Endo update

[Jodiedebs55]

Hello

Just an update from my endo appointment on 16th jan she said she would inform my gp I need T3 as I'm a very poor converter, she didnt prescribe me it immediately which caused me concern as shes supposed to provide the first 3 month script then hopefully gp takes over responsibility, I have been refused T3 for the last 3 years so I source my own T3 and self medicate, they know this , and agree its working for me though I'm under medicated and need to increase my dose , anyway I didn't expect anything and spoke to my gp regarding the endos request and he said it's not a cost issue we just need the endo to be specific and actually put in writing the reason why you would benefit from T3 , as nhs DO NOT want us to prescribe ANYONE with T3 which we all know , so today the endo herself called me and said hi jodie would you like to come into hospital and collect your prescription for T3 .... oh my god !!!! So tomorrow I'm off on the 50 mile round trip to collect it ... happy days ... perseverance has paid off , ok it may not last forever but anything is better than nothing and now I won't have to pay privately for T3 and Ft3 tests as my gp will do it as I'm now prescribed T3... I wont lie ... I moved here deliberately as I researched where Gp surgeries prescribe T3 . I have lost the link now but I knew there was 2 gps at this surgery that do it . Its paid off. The lengths we have to go to for us to get well eh ....

[crimple]

Very pleased for you. I also got the go ahead for NHS to prescribe T3 and have just been told by GP surgery that my scrip will be sent electronically to a pharmacy that can supply me with Sigma Pharma brand due to several intolerances.

[Jodiedebs55 in reply to crimple]

Brilliant news

[waveylines]

Thats great news so pleased for you. We shouldnt have to fight so hard for medication that we need but there is a whole ridiculous system around the prescribing of T3 or ndt that makes it incredibly difficult. Well done for your perseverance!! Once you are getting it from the hospital they should be able to transfer it to your GP surgery. The GP surgery may insist on periodic checks by ypur specialist to ensure they are treating you correctly.

[Jodiedebs55 in reply to waveylines]

Yes I'm expecting more of a methodical check now that they will be prescribing the T3 ..

[Fruitandnutcase]

Whereabouts is ‘here’? Just roughly - not your exact address😉

We are planning on moving house at some point in the fairly near future and back in my young and healthy days I never in a million years would have thought being in a good hospital catchment area would be one of the deciding factors.

[Jodiedebs55 in reply to Fruitandnutcase]

Haha I moved from fowey in Cornwall to Kelly Bray Callington in Cornwall, I wont lie the deciding factor was the surgery dispenses T3 and were apparently more understanding towards thyroid patients, not true of all the gps there and certainly not true of the chemist pharmacist but worth it in the long run

[Hidden in reply to Jodiedebs55]

My GP has recently told me that GPs are no longer prescribing T3 Liothyronine on the NHS.Is this true for the whole country? I would be interested to know.I'm in Essex.

MyGP has said that it will now be down to my Endo to prescribe it for me.

[Jodiedebs55 in reply to Hidden]

Gps stopped prescribing it a long time ago unless you were already written up for it. 3 years ago at a different address and surgery an endo told my doctor I would benefit from T3 and that they should prescribe it . He refused. Iv since moved and got a different gp and endo but they are more willing to listen and actually praise thyroid UK and say a lot of their patients are members so they are aware . Its hit and miss I fear if you have a gp that isnt understanding of your condition it could be difficult to get it .

[Hidden in reply to Jodiedebs55]

Thankfully ,my Endo is now taking over prescribing my T3 and has brought my appointment forward from June to later this month......such a relief.

My GP told me he doesn't know much about T3 and I got told off when I tried to explain how important it is to us.......I despair !!

[Jodiedebs55 in reply to Hidden]

I'm so glad you are getting the endo to prescribe it, ahh I remember many a gp asking me why on earth I think TSH results are irrelevant whilst taking T3 😂 then talking over me while I tried to explain why haha . I pay more attention to admin of this group than I do doctors .

[Hidden in reply to Jodiedebs55]

Yes, thank goodness we get so much support and help from admin and members.

I think my GP thought I belonged to a local group and was taken aback when realising that our info comes from Thyroid UK with such a large membership , with contacts from abroad too.

All best wishes to you.

