Hi was given trail of T3 but Gp refused to take on prescription.
I returned to the specialist who prescribed but felt I was trying to squeeze them for next prescription.
Also first month trail I felt good, second month new batch and back to brain fog so returned to dispensing pharmacy to ask if they were different brands of T3 but was told they only ever do one brand so must of had same both months??? I'm confused as if they were the same why did I feel so differently on them?
Anyway my Endo has mentioned another trail but no prescription has been sent via post or letter to say when or where to obtain the T3 so I'm wondering what now??
Do I return to clinic and again feel like I'm pressuring for T3 although I didn't personally mention another trail. Or should a prescription should have been sent??
Also any ideas how my gp surgery was aloud to reject my T3 prescription despite hospital giving the OK?
And why another trail?? Wasn't the first one Suffice to discover if suitable??
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Timbutdim
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I was given 20mcg tablets to be split into 4 x 5mcg, very difficult to do even with the pill cutter. I was told to take 2x 5mcg daily, one with 125mcg Levo in the morning and another at 4/5 in the afternoon which was usually the time I start to nod off at.
Our university hospital pharmacy staff stated they only have ever prescribed Mercury Pharma.
The whole ordeal made me feel confused as the first batch of T3 effects were very good and I felt like the old me again so was deflated after second batch.
I've been on D3 doctor prescribed for a long time and I have no idea what my levels are now.
Brain fog and mental confusion seem to be mostly ok at the present and I'm putting it down to ashwagandha and ezetamibe. I have porridge oats with semi skimmed milk every morning but have cut back on breads cheese and cream and try to eat salad with every meal which I'm quite successful at now.
So you need to get full thyroid and vitamin testing done. See exactly what vitamin levels and thyroid levels are like
Gluten free diet needs to be absolutely strictly gluten free to be effective
Oats need to be certified GF and from “Free from” section in supermarket. Grown on field never has grown wheat, barely, and rye and milled in gluten free mill
Don't understand why private prescription price per tablet cheaper than nhs.
Just recently had bloods done for endocrinologist about a week ago but not heard from him but will phone and ask if they can send me results via post.
My usual diet is usually my porridge for brekkie followed by a large salad with either chicken or some type of seafood eg salmon, prawns, scampi, haddock, cod, or a couple of cold boiled eggs or some chicken . I may have a pizza one day every 1-2 weeks. And at mo only eating one cake a week no biscuits or sugary snacks. No sandwiches, toast ect. Puddings now are yoghurt or some ice cream .
My oats are whole grain but not free from and do not have gf certification but will look next time for better quality oats.
Even worse, the immune response to gluten can last up to 6 months each time you eat it. This explains why it is critical to eliminate gluten completely from your diet if you have AITD. There’s no “80/20” rule when it comes to gluten. Being “mostly” gluten-free isn’t going to cut it. If you’re gluten intolerant, you have to be 100% gluten-free to prevent immune destruction of your thyroid.
It’s possible to get gluten free pizza, cakes, bread, etc
Very widespread Media coverage re price and difficulty patients have to get T3 prescribed
Yesterday was my cake day and funny enough my head feels wobbly today, so maybe it is the gluten but last week with the same slice of cake I was ok so a bit confusing there must be something else concerning lifestyle and environment.
Yes I did read a while back about the loop hole and T3 prices going from under three pounds for a months supply to nearly three hundred pounds . Shameful to make money in such a way . I can understand the cost being means tested to the point where those over a certain salary who can afford several holidays a year, huge posh houses and fancy cars and clothes and draped in gold not
to use the nhs and to pay the correct amount of tax and contributions to support those that can not work instead of looting NHS funds via medication price loop holes.
I feel I have to point out that Thybon Henning is only available via private prescription, the NHS does not prescribe this T3. The UK licensed T3 is currently being charged to the NHS at the price SlowDragon has previously mentioned but, beware, those licensed T3 tablets are way more expensive on private prescription. I paid £220 for 28 Teva T3 only a month ago so, before you think it’s easier to get it outside the NHS, think again. You will also have the added expense of seeing an Endocrinologist on a private basis.
Tim If it is an NHS endo that prescribed the prescription the normal protocol is a 3 month trial and then the endo tells the GP to continue. Sometimes the trial can be longer. I was given a years trial.As with other thyroid medication you need to build up the dose. So the initial benefits can wear off and an increase in dose be required.
Along with this on combo there is a levo dose to manage. It has taken me 2 years to make changes in doses of both hormones to find levels and dosing times that suit me
If the endo is private then the GP may well not take on the cost of T3 and you would need to get private prescriptions fulfilled yourself cost £1 per tablet.
