has anyone in the Derbyshire / South Yorkshire PCT catchment area successfully been prescribed T3 by their GP?
mine say it’s a red flag, and can’t be prescribed.
my endo said that I need it, as my levels are always in the lower end of the normal range, and recently lower than the normal range, he asked my GP to prescribe and fund, and he will oversee my care.
I’m between a rock and a hard place, 2 years of feeling rubbish. and symptomatic.
I’d be grateful for any suggestions please?
You can use Open Prescribing's website to find out anything like that (within England):
Thankyou for that very handy website.I've just found out that my GP surgery has spent zero pounds on T3 and cannot improve any more.It doesn't look good for me even if I can get an NHS trial from my endo which I was planning to do.
Derbyshire
764 prescriptions in last year
Typically 6 prescriptions per person per year
openprescribing.net/analyse...
vale of York
1062 prescriptions in last year
openprescribing.net/analyse...
If your NHS endocrinologist says you have clinical need they should initiate 3-6 months trial prescribed via hospital pharmacy
Assuming trial goes well, endocrinologist writes to your GP to request for them to formally take over cost and care of T3 prescription going forward……with annual review with endo
Endocrinologist may need to do “individual funding request “ on your behalf before GP will agree
Didn’t realise this was your first post
Welcome to the forum
How much levothyroxine are you taking
Do you always get same brand levothyroxine at each prescription
ALWAYS test thyroid levels early morning, ideally just before 9am, only drink water between waking and test ….and last dose levothyroxine 24 hours before test
Is this how you do your tests
Please add most recent TSH, Ft4 and Ft3 results and ranges
Also ESSENTIAL To test vitamin D, folate, B12 and ferritin at least annually
For good conversion of Ft4 to Ft3 we need good vitamin levels
Low Ft3 is very likely to result in low vitamin levels
When were vitamins last tested
What vitamin supplements are you currently taking
Please add most recent results
hello, thanks for the info 
I have had 6-8 weekly blood tests since my TT as I’ve struggled with low calcium, and hypo symptoms. papillary cancer, so my TSH is meant to be low. My 2 recent blood tests - a 24 hour urine test and a fasting blood test showed lower than the norm T3, but here was the last lot … TSH 0.91 (0.27-4.2)
T3 2.9 (3.1 - 6.8)
T4 14.2 (12-22)
Urine calcium. 1.8 (2.2 - 2.65)
Adj calc 2.17
vit d 76 (50-100)
PTH 2.9
Levothyroxine 112.5 (100/25)
Alfacalxidol 0.75 (0.5/0.25)
Vit D 4000
assuming test was done correctly and last dose levothyroxine 24 hours before test
FT4: 14.2 pmol/l (Range 12 - 22)
Ft4 is only 22.00% through range
Ft4 is far too low
You need increase in levothyroxine as first step up to 125mcg
Retest in 6-8 weeks
Likely to need further increase after that
Which brand levothyroxine
Most people on just levothyroxine will need Ft4 at least 60-70% through range
ALWAYS take levothyroxine on empty stomach and nothing apart from water for at least an hour after
any other medications or supplements at least 2 hours away
Calcium and vitamin D tablets at least 4 hours away
Are you taking any magnesium or vitamin K2
Essential to test folate, B12 and ferritin too
vitamin D still on low side
What brand of vitamin D are you taking
How long been taking 4000iu
A GP can not initiate T3
Initial trial is via hospital pharmacy
See details in this document
2nd box on page 4
NHS England Liothyronine guidelines July 2019
sps.nhs.uk/wp-content/uploa...
Page 9
Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron
See page 13
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
What was reason for your thyroidectomy?
Hashimoto’s?
Goitre?
reason for TT - multinodular goitre, largest nodule 2.5cm, all U3 on biopsy, but my hair was falling out, I was exhausted all the time, and my inflammation markers were up, as well as high thyroid antibodies.
Incidentally found papillary thyroid cancer, and I’d had hashimotos without being diagnosed or treated.
