Hi all, just thought I might pop in with a little update
After consulting the list of friendly NHS Endos that I was sent through this website, I settled on one that operates in the Devon area, and was successfully referred by my GP. I had the appointment yesterday, and although I didn't see the doctor that I asked for, the appointment went really well, I think. The doctor acknowledged my concerns and even suggested T3 before I got to ask for it, and also demonstrated knowledge about NDT (though he seems hesitant to actually prescribe it). Many of the things he told me are also consistent with the info I've gotten from here! So I'm overall pretty pleased about how the appointment went.
I haven't been prescribed T3 just yet because my dr was concerned that it might work and I could feel better on it just as the government potentially decides to make it impossible to prescribe anymore. For now, we will try increasing my dosage of Levo to 250mcg, depending on what the results of the blood test I took yesterday are.
If anyone in the Devon area would like some more info about the hospital I went to/ the doctor I saw/initially wanted to see, please make sure to PM me rather than replying here
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lau99
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I think that makes up a part of his concern, but I also think that just the precarious nature of prescribing T3 on the NHS has made him hesitant to prescribe it as well. He feels that because the price has been made so high, there might be a time when the NHS just decides it isn't worthwhile to keep T3 since they already seem to think Levo is the better alternative. Then I might have to get it privately, which he understands might be difficult for me, being a student.
You'll be relieved to have had a successful appointment and am glad he's offering T3.
Re NDT - it was withdrawn due to the False Statements made about it by those who should know better but do not. They've always looked for excuses to withdraw NDT just as they've done with T3 due to its exorbitant cost and also the belief that T4 is superior to T3.
It's pretty sad to think that our options for medication keep dwindling even though we need them to function. Still holding out hope that someday this could be reversed and we can get our medicine more easily again!
Yes, this was an NHS endocrinologist. He seems to be happy enough to prescribe it if I really need it and don't improve on an increase of Levo the way I did when going from 150mcg to 200mcg. I think he's just mindful of the fact that I may not be able to afford T3 if the govt were to one day yank it away from the NHS, being that I'm still a student. My bloods from January indicated that the addition of T3 could help, but he wanted to check them against my current bloods as of yesterday before proceeding any further
Completely agree , they should prescribe but they won't always prescribe. I have been fighting this battle for a year now and although my endo agrees I am much better taking my ( self sourced - on his recommendation no less!)T3 he still will not prescribe due to cost.
He has written 3 times to my GP to ask them to prescribe but they are refusing because "they don't feel comfortable,/confident " prescribing this medication.
He says he doesn't have to prescribe it through the hospital pharmacy as I started taking it myself due to his suggestion that I buy it myself, ( his only reason for not prescribing was that it would "bankrupt the CCG " if he gave it to me ).
That is why he's written to my GP 3 times as he now acknowledges that I am stable and well on it. They are still refusing for the reasons I stated above.
I know, I feel like I'm twirling in a washing machine being pushed from pillar to post over this. What I do know is that without the T3 I wouldn't have the energy or the mental capacity to keep fighting this.
One of the reasons I refuse to let this rest is because there must be many more people who can't get well on levo alone and who are being fed the "cost" line and don't have the energy to fight the system or even worse are not even being told that there may be an alternative treatment that would restore their health.
Thank heavens for this forum and the knowledgable people like yourself , without you all I'd still be unwell and not have the faintest idea what to do.
I've presented that very document to the Pharmacist at the GP surgery ( she doles out prescriptions) and shown it to the consultant, still to no avail.
I think it was you who gave me the link to that info before, I also took it to my MP who was looking into the situation but that has all been quiet during the Covid 19 crisis.
The Consultant seems to be a good doctor, especially being aware of NDT.
NDT was the very first thyroid hormone replacement which saved lives since 1892 and was removed from being prescribed by the British Thyroid Association, without notice too and leaving many patients high and dry.
I think it is awful that NDT - having proven its role in saving lives since 1892 has now been withdrawn in the UK due to False Statements.
A doctor/scientist who was also an Adviser to Thyroiduk wrote to the Association and followed up every year for three years but never did get a response. What kind of minds do these supposed to be experts have that they have to make False Statements about a safe thyroid hormone replacement in order to have it removed- one that contains all of the hormones a healthy thyroid gland would do.
