I have been on T3 only for over 15 years. This was prescribed by a GP and Endo in Essex. 12 years ago I moved to Sheffield then Derbyshire.I had been with my new surgery for 2 years when out of the blue they started getting cagey about giving me T3, At first it was lots of questions and scaremongering at routine appointments.
Then last year the surgery pharmacist told me that she was not going to allow me to have it unless I see an endo back in Sheffield.
She was extremely rude and told me that I should get a private prescription if it meant that much to me. I put in a long comlaint which I had to chase up for six months. I finally got a thinly insincere apology and was told that ' lessons have been learned'
I used to get my T3 every 2 months but now only will let me have a months supply at a time which is always late, not available or some admin hold up.
Anyway I was referred back to the Endo after several months wait. I dug my heels in and showed the complaint letters.
While I was in the appointment, the endo showed me a letter from the GP surgery saying they want me to be on combination therapy back on levo with a small amount of T3. I did not receive a copy of this letter buttold the endo I was appalled and want a copy under a SAR (subject access request).
As far as I know none of the GPs in my surgery are thyroid specialists and I am getting quite sick of the struggle to stay on this medication.
I told the endo that I would much rather be on a simpler easier to obtain medication. I asked them what are the risks, to which there was no response. I then asked what are my chances of staying on this? or do I have a legal fight on my hands. Especially after being mostly well for over 15 years with no signs of bone loss, heart or other hyper symptoms.
I also pointed out that experiments over the years of coming off this or trying combination have left me very ill, and if that is the route to go down, I will refuse to work and claim every sickness benefit going far outweighing the cost of the T3.
So fed up with this ongoing battle.
But I am extremely cross with the surgery who seem to be very much on a mission to take me off this expensive drug. Rant over!
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Freewoman1997
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I am so sorry you been having the same problems. The battle is crazy. I been offered no tests to see why I cant tolerate T4 but perhaps now should insist? Its purely cost. I now have to spend hours on research to make a case to stay on this. If its that 'dangerous' or does not work why is it even used at all?Anyone else battled and won or lost? Be good to hear others tips.
I refuse to jump through the NHS hoops with all the worry and uncertainty about my T3 being withdrawn. Been self funding privately for past 2 years. 100 Thybon Henning 20mcg for £60 . On my pension I can afford this. Worth it for peace of mind.
Hi grumpyold I was in hospital before Xmas with an inflamed pancreas.I take 125mcg of Levo and 12.5mcg Tiromel.On my records I’m on 100mcg Levothyroxine and they were not having that I self medicate and especially with T3.I only take Aristo and refused the brand they gave me and was told I would not be allowed to take my own medication whilst in hospital.Thankfully I was out in 24 hours.Will need to look into how to get round that if i’m back in again
As you say, thank goodness it was a short hospital stay! I have read on this forum that patients hide their meds in their washbag. And incapacitated patients try to have visiting relatives/friends give them to them.We shouldn't have to go to such lengths to advocate for own health should we.
It’s actually quite scary isn’t it! That time has opened my eyes to what I have to try sort if I go in to hospital.Sure there is some way around it.If I had to stay any longer I told my sister I would just sign myself out
You're right, it IS scary. As if being in hospital isn't scary enough on it's own.I live in fear of having to be admitted for anything. I'm sure my partner would see that I had my meds with me hidden in my bag or somewhere.
I feel for you....does your sister live too far from you to help you if the need arose? It would be a shame if you had to discharge yourself. As you say, there must be a way.
Och,she is one of the best to be truthful and would be there in a heartbeat! Just lost my brother-in-law on the Friday and I was admitted on the Monday.Tried to keep her away as my brother-in-law was still within the hospital.Tried to put me on PPI’s at the doctors after telling me it was the oesophagus.He wasn’t happy when I told him I wasn’t taking them then went to the hospital as the pain worsened later
That was a lot to be dealing with at the same time. Hope you're feeling better now. 🙏Coincidentally, I have just refused PPIs too ( prescribed with a strong painkiller for chronic back pain. )
Told me the PPI was to prevent constipation caused by the NSAID. The last thing I need is less stomach acid! Needless to say, I'm not taking them.
Well on my way out to the docs that day I knew they were going to try prescribe them.There just giving them out like sweets.When I mentioned they can lead to dementia he want happy at all! Seems to be a pattern there I think.Im sure you are supposed to get a 24 hour test for high stomach acid
Hey SlowDragon thanks for replying! Was thinking of getting a medical wrist band but then I’m asking myself is that a bit extreme? The things that go through your mind after an experience.Crazy!
At least we know what we need to take to treat ourselves....many are not even in that position.
Their arguments against T3 are full of holes, it is no more dangerous than any other treatment out there....a medic once admitted this to me, but he is an eye surgeon!
Liothyronine use in a 17 year observational population-based study - the tears study
If you know that you cannot adequately convert T4 to T3 then an endo should offer a trial of T3.
Have you had the genetic test/ Dio2?
My Dio2 polymorphism is homozygous which means conversion is further impaired....
How much T3 are you taking? It may be the dose that spooks them!! I knew I didn't have a hope in Hades of being prescribed my dose...currently137.5mcg....despite the fact my body needs it to function. It would be a dangerous dose causing me to be thyrotoxic, if I didn't have RTH.
Ask them if they are prepared to accept responsibility if withdrawing your T3 dose results in your health deteriorating....but I guess they'd try to blame something else! Worth a try though.
The paper above is pretty clear evidence that T3 long term, if correctly used, is not a dangerous treatment.