The endo who I'm under is NHS. Initially his co worker prescribed the T3 going off past test results but had my consultant agreed and write the prescription. obtaining the next months prescription was difficult and as they didn't say how long the trail would be for and my next appointment wasn't for another few months I wasn't sure where or what to do and didn't think to ask at consultation. I'm pretty sure the consultant did not mention how to obtain future supply. My gp out and out refused so I went back to consultants secretary who obtained second prescription via another consultant.
I just think the entire process was badly managed and made me feel like I was begging at the palace gates like a peasant🤕.
I thought they would have explained how and when or even if I was to trail the T3 for the second month and if so send the prescription or tell me how to pick up the prescription as to not cause extra stress.
After the second batch I didn't feel good and felt that getting hold of the prescription was so stressful it wasn't worth the hassle. If the second months batch made me feel like the first month I would have grinned and bared it but after all that I just felt it wasn't worth it,
Again whilst a phone consultation my endocrinologist has said about another trail but no mention of where when or how?? One thing is for sure I'm not going down and begging.
endos are not good in general about how to trial it either. They expect you to go from your dose of levo right away onto a combo dose and this is wrong. If your ft4 is top of range then you need to cut back on levo . T3 should be introduced in quarter tablet doses. In reality by the end of the 3 months you might just have built up to the doses prescribed.
To be fair the first month went very well, second month not good but same dose5mcg 2x daily but despite the pharmacy claims I'm sure the tablets they gave the second month were different from the first but you can not argue with them.
My other concern was lack of information on how and when to obtain 2nd and 3rd mo this prescriptions. Felt like I was left in the dark a bit. I think they should tell you this information as surely they must know that a patient with brain fog is not going to be thinking that far ahead. Well I certainly wasn't anyway .
Initial trial is 3-6 months prescribed via hospital pharmacy
Important to stick on one brand T3
Assuming trial is gone well endocrinologist writes to GP to formally request they take over care and cost of prescription……some CCG areas are worse than others re taking cost on
Once trail has started should patient have to chase prescription? How are prescriptions supposed to be supplied via hospital each month if patient only sees endocrinologist once every 3-6 months?
Well I guess that's why the gp did not take on prescription as was only 1 month in.
I have no idea which CCG I'm in, how would I find this out?
I got 3 separate prescriptions in one go then the hospital posted them out to me for the next 3 months. You would expect to only see the endo once every 3 months so they should have a system.
Thanks for the link SlowDragon I have somewhere to contact now for system limitation issues, should be very useful.
Just had a little browse, they mentioned, not thyroid related, "open letter " to residents? Not sure what they mean by an open letter, concerning covid restrictions and precautions, but no letter has came through my letterbox.
Not sure how to interpret analyse for T3 Coventry ccg, Can only draw conclusion from my own experiences .I find most things in life sound fantastic on paper but reality is very different. I booked a holiday a while back. The picture sold it for me. When we got to the destination the view that made me book that location was in fact a carefully placed landscape picture that was hanging within the dinning area😤 I felt hoodwinked. Don't trust much these days everyone looking to deceive others for own benefits. 😩 Sorry to be so pessimistic. 🙂
I saw an NHS endocrinologist, two months before first lockdown to see if he would agree with me that I needed T3 , I was self medicating over many years successfully myself T3 only ! But my doctor didn’t like me self medicating so I saw this endocrinologist, He agreed after looking at blood tests over the months that I needed T3 but wanted me to trial with additional levothyroxine too !I was so happy I agreed as the important thing was he agreed and I was given a prescription for my T3 so would no longer have to struggle again sourcing it ! Gave me prescription and said hospital pharmacy will fill it !
I was to come back in three months to see how I was
I went to pharmacy and they almost laughed at me , they said we have never given this we don’t have this , who wrote it take it back ? I walked all the way back and caught him between appointments, I said look they laughed and said you can’t give this ?
He took the prescription from me and said I will be in touch ??
I’m sorry it’s best to do it alone and don’t trust endocrinologist or doctors if you need anything other than levothyroxine
That doesn't surprise me at all. 1st occasion I had a piece of glass in foot, couldn't walk on it, gp at walk in centre made me feel I was wasting her time and told me to go chemist as it was a varuka, excuse spelling. 2nd incident they wrote a prescription for me when I went to get it dispensed was told item no longer exsists? 3rd was prescribed a different medication from surgery practice nurse in replace of none exsisting item walk in centre prescribed, alls well so far until I tried to get it repeated three months later was told by same practice gp who prescribed that, we do not prescribe that medication??? I said your practice nurse??? Didn't get anymore though. Got another product that didn't work instead.
Did the endocrinologist go of old blood draws to make decision as not sure how he/ she could make diagnosis if you were already self medicating?
