Current meds40mcg liothyronine
25mcg levothyroxine
My T3 was not on my most recent prescription, so after 4 days of going back and forth to the GP, they have now told me I have to get it prescribed by my endocrinologist. I was already referred back last year after a review but I was allowed to stay on it. They have said that I need to contact him myself, and I’ve tried and can’t get through! They have not even offered me extra T4 in the meantime. Help please! What can I do?
You poor thing! That’s awful duty of care from your GP. I hope you get through on the phone soon. Failing that, turn up and make a fuss!!
I went up to the hospital in the end but to no avail! As they’ve discharged me they are unable to prescribe until I’m referred back by my GP. I have an appointment in the morning for this (it’s amazing how quickly you can get an appointment when they’ve failed you!) but in the meanwhile still no T3 and only 25mcgs of Levo. The last referral took 7 weeks but at least I had meds then. I dread to think how I’m going to feel after all that time 😩
This is an absolute disgrace. You can’t just be left severely under medicated in the intervening time. What on earth is your GP thinking of? Is he a sadist? He is going to make you ill and then you are going to have to go through the prolonged agonies of getting your dose back to optimum and balanced again whatever the review outcome. Please don’t put up with this. Complain! Loudly! I can’t believe your GP can be so cruel. And stupid. Is he qualified? It makes me really angry to read post after post like this. This isn’t the NHS our parents and grandparents made sacrifices for. The 3 founding principles of the NHS:
- that it meet the needs of everyone
- that it be free at the point of delivery
- that it be based on clinical need, not ability to pay
Well done to your GP for breaching at least two of those ideals.
It was. I have been stable on this dosage since 2006 🤷🏻♀️
Which CCG area are you in?
You may be able to find guidelines on Liothyronine policy on internet
Presumably your endocrinologist was NHS who originally diagnosed you as have clinical need
If well and stable on T3, the ongoing care is passed to your GP who is obligated to continue. Your endocrinologist is the specialist. GP can NOT overule
It is entirely unacceptable and directly against guidelines to withdraw an essential medication without referral back to endocrinologist
While waiting for this referral the GP MUST KEEP ON PRESCRIBING T3
british-thyroid-association...
See paragraph four on here - handy if you live in Scotland
beta.gov.scot/binaries/cont...
Do you have Hashimoto's?
Coeliac? Gluten intolerant?
Thyroidectomy?
Clear legal outline that GP can and should still prescribe
healthunlocked.com/thyroidu...
Sandwell and West Birmingham CCG and yes, it was the Endo that originally prescribed it.
Here's some links
NHS England - see page 19 - print and highlight - giving web address also
england.nhs.uk/wp-content/u...
sandwellandwestbhamccgformu...
Link from there to - print out and highlight
I do have Hashimoto’s
Let us know how you get on. Fingers crossed. Good luck.
So got an emergency referral for the 8th of November and a letter to take to the consultant. Endocrinology was closed today but managed to get through to his secretary. He has quoted CCG guidelines to the GP that they must supply T3 until my appointment with him so I now have enough to keep me going until I see him. Thanks all for the support 😊
Good news, well done. Your GP needs to read - rather than having to wait for someone to read the CCG guidelines to him. I think he’d find reading things properly a great help in many areas of his life. Good luck with the endo - the fact he has supported you with your doctor seems an optimistic sign. Good luck and let us all know how you get on. I really hope you get to keep the meds you need and I feel sad for those of us more recently diagnosed who will never even be offered T3 on the NHS. I would think new prescriptions for it would be a rarity.
Your combined dose of Levothyroxine and T3, the Levo dose is very low
What were your most recent blood test results?
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
When also on T3, make sure to take last dose exactly 12 hours prior to test
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
As you have Hashimoto's, are you also on strictly gluten free diet?
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
It’s been 12 months since I was last tested but I have always had my bloods done while fasted and not taking my dose until afterwards. From what I remember, my free T3 was mid range, my free T4 low and my TSH suppressed which is pretty much how they’ve always been. I can’t recall my other results, although I do have a B12 deficiency but PA was ruled out. I would need to dig them out.
I have tried to go gluten free in the past but have really struggled although I do eat LCHF most of the time anyway.
Thanks for your advice. Will hopefully get tested again after my appointment so will bear your points in mind.
B12 and folate need to be high in range
If you supplement B12, or have B12 injections, you may benefit from vitamin B complex as well
Vitamin D, most need at least around 80nmol and a bit higher around 100nmol may be better
Ferritin usually with Hashimoto's is low, but can be above range. Never supplement iron without testing
Gluten free does need to be absolutely strictly gluten free to be effective..see chris Kresser link above
Thank you. Will see what happens in the morning!
Finally been prescribed T3!!!
My nhs Endo has prescribed T3 trial 
Is NDT still prescribed on NHS
Have been prescribed T3!