I use Roseway Labs in London, they post my T3, appointment is £50 initially then £30 for repeats. They will repeat once without a call. My last T3 cost me £60 for 3 months supply.
Hopefully you won’t need that info, keep up the fight 👏🙏🌱
Thank you for your replies and can understand that you have gone down the self medication route for your peace of mind. But I feel that that after years of being on this medication that I should not be taken off it for no real reason?The postcode lottery is just not fair and with everything being so expensive now I just dont have the funds to go down a private route. I have never been offered any tests or guidance on how to manage my condition. Over the years it has causes poor health and as a result I have been underemployed due to time off sick or having to navigate dealing with a chronic condition. I was diagnosed in 2007 but was having symptoms many years before that. Its good to hear that you have found a way to manage your health without all of the drama.
I self source T3, its much cheaper than going through conventional sources. You dont need to pay for consultations or prescriptions. I fully sympathise with you and you shouldnt be in this position, but it seems as though your surgery are intent on getting your T3 removed. Could you get you MP involved?
I think they will have to prove it. The NICE guidelines outline you cant just have it withdrawn. I know I am very lucky to have been prescibed it in the first instance, but it has causs a great deal of stress ovee the years. I thought the oath of medical professionals is to do no harm?I may well get my MP involved if I have some fight left, but today I feel pretty done.
I can only get my NHS T3 prescription through a hospital pharmacy. My NHS endocrinologist prescribes. GP’s I’ve been informed cannot prescribe it anymore as it was put on a drop list by NHS.
Right, its about time I updated.But thanks to all those who responded to the thread.
I had a face to face with the endo assistant. Which then resulted in a phone call with th endo aa few days later.
The upshot of it is, they re really unhappy with me being on monotherapy, and a dose of 60mcgs. Afteer a lot of discussion where I got very upset and stated my wishes and rights. I told them my history and ongoing battles. To be fair they were very sympathetic and reiterated several times that the long term damage to my health would be serious.
After the face to face the assistant insisted I had a blood test there and then in the hospital. This was an hour and a bi after my afternoon dose so had had 40mcgs. So my T3 was raised (understandably).
After this long conversation I was asked to try dropping to 50mcgs with immediate effect. (The end goal to eventualy reduce dose and go onto combo therapy)
As I am curently off work due to waiting for an operation on my hand (unrelated severe thumb arthritis) I agreed.
Within 3 days I became very ill.I was highly anxious, extremely tired having to go to bed in the afternoons aand ached. Five days in I got a very bad cough /sore throat virus. The sore throat lasted 5 days and could barely eat but the cough got worse.
I was very worried as this mirrored two other ocassions where I have dropped dose. The previous times I ended up in hospital.
I realise know that thi is due to my temperature dropping on all ocassions. With a temperature of 35.7 I could not fight off any viruses.
A follow up with Endo and I told him how very ill I had become. I was asked to get a blood test. I arranged this but had to cancel as was too poorly to leave the house.
By day 11 I was so ill, I made the choice to up my dose again and within 36 hours started to feel better and started to recover. A at this point I was going to go to A and E.
Also despite eating much less (albiet moving around much less) I gained 6 pounds since dropping a dose.
Within 5 days of upping the dose I lost 2 pounds and now feel better.
Another call from the endo as I told him I had upped my dose, was not going to keep putting myself throough this and each time I drop a dose I get very ill.
That in all probability would have to work unti I am 68 be fit and have some quality of life.
I as then told lots of scare stories about my almost immement death from this medication (Secratary had emailed me the American Thyroid asssociation study (Funded by pharma who make T4) and the Korean study)
We then debated again,I told him I had been on forums where people are experts on their own bodies, only to be told it is not goodd to go on these and not healthy.
My T3 is a little high and 12? and TSH repressed.
While discussing the forums I did point out that I have never beeen told holistic approaches to manage this condition.
I have never been explained that I need to have good iron etc. I have onbly learned this here.
When I told the this I am finally being sent for tests. My arguement being - If they are insisting I go on altenatives, surely other factors here I can convert better need to be optimum?
I am understandly very upset. I would much rather be on the usual medication without this fight.
What really gets me? The total lack of medical curiosity and solution finding. The reasons why I feel so very ill reducing 10mcgs? The fact that it is such a rigid way of thinking and no other studies are valid.
I told the endo that I would rather have a shorter existennce, a full life than sat overweight in pain but with perfect blood tests.
I do not feel overmedicated. I am still 2 stones overweight, the hair on my legs has never grown back, I still get days of tiredness etc. I felt better years ago on 75mcgs but dropped as a compromise.
On a cellular level I need this dose as when I drop I really feel awful, brain fog the lot.
So they agreed I would stay on my dose while other avenues can be explored, but that the surgeon may not operate as I am at risk.
So now I have the anxiety of taking a drug I need only to be told IT WILL FINISh ME OFF.
Maybe look at self sourcing. Its entirely legal to import meds for personal use. You've been a "good" girl and gone down the conventional NHS Endo route,so no one can accuse you of being reckless or underhanded.
But now they wont play ball so you've got a choice to make. Either toe the party line and risk losing your T3 altogether or just being allowed a small dose, or get your own and sod them. At least that way you'll be in control, not them. You wont be at the behest of NHS blood tests and your surgery meddling with your dose.
T3, especially Tiromel, isnt expensive. I'm afraid really shockingly poor NHS treatment is driving many people down this path. Its totally wrong and indefensible but this is the reality we face. You could try posting asking for personal messages of sources of T3.
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