other than he doesn't want to. Happy to be corrected.

He agreed to help and monitor me if i purchase my own.

So a little step forward and yes, take it as a win

T3 now purchased and i'm eagerly awaiting their arrival.

Would you mind sending me feedback by PM about your supplier and how the transaction goes. I'm frequently asked to pass on feedback on suppliers but what I have is fairly old now and members don't think to send it me and sometimes when I ask my request is ignored. It seems that sometimes members are happy to ask for details of a supplier but aren't happy to share their experience with others

[ferretmam in reply to SeasideSusie]

Interesting 😆 So i pay for my own trial ! ( Crafty devil may / may not be setting me up to fail ( good job i've been doing my research 😂 )Will certainly send feedback on supplier as soon as it arrives x

[SeasideSusie Remembering in reply to ferretmam]

Will certainly send feedback on supplier as soon as it arrives x

Super, thank you

[SlowDragon Administrator]

If an NHS endocrinologist thinks you have clinical need of T3 they can and should prescribe it

Roughly where in U.K. are you?

Initial 3-6 months prescription is via endocrinologist/hospital pharmacy….then assuming trial goes well, endocrinologist writes to GP to formally request they take over cost and prescription…with annual review back with endo

Prescription numbers for England in last year

59,000 (up from 57,000 a year ago)

Searchable by CCG area

openprescribing.net/analyse...

Cost of T3 on NHS dropped dramatically

Down from £268 for 28 x 20mcg at highest (single exploitative supplier)

Now £59 for 28 x 20mcg

[ferretmam in reply to SlowDragon]

I'm in County Durham, he said because my numbers are still in range the trust won't justify. I do wonder if he's been in trouble, i'm not the first that should perhaps have had a trial and couldn't. Hopefully i respond well and i'm able to get some later x

[arTistapple in reply to ferretmam]

Mmm. I think very odd that he has not opted for being entirely above board too. However the culture of the guys at the very top of the departments are ‘what goes’. As I understand it’s the BIG doctors that have the last shout not the “Trust”.

[SlowDragon Administrator]

What has endocrinologist advised re how much to start on etc?

[ferretmam in reply to SlowDragon]

I'm to ring him soon as meds arrive, he'll then advise on dosage and when to retest bloods. I've seen on here and internet to start low and slow so if he advises other than that i will know it's a set up 😆I'm thinking 5 mcg and build up quietly from there after a couple of weeks, also reduce Levo accordingly as i progress ( i intend to shout for help if i get stuck .... which i probably will

😂)x

[SlowDragon Administrator]

Have you done Dio2 gene test via Regenerus

thyroiduk.org/deiodinase-2-...

Assuming you do well adding T3…..worth considering getting tested in few months

If test positive, can help get T3 prescribed on NHS

[ferretmam in reply to SlowDragon]

Yes i have, i do have the defect. When i discussed the test with him in January when i first saw him he didn't seem interested. I must say i think he thinks it's a menopause thing as it's always the first thing he tries to fob me off with. I don't agree as i had an easy transition and i already thought Hashimoto's would " get me " one day.... which it did

[Buddy195 Administrator]

I had to pay for my T3 trial ferretmam, so it’s not uncommon. I hope you can access some soon and it improves your symptoms.

Regarding HRT, it may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing HRT medications & having up to date research articles. There is also an ability to post questions.

healthunlocked.com/redirect...

[ferretmam in reply to Buddy195]

Thank you, will also take a look at the app. I've had a few friends struggled to get Hrt, so was very surprised when it was suggested. I do hope I see a little improvement soon this has been a long and tiring journey so far.

[Simplyred57 in reply to ferretmam]

My endocrinologist wrote to my GP and he now writes me a private prescription for T3 worth a try asking him🤞🏻