I will self medicate via herbal remedies but would not touch T3 on the black market as it ruins our economy.
Hi endocrinologist went on blood tests over the years was all there for me to see ! The diagnosis was clear to see by even me that I did better on T3 only !
I don’t buy anything in this country on the black market I’m not putting anything dodgy in my body … thank you for your help
How on earth do you make out that buying our own T3 ruins our economy!?
Thousands of us have to buy our own, either from abroad or via a private prescription. Herbs do nothing for lack of thyroid. You really don't seem to know what you are doing. So it's time to learn or you will not get well. You were given a wonderful opportunity to trial T3 but failed at the first fence of getting the prescriptions filled. You should have been been on the phone to the clinic for advice, to the hospital pharmacy, the consultant's secretary. And as others have said above, but you haven't acknowledged, it's pretty normal to feel good at first but then our bodies adjust to the new hormone and we need more of it so we feel worse again until we get a dose increase. You should have done the 3 month trial and gone back for review.
Firstly the name defo suits.😂😂And secondly we don't all need more some need less and have less and are satisfied so I guess I'm not the only person that knows not what I'm talking about😝.
For every person paying hyped up prices for medications, dental work, you are pushing the price and affordability out of the hands of those of us that do not have the means.
I have heard the bible story of the impatient person that pestered our Lord for healing and jumped before others, I choose not to be that person.
It's insulting to the thousands of suffering thyroid patients who will never get the treatment and tests they need out of the NHS if they wait until the day they die.
You believe in religious fairy stories. Well ask God for help with your problems then and see how long you can stand the wait.
Timbutdim are you on Facebook? If so, do join us on ITT Improve Thyroid Treatment. We have template letters you can use, and all the national guidance that CCGs and doctors should be following. This may be very useful for you.
Thanks for reply, No I'm not able to add groups to my Facebook account as have an older outdated version as my phone does not support the modern apps but thanks for the offer.
It depends what NHS trust your under what budget they have and how many patients they have on T3 and what protocol they are following , an endo will prescribe only through hospital pharmacy as they are covered then by insurance, GP wont prescribe as it's blacklisted since 2018 unless endo takes full responsibility for your care and medication which I doubt they will as if anything happened they aren't insured (unless they are confident and have experience with patients on T3 already and the majority don't) when it goes through primary care and will get struck off if anything happened to you. It's very hard to get a trail of T3 now and they likely will prevent you from continuing the trail if you say your not getting any benefits from it as they don't want to prescribe it to patients as it is so expensive and majority don't have experience in it so they don't like prescribing it even if it will give patients a quality of life .....so they think they can fob everyone one off and keep everyone sick on cheap prescriptions of levo when many patients have lots of issues converting which they are more than happy to dismiss.
Sounds like you have been up against this T3 denial yourself.
I probably didn't help the matter as I was honest and said first month yes an improvement, second month totally different, brain fog back, motivation gone, told the pharmacy they can take second batch back but they wouldn't put the cost back into the NHS funds so I kept them. I'm pretty sure I was part of some blind test but they say that's not allowed. I did mention to them how do you think double and triple blind test are achieved but the don't respond to that, just a shrug.
"I'm pretty sure I was part of some blind test but they say that's not allowed. I did mention to them how do you think double and triple blind test are achieved but the don't respond to that, just a shrug."
'double blind ' trail does NOT mean "the patients don't know they are involved in a trial"
it means , "having agreed to be involved in a trial , they do not know which group of the trial they are in, and also that the doctors giving them the treatment do not know which group the patient is in"
Hence' Double-Blind' as they are both 'blinded' to who's taking the real one.
They can achieve this by, for example, making a placebo tablet containing 'nothing' ,which looks and feels exactly the same as the tablet they are trialling... and only the researchers have access to the coded record of who's actually taking what.
It doesn't mean they just hand duff medicine out at the pharmacy and see if anyone notices....
"i told the pharmacy they can take second batch back but they wouldn't put the cost back into the NHS funds..."
chemists cant take back medicine and use it for anyone else once it's been out off their control ... anyone could have done anything to it ~from deliberately adulterating it somehow . (like those people who used to put ground glass in baby food).... to simply not storing it correctly.. so they could not give it out to anyone else for these reasons. So NHS still have to pay for it and throw it away, even if you give it back.
When I started on T3 meds, my symptoms improved a lot, but that effect wore off after about 6 or 7 weeks. My endo then upped my dose and again, my symptoms improved for a while. He told me that we need to keep titrating up, until we find a dose that keeps the symptoms at bay.
Thank you for your reply and for your guidance with individual funding. At present I'm happy to stay on dose I'm put on but will certainly consider my options if things change. 😀.
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