Thanks for the info, I’ll take a look
so with Hashimoto’s it’s highly likely you will need to be gluten and/or dairy free
Has GP done coeliac blood test
If not get tested BEFORE considering trial on strictly gluten free diet
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
Splitting dose levothyroxine and/or gluten free diet significantly improved conversion
See my reply right at bottom of thread
Hairloss frequently low iron/ferritin
Insist GP do full iron panel including ferritin
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
Test early morning and fasting
If taking iron supplements stop 3-4 days before test
medichecks.com/products/iro...
I’ve had all of these tests done, I was referred initially to my endo (March 2022) all that came back was slightly low magnesium, which I supplemented on his recommendation, it’s been fine since. I know what I need, it’s just getting it
test folate, B12 and ferritin at least once a year minimum
What were most recent results
Ferritin 74.1 ( 13-150)
Vit d 76 (50-200)
B12 active 95.9 ( 37.5-150)
Folate serum 5.5 ( > 3.89)
Folate too low
B12 and ferritin ok
How long ago was this test
Hi Liz I live in South Yorkshire. I'm on NDT, prescribed by GP. Been the case for the last 15 years.If your NHS Endo says you need the T3 then they should write to your GP. I assume they will continue to see you to over see the treatment? My GP at the time also refused to prescribe my Armour. So I shopped around. I contacted local GP Surgery Managers by writing to them and once they had agreed they would I moved.
With NDT it can only be prescribed on a named patient basis so a GP can refuse. I didn't think this was the case with Liothyronine.
Anyway as a first step I'd contact the secretary of your NHS Endo and see if the will initiate the prescribing whilst you shop around.
Feel free to PM me.
thank you so much!
The consultant endo wrote to my GP asking them to fund and prescribe, as he can’t at Sheffield teaching hospitals, but my GP said no, as Liothyronine has a red flag against it.
Absolute joke!
Look up Sheffield Formulary. A red listed drug is prescribed as in the following way:-"Definition Prescribing and ongoing supply is normally undertaken by a consultant or other physician within a secondary care service. In some exceptional circumstances and following discussion between primary and secondary care, GPs may consider it to be in the patient’s best interest for drugs in the Red section of the traffic light scheme to be prescribed in primary care. Red traffic light drugs meet one or more of the following criteria: 1. Require specialist assessment to enable patient selection, initiation, ongoing treatment and monitoring of efficacy, toxicity or adverse effects. 2. Specifically designated as “hospital only “either by product licence or by DH 3. Hospital initiated clinical trial materials used in accordance with the trial protocol 4. Not listed in the current BNF or BNF (C). 5. Being used to treat a condition that is not suitable for primary care prescribing because of disease specific requirements, complexity or defined commissioning arrangements. "
There is then a red red level whereby that can only be prescribed and supplied by the hospital. I wonder if your GP has confused themselves. I can't find the latest code level for Liothyronine. Back in 2001 it was Black. But your GP says its Red now which is better. .
I’ll add this to my very long list. I’m speaking to her at some point today (GP)
Hope you get somewhere Liz. It might be they are nervous because not familiar with Liothyronine. It might be they are worried about Litigation. However if you are stable then it's reasonable to pass care back. If your consultant is in charge of your care and is directing what dose to treat you with I can't see their problem. Your specialist is still responsible for you. Worth pointing this out to your GP!
that’s what I’ll be saying, as that’s exactly the case. My consultant said most GP’s don’t know enough about it, so would rather not get involved, but that doesn’t help us
But their backs are covered cos your consultant is still there. I think there's an element of passing the buck too. It's not on. You will need this treatment for life!! Good luck. Let us know how you do. 🤞🤞
My GP (South London) told me that the NHS is halting the prescription of T3 completely and forcing patients to switch to Levothyroxine. In part, he claimed the reason was the unknown effects of the long term use of T3. He also claimed that only one person out of 10,000 people was prescribed T3, I assumed that's in this area.
Mlinde
Your GP is making that up
over 62,000 prescriptions for T3 in England in last year
openprescribing.net/analyse...
Increasing numbers of prescriptions as price has reduced from £268 to £42 per 28 tablets
So Approx 10,000 patients
healthunlocked.com/thyroidu...