In the UK, we've gone from prescribing levothyroxine, NDTs, and T3 to levo only. I, for one, couldn't recover on it and in fact I was far more unwell on it than before I was diagnosed with a TSH of 100. The Cardiologist was also puzzled and was considering putting an implant into my heart to 'see' what was going on. Thankfully just at that time some T3 was added to T4 and it had an amazing affect that resolved symptoms.
Hi, and shaws , what heart issues were you both getting that T3 helped?
I'm stuck in atrial fibrillation and I do wonder if it's because of low T3 but the cardiologist just squeals if I mention T3 and says it will cause it. I don't believe that unless I'm overmedicated, which I'm nowhere near. They scared me off T3 for the past 1 and a half, I need to get back onto it I think. I would love to hear that either high heart rate or arrhythmia improved for either of you when you started T3.
Initially, when diagnosed and given levothyroxine I was having horrendous palpitations, mainly during the night. I sipped ice-cold water and put an ice-cold towel around my neck too.
The Cardiologist was very good and I had several overnight recorders (don't know the proper name) and he was very puzzled and was thinking of putting an implant in my heart to 'see what was going on'. Just then T3 was added to T4 and palps resolved and I never saw or had an appointment with the cardiologist again. T3 calmed my heart/body. I am not saying that others would have the same affect but it is the 'active' thyroid hormone whereas levo is inactive and has to convert to T3.
It is a magical pill for some. It's a great pity that those who are supposed to be 'experts' are definitely not when they refuse to prescribe or add T3 to their prescriptions, for those who cannot function without it or don't improve on levo or NDT.
Doctors in the past who were trained on clinical symptoms alone didn't rely upon blood tests
'Old fashioned doctors' knew all the clinical symptoms and we were diagnosed upon them alone and given NDT which was gradually raised untim symptom-free.
Glad to read you feel you have found some help within the system and been listened to.
No thyroid hormone works well if vitamins and minerals are not maintained at optimal levels so if would sensible to get these checked up with your doctor and let us know the levels as although they made be said to be fine and ok and in range, we need them at optimal levels and will advise you accordingly.
I think I remember you were on this higher dose before and if so, how were you feeling ?
Did everything fall down when you moved surgeries to take up your university place?
Hi penny x Will definitely make sure to bring this up with my Dr, as we are having a catchup consultation again in the near future. I have been on 200mcg since around December or so (I actually secretly increased my dose up to 200mcg because I was feeling so awful, then got it authorised by my GP later), and although it was miles better than being on 150mcg, my digestion problems didn't start getting more under control until I had been on prucalopride for a couple of months. I've been with this GP surgery since I was hyper, but things started to fall down when my old endo discharged me before I could voice my concerns to him, and has since blocked any of my attempts to get help.
Well I hope this is the start of a better phase of thyroid management for you.
Constipation is a well known side effect of hypothyroidism as when your metabolism is too low for your body to function properly everything slows down, physical ability and stamina, mental and cognitive functions , and the list goes on, as we all know.
It also leads to slow digestion, and this in turns leads to the inability of your body to extracts the essential nutrients from your food, and obviously bowel movements will slow down too, causing other issues that most of us have probably experienced.
So, let's hope s/he has seen it all before and knows your metabolism is too slow for your body and once sees some T3 and T4 blood test results will spot the imbalance and adjust your thyroid hormone replacement accordingly, and then, hopefully, you'll have no need for this Prucalopride which probably comes with it's own set of side effects.
It might be worth asking your doctor the implications of this laxative drug in relation to your vitamins and mineral levels and as to any interactions it may have with levothyroxine.
T3 is not T4 - they are different thyroid hormones that your own thyroid would be supporting you with, if it were still here. A ball pack estimate of daily thyroid production is around 100 T4 + 10 T : with T3 being about 4 times more powerful the T4. T4 is a storage hormone and some people are unable to convert it into T3 which is the active hormone that the body runs on and read most people use about 50 T3 just to function.