[Jodiedebs55 in reply to Hidden]

Absolutely didn't know anything until I joined here , I still no little BUT they never tire of me asking about test results and offering advice and their opinions. Helps loads

[waveylines in reply to Jodiedebs55]

Well thats not quite the case. They can prescribe but only under the guidance of a NHS Consultant Endocrinologist. The Endocrinologist has to prove that levothyroxine wont be sufficient before they can prescribe T3. So added barriers.....

[Jodiedebs55 in reply to waveylines]

My last endo advised my old gp to prescribe me T3 and said I would benefit from it , my gp practice refused and said no way but you can buy it yourself and we will monitor your blood results which they did .

[waveylines in reply to Jodiedebs55]

Thats a real shame Jodie -sounds a good endo though

Yes thats what happened to me Jodie but with ndt at my last practise. I put up with that situation of buying my own for two years then looked at other practises when the wrote a definitive letter saying the wouldnt prescribe even though it was benifitting me. I found somewhere that would. Unfortunately that was 10yrs ago & I dont know if touting for custom at other practises would work now.

However if your endo recommended it how come they are not complying. Was it NHS or private endo?

[Jodiedebs55 in reply to waveylines]

Its nhs and I moved here as I know the practice already prescribed to existing patients, my endo has now agreed to trial me 3 months then gp has agreed to take over... result x

[Hidden]

I admire your persistence. Ill people really shouldn't have to work so hard for treatment that helps.

[Jodiedebs55 in reply to Hidden]

Unfortunately we have no choice and have to be our own advocate

[Hidden in reply to Jodiedebs55]

You are right Jodiedebs, If everything goes well on T4 only you are lucky, if not then you have three double whammy of feeling lousy and trying to get the right help.

[Jodiedebs55 in reply to Hidden]

Absolutely true , I wish I was a T4 warrior unfortunately that wasn't my path , nope my body decided to be awkward 😭

[Myro]

Every eyes see different picture.

You have get a change to manage thyroid hormones levels.

I don't know what thyroid medicine You ore on. I suppose you are on T4 hormone. You have results of hormone tests. This is prove of bad converting. I would add T3. Starting by very low dose. Increasing every few days. To avoid adopt troubles. While this period you will find out when to take and lather how much each time. Living time of T3 is short. So it can be good to take dose twice a day. When? By symptoms. If you get sleepy early it can be low dose or taken to early or it can be time for second dose. If you will find out that you can not sleep at 10 pm you have to big dose or taken too late. Don't drink coffee except in the morning. To see effect of medicine.

Find out when to take last dose before testing. Some people were fine and taken off T3 or have been put on smaller dose because of test results. This experience could be find on internet.

To be only on T3 medicine is hard to be on proper dose. Need for hormones changes trough day, month, season and age.

Think with Your head. Ask yourself and find answer on internet. question first. Listen to your body, observe and research symptoms.

This is my opinion. You have to check, test and prove everything. Don't blindly trust, even yourself.

[Jodiedebs55 in reply to Myro]

I'm on T4 and T3 iv been on T3 for a while now and I take a morning dose and afternoon dose my problem is doctors have refused to accept my TSH is suppressed by the T3 they believe I'm over medicated on T4 which is totally wrong as my Ft4 shows I'm under medicated, iv been sourcing my own T3 under gp supervision but now they have agreed via endo to prescribe it for me , I was supposed to get a call today to pick up the prescription from the endo at hospital but they didn't call so il chase it up tomorrow but thanks for your reply I appreciate all feedback

[Myro in reply to Jodiedebs55]

One thing is to get T3. I was writing of proper dosing and monitoring.

Doctors are playing with your health. If you are taking T3, THS is not that think which should be guide for dosing. Level of FT3 and your symptoms are . Morning temperature ... Study symptoms, take your results of tests and write down your demand. Give it to doctor. Try to get documents for second opinion in country where T3 and NDT are normally prescribed. You know, from primary, doctor, prof, docent, nobel medal man ... It caunts.

They have experience. Becouse of bodybuilders and misuse of T3 many people are not treated well. By doctor you have to fall in health trouble to give you T3 back. Ask for written official opinion from your doctor. Send doctor your writing and demand for his opinion by help of lawyer. Find one who has experiance with doctors and health authorities. It will smell of doctors mistake and court process. If there will be process, go pro bono. Otherwise no. Don't believe lowers. They live of lies.

It is all about your quality of life.