There are approximately 2 million people in U.K. on Levo
Yes, I'd like to know why he lied to me too, so I asked him. We'll see what he says.
Good Luck Minde. I think GPs just make things up sometimes to underline their point. My GP did this too but when I politely pointed out the facts he backed down. In fairness GPs are given a scary message about T3 & even a more scary one about NDT (they call it TDE!! 🤣🙄). The risks of osteopotosis is without solid foundation. Infact good solid large scale research is extraordinary scant so they have little if anything to substantiate the claims! And there is certainly no body or research which is the usual gold standard of evidence. What no one seems to do is research under or very delayed start of treatment and the long term effects. Am sure it's far greater than optimal treatment on thyroid products that suit each patient.
A lot of the anti T3 is scare mongering. And am sure big Pharma is happy because poor treatment means more symptoms needing more medicines to counter. This is just my opinion..
I don't expect any dramatic breakthrough, this is a long running drama, a David and Goliath struggle, with David on the back foot unfortunately. Frankly, I'm running out of energy to continue the fight, largely because I never see the same GP twice, so you're repeating the same stuff over and over. If I do get a sympathetic hearing, they retreat into the same mantra, that it's not up to them, it's out of their hands...
You have all my sympathy. Been there done the rounds. All I can say is knowledge is power so knowing your subject definately puts them on the back foot as most GPs know very little indeed! Am sure there's a warning on my file about me. 🤣 I don't care so long as they leave me alone.... My body, my life!! They don't walk around with the consequences of their treatment but I do! So yes will assert myself politely but firmly when I think they are going off track..
To tell the truth, the less I interact with the NHS, the better. T4 kinda works, that is to say, I have all the symptoms of an underactive thyroid but at a reduced level with T4. Whether T3 or NDT would change that I have no idea but it would be nice to know if they did or if some combination would. I still fail to understand the reasoning behind the NHS's position over thyroid treatment, it seems totally irrational, like a childish tantrum, a dogmatic intransigence in the face of overwhelming evidence to the contrary. There's something psychotic about the NHS' resistance, what can I say... as if to admit being in the wrong is too much for the powers that be to acknowledge.
I think the problem for them lies in your last sentence. They up the creek without a paddle so can't paddle back down.It's bad enough with individuals but when you get a body doing this the inclination seems to be to close ranks and all climb aboard.... Well most do. Now they've done that one can only hope they sink! They need a way out to save face.... so they can climb off their leaky boat.
What you can do is make sure your vits mins are optimal & you are optimal on your levo.. If that's not enough you may have to go private or some people as a last resort have gone off piste.
My levo dose is optimal, less and I get really ill, more and I get weird symptoms in my throat. My vits are good, tho folate is less than optimal but still within range. I eat a healthy diet, I'm doing everything I can to be in good health. Going private is not an option due to cost. I have investigated getting T3 privately but figuring out dosage has deterred me and I don't feel like experimenting.
You are as you say doing all you can. Self funding isn't cheap... and neither is private. Self treating is a hard road I agree. I felt like you not confident enough to do it. I did go private then once stable found my own sources until win my battle with NHS. It's definately not an easy road to walk along. Sending you hugs....
Yes, you're correct, I don't feel confident to self-medicate and seeking help from a GP is just not on. So, if I did get T3 privately, how to figure out the dose, in combination with T4 except through experiment? I do know that I'm one of the 10-20% who don't convert T4 to T3 very well, so if I'm on 125mcg of T4 what amount of T3 do I need to convert effectively? Do I reduce the T4 somewhat with the addition of T3 and by how much? Worse still, it takes a long time for the effects to percolate through the body!
I know you said you can't afford to go privately. But are you aware that Roseway Labs in London have a prescribing pharmacist working for them who will have a phone appointment with you, review your bloods, ask you how you feel and what you want to achieve and then give you a prescription for T3 that you get fulfilled with Roseway Labs. Their price is 50-60p per 20mcg tablet of Thybon Henning T3. She will advise on the dose. You try it for a while and then have a review. And onwards. I'm using this service for NDT now, I did it for T3 before. It's a lot cheaper than having a private endo. appointment. She's nice to talk too and she understood immediately that I had conversion issues.