Some people can get by on T4 alone, some people simply stop being able to convert the T4 into T3 at some point in time and some people simply need both these vital thyroid hormones dosed and monitored independently to bring them into balance and to a level of wellness acceptable to the patient.
Some people take T4 - Levothyroxine : some people take a T3 /T4 combination tablet with a fixed ratio of T3/T4 : some people take T3 and T4 independently from each other thereby getting a more exacting dose : some people take T3 only : some people take the thyroid hormone replacement that was successfully used for over 100 years prior to Big Pharma and Levothyroxine being available - this is called Natural Desiccated Thyroid and contains all the same known thyroid hormones namely T1,T2,T3,T4 and calcitonin and is a pigs thyroid gland dried down and ground into tablets called grains.
If you need T3 it will be as a National Health patient - this has nothing to do with the Government but procurement of medicines from within the National Health Service. NDT is also available on the NHS on a " named patient only prescription ":
Yes please lau99 , I live in Devon and had a not so great experience with my first Endo so travel quite far to another one that has prescribed me T3. It's helping and so I'm keen to continue with it, but very interested to hear about a local specialist!
Pleased your meeting went well. Unfortunately mine didnt which was several years ago now. Im in Exeter and saw AB (clinical lead) who took my son off a trial of levo saying it didnt work for him even though his results were fine. She took him off and six weeks later back up!. She tried to blame it on him being special needs and not having job (I have this in writing!). The doc took him off as per her letter so we got a second opinion out of area and within 5 minutes we were told he had Hashimotos thyroiditis just like me!
I have since started him on NDT as dont feel levo is working for him.
In my case I was prescribed T3 by private endo but have to get from Germany as GP eont prescribe. AB in Exeter would only prescribe 10mcg liothyronine which of course is not enough. She was the one who set that precedent in Devon and told me it was due to cost!
I think your doctor is prescribing you more levo because he has probably been told he cannot prescribe T3 due to cost and his hands are tied. My private endo also sees me on NHS but I have to get private script via private phonecall! He aldo told me in no uncertain terms he cannot tell any doctor what to prescribde so he has been well and truly "nobbled". I have also seen minutes of a meeting back in 2017 where he was warned not to prescribe T3 as it is a 'red' traffic light in Somerset. I know some pharmscists/docs have been systematically been phoning round patients to try and stop their NHS scripts so there is next to no chance of me or others getting it on the NHS. Its absolutely scandalous and unfair, and even though the T3 debacle went to House of Lords we are still no further forward, if anything we are now even in a worse position due to COVID-19 adding to the problem, sorry to say!
I am very concerned that the powers that be are desperately trying to stop our sources of NDT/T3 and that eventually we will be left with the dreaded levo, or even worse no medications at all. Its not like me to give up fighting or to be pessimistic but at the moment I do not feel very optimistic about it all. I have seen several cases on ITT Facebook page where patients have written in saying their pharmacist or GP has phoned to try and stop their T3 script and they are using dreadful bullying tactics to try and remove them. Wish there was more we could do to stop this nonsense!
If it is not Exeter please could you PM me. I have to travel to WSM and might not be able to in future.
Really sorry to hear about your negative experience I've had my own share at RDE, it's just awful how some doctors can treat us. Will send a PM right away x
Re NDT being withdrawn¬ One of Thyroiduk's advisers (now deceased through an accident) wrote to the appropropriate Organisation and every year for three years asked for a response. They never did. I have no idea why anyone in this Organisation calls themselves doctors (as doctors are supposed to ease pain etc on people who're struggling). I was brought up - like many of us - not to tell lies.
With the rise in cost of T3 - what a beautiful excuse to also withdraw this essential hormone replacement for many. Even a T4/T3 will resolve many patient's unpleasant symptoms.
NDT has been given to patients since 1892 (in different forms) and it saved many people from a horrible death. No blood tests but the skill of the doctors who recognised hypo conditions.
So we have gone from the medical professionals prescribing either NDT, T4/T3, or T3 alone to levo alone.
If someone is lucky to find an Endocrinologist who will prescribe T3 they're fortunate.
If your endo is willing to prescribe NHS T3 please take it. The more people successfully using it then the more difficult it will be for anyone to take it away.
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