Hi FancyPants54,
That's very useful information, thank you very much! I'll check it out.
it’s terrible that we are having to beg for something that we need
Yeah but begging doesn't do it, that's the problem. I mean just look at the people on this forum going through this, it's f**king outrageous! I've been on T4 for 15 years and from day 1 it was a disaster for me, I rue the day I ever started on T4 but I didn't know any better unfortunately. For 3 years after I started on T4, I was in a brain fog as my body attempted to adjust to the hormone's effects on my system but what did I know? Nothing! I got no help from the NHS, not a single thing. They dish out the pills and it's end of story and nothing has changed in these 15 years. I'm disgusted.
it’s happening too often, if only they’d listen to us
The NHS is an autocratic bureaucracy, totally embedded with big business interests and now almost totally privatised, with a veneer of public 'ownership', it has no intention of listening to us. Successive govts have gutted the health system as part of the privatisation process, forcing us to go private or use private health resources (but paid for out of the public purse!) and we've stood by and let it happen.
I wrote letters as well and asked that they were put on my medical file. That's a hard record for them to dispute.... Conversation are recorded by the GP as brief sumarys...
While you get T3 issue sorted, first need to increase levothyroxine dose and get all four vitamins retested and improved to optimal levels and trialing GF/ DF diet
We need all our 🦆🦆🦆🦆 in a row first
I got my T3 medication as my level was very low and I hardly convert from levothyroxine T4 by going to see a private only endocrinologist, which wasn’t expensive. My 3 month private trial on T3 combined with T4 levothyroxine was a huge success for me. My GP couldn’t prescribe T3 medication. My NHS Endo initially refused to prescribe it too. But after some intervention from my private only endocrinologist I was reluctantly given the T3 prescription by the NHS endocrinologist. That was nearly 4 years ago now. I’m still getting my T3 liothyronine medication from the NHS Endocrinologist and have to collect it from the hospital pharmacy. It’s never been passed over to my GP. I was told it’s a hospital only drug. I live in Cheshire.
Think it's a postcode lottery. Some areas are more tolerant than others.. My NDT though recommended by a NHS Endo and over seen for over four years is prescribed on a named patient basis only by GP. This means if they change their minds they can withdraw from prescribing. Still been like it for years now.... but it does feel unsafe in terms of prescribing. I am tested annually.
I feel unsafe with my NHS hospital T3 prescription. I keep an annual consultation with my private only endocrinologist also just in case the NHS pulls my prescription. It should definitely not be like this. Putting patients under unnecessary pressure and medication insecurity. I’m also prescribed liquid levothyroxine due to poor absorption of tablet form and that has been very tricky to obtain the past year. My local pharmacy has explained that there are supply issues with many medications especially diabetic ones. Both my medication manager and pharmacy say it’s down to Brexit. I’m a passionate remainer and mad as hell with Brexit, which also caused interruption to my liothyronine T3 prescriptions that I use to be able to obtain from Germany, not able to any more.
So sorry to hear this McPammy. I feel the same. By good fortune I have been stable for years on my dose of NDT... But like you I have this deep fear of it being withdrawn out of the blue by the NHS.I have an op coming up & will be in hospital for a few days. I know the medics won't understand my NDT. I try to keep that seperate as they haven't a clue about giving it on an empty tummy long before breakfast. However this time it involves a stay in ICU so just have to keep my fingers and toes crossed. Also at my hospital is a notorious well known Endo who if they pull him in will defo stop my NDT. But I need the op... Lol.
I wish you good luck and a speedy recovery to get back home. It’s a worry this medication business isn’t it. And it shouldn’t be! You’ve got enough to be concerned about no doubt with your operation and an icu stay. Hope it all goes well for you 😉
if you get a confirmation of diagnosis you can go to Roseway labs. They do t4 + T3 formulations and armour / NDT. It is a private service, not sure about getting it under NHS but check out their website
rosewaylabs.com/specialisms...
Thank u you. That's useful as a back up as I get my NDT on the NHS. Do you need a prescription or can you buy direct?
I just rang them & they have a Prescriber. Even so would cost me all included around £2000 per annum on my current dose. I would struggle on my pension with that cost...
Better hope NHS don't ditch me! 🫰🫰
I think if your Dr is happy to write the prescription they will fill it but not a lot of GP’s will because it’s off licence or not “recommended” on NHS. If not they have their own private Dr’s (£30) and you just provide confirmation of your diagnosis and they can prescribe. They also do low dose naltrexone, if you’re autoimmune it may be helpful. But yes you do need a prescription otherwise Mexico pharmacies online, no script
From their website:
Personalised thyroid medication
There are many advantages to using compounded treatments for thyroid medication. When you prescribe compounded formulations, you can:
Use synthetic hormones or natural desiccated thyroid (porcine gland) to restore healthy thyroid hormone levels
Combine active ingredients so that the patient only needs to remember one medication
Alter the relative concentration of levothyroxine (T4) and liothyronine (T3) to optimise treatment
Change the dosage and concentration to fine-tune thyroid hormone levels
Specify a suspension or capsules according to patient preference
Eliminate specific ingredients like dyes, fillers, lactose or corn if your patient has an allergy or sensitivity, which can happen in people with Hashimoto’s thyroiditis
I rang them kitcat. Am impressed. It's great to have this up my sleeve. Thank you. NDT is prescribed on a named patient basis. It means a doctor take responsibility for prescibing it However they can refuse/, change their minds so it leaves you open to loosing your NHS prescription.
If I change GP surgery I would have to negotiate this all over again. The point being they can say no.
This leaves me feeling insecure even though my current GP Practise has prescribed it for years.
You’re welcome, I found them since I was hunting about for info after listening to Keith Littlewood on a podcast my sister recommended podcasts.apple.com/gb/podca...
I don’t subscribe to her Covid views but she has some interesting things to say.
Keith Littlewoods website
I totally get your worry, I had a hard enough time with my GP just giving me a letter confirming my rosacea so I could get Low dose naltrexone privately. The way he behaved you’d have thought it was him writing the script when he knew nothing about LDN. 🤦♀️
Wow! That certainly adds up! May be cheaper to buy cynomel all the way from Mexico!
I'm on NDT and it suits me far better than liothyronine. I tried that years ago. NDT gives me a level feeling no spikes like I got with Liothyronine despite splitting it.So would be reluctant to give it up.
Fingers crossed 🤞 it never happens
Are you in Derbyshire? I've found the Derbyshire formulary. It does allow T3, and a GP can prescribe under a shared care agreement. So much scary language and tactics about T3 as if it's black magic. And they say do not prescribe, but then go on to say how you can prescribe.
If you're on Facebook, do join us on ITT Improve Thyroid Treatment group. We have template letters and details of all national guidance and parliamentary statements on T3 which should be followed.
uhdbformulary.nhs.uk/chapte...
derbyshiremedicinesmanageme...
derbyshiremedicinesmanageme...
thank you!
Yes, I’m in Derbyshire.
I’m on that Facebook group x
But they are clearly anti NDT then as it has a DNP against it.
Almost areas won't allow NDT - it's worse than T3.
But at least we do now have national guidance (and statements in parliament) saying we should have T3 if we need it. Problem is, many areas choose not to follow national guidance...
I know it's really bad. Hope they leave me alone....
in my humble opinion and experience, I would recommend getting a specialist if you are needing t3. Most st general doctors do not know anything of this-yes I know I didn’t answer your question- I think having t3 issues bring the level of complexity much higher
A GP is not allowed to initiate T3 treatment. Only a NHS Endocrinologist can.....even though many have very little training in that field, mainly diabetes specialists... Lol. When it's access is squashed so heavily on the NHS... It forces people to go underground. I'd understand it if the NHS had solid research on it proving it causes harm but they don't. That's unforgiveable.
GP thinks my memory and concentration issues are fibromyalgia or CFS not thyroid
Opinion on these TSH, T3 and T4 values
T3 Medication
