Is T3 back available on the NHS? I’ve been self medicating for a year now on T3 only. My Endo has just said he can’t look after me anymore unless I buy the licensed T3 in the UK for £258 for 30 20mg, I’m on just over 30mg. Due to hospital not wanting to have any liability not his decision as he said it’s morally wrong!
I can’t afford that! But if it’s now available on the NHS then he could prescribe it for me. He said he has 7 patients on T3, 3 are buying it and 4 including myself can’t afford to so have to source it abroad.
If he can prescribe it then I’m on the phone to him tomorrow! Please can someone clarify this? Thanks
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MissFG
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You could pay for the DIO2 gene test, costs around £160 privately. I did that, it was positive, and it swayed the endo to continue prescribing T3 as the results state something like 'inability to convert T4 into T3'. If you want more info, please let me know.
Thanks I would be interested pls! Although my Endo knows I don’t convert from blood tests and wants to support me it’s the hospital stopping him. But any help would be appreciated
If you do decide to go ahead with the private genetic test which is saliva only and not blood, you would need to phone or email Regenerus as they have a myriad of thyroid gene tests. They are helpful & friendly. It's the DIO2 (three letters & one number). It costs around £160. This price includes the legally required counselling. This is because some genetic test results can be traumatic & life changing, but our DIO2 test isn’t really. You need to request that Regenerus supplies the counsellor as you don't want any information going to any of your doctors. The Regenerus counsellor phoned me with my result and talked for about half an hour.
Heterozygous = one parent, homozygous = both parents
Once you have paid and received the Regenerus test, remember NOT to write any doctor’s details on that form, or the results may get sent there. Leave that question blank or write “Regenerus” regarding the results. I phoned them about this and they told me to leave it blank. You are in fact paying an extra £50 or so, so that Regenerus can provide their counsellor.
You can have the result sent to your doctor if you wish. He/she most likely won't be able to understand it. It would save you about £50 as Regenerus adds about that much to get their counsellor to do the follow up counselling on the genetic test, which is a legal requirement. It means your doctor will have to do the counselling, which they probably won't know how to do it. It seems that everyone on this forum pays to keep the results away from their doctor or endo as we want to know the results and then use them to our advantage. By the time we get to the point of having to pay for a private genetic test, we don't have any trust in our GP or endo.
Your GP/endo could and should prescribe due to clinical need and can ignore local CCG directive even if it says Liothyronine not allowed in any circumstances in your area.
It is not a blacklisted medication.
However .....how many endo's are prepared to prescribe against local guidelines, as that could put their own employment at risk.
Apparently .....The only way the CCGs can refuse to pay for a drug prescribed by a GP in the UK is if that drug has been blacklisted by the DOH.
In the case of liothyronine, if a GP writes a prescription for it the CCG have to pay the cost of the drug that has been dispensed by the pharmacist. The pharmacist will put in a claim for dispensing the licensed product and CCG will have to pay. CCG rules are guidance for GPs not directives the final arbiter is the DOH.
Unbelievably NHS England said, at London meeting that local CCG's do NOT have to follow NHS England guidelines.
Can you find out what your local CCG policy is.
Eg Oxfordshire allow Liothyronine under endocrinologist care
I was told around 6-8 months go by my Endo that the whole of South Yorkshire had red lighted T3 being prescribed so I know it’s not permitted.
My only concern with the DIO2 gene test is that I converted a small amount. To get within low range of FT3 on levo alone my FT4 was over range. So I did convert but not enough to feel well or lead a somewhat normal life.
I have since been diagnosed with a rare muscle disease and struggling tolerating introducing immune suppressants. So I just feel at a loss as I’m sure one disease can trigger a flare in the other. So need to keep my thyroid under control. It’s been unstable until recently.
May I please say to you, I have discovered since August 2017, that we truly are what we eat. I recognise your desperation, I had it for around three decades. Since August I have been eating NO grains whatsoever, that's because they are a form of 'grass'; we are not cows, and humans have a problem digesting it. Cows have three stomachs to digest grass. So not even one piece of toast. Stop eating as much sugar as possible, remembering that fruit contains a lot of sugar; bananas are full of it, so only about one piece of fruit a day. Definitely NO ready meals or McD or fast food; everything must be pure. Cut out ALL carbohydrates, so no rice, only a very small amount of potatoes (either white or sweet).
Our brain is made of around 80% fat, therefore you must ADD good fats in order to function properly. The advice we were given to eat a low fat diet, in my view, has caused a lot of depression in the population. No doubt the pharmaceutical co's put that out so they could sell more anti-depressants (?)
Recommended to eat - full fat milk, cream, real butter (+ melted over veg), olive oil, cheese, cream cheese, eggs, meat including bacon (not sausages), oily fish (tinned mackerel is my favourite), white fish, plain bio yoghurt, all vegetables (I make veg soup with a blender), all salad items, avocados, nuts (not salted or roasted), beans (I buy tins of mixed beans & baked beans from supermarket & drain off liquid), tinned prunes (delicious with cream!). There are other foods that are ok – eg pulses, sauerkraut (which I’ve googled how to make & about to try making it), Hellmans mayonnaise, Bovril, cocoa powder (not drinking chocolate - it's 70% sugar) in warm milk, Lindt high cocoa chocolate slab, Not meant to eat potatoes as they are high carb (I have a little), also a small amount of sweet potato but all potatoes are carbohydrates which this diet forbids.
Example of one day’s meals & snacks ----
Breakfast : Hard boiled egg with cream cheese or Bacon & egg
Morning snack : Mug of warmed full fat milk & half an apple or Home made vegetable soup
Lunch : Tinned mackerel with any salad items (+ mayo)
or Handful of nuts + cottage cheese with tomatoes or any salad item
Afternoon snack : Bio yoghurt with cream mixed in + 3 prunes or a few defrosted raspberries
Supper : Chicken or any meat with mixture of vegetables with melted butter over veg
Eating this way has absolutely transformed my life since about September.
Thank you but I’ve been on the Keto diet since April and although have seen a huge difference my immune system is still attacking not just my thyroid but my organs especially my lungs and muscles.
I’m on quite a lot of drugs and getting help but I can only do so much to help myself. I have to rely on the professionals too and trust them. I’ve no other option but I appreciate your post and do recommend either the Keto or paleo diets for all autoimmune diseases
Both reduce inflammation in the body. They’re not about losing weight although they do help. They are about lifestyle changes and eating clean to heal your body from within. So no gluten or grains and low carb as carbs are in veg etc which is why they’re ideal for ppl suffering with autoimmune diseases. Basically very similar to your diet. From the look of it your already doing the paleo 👍🏼
Hi again MissFG - a member 'liked' one of my replies so I have been brought back to your Post. I hope you have been learning as I have been. It was the Paleo Diet that I started eating in late August 2017... I had never heard of it, was advised to eat that way but not told it was Paleo. Now I have moved on as I was still getting various symptoms. Over the last month, I have cut out cow dairy replacing it with goats & taking high dose Omega 3 supplements. I make Bone Broth which is easy to make (PM me if you want more info), I have started to make my own Kefir which I kept putting off but have now done it with the help of another forum member. I've also absolutely stopped drinking any tap water - only good quality bottled water even in tea & the bone broth.
I've watched dozens of hours of videos - I have just finished watching "Broken Brain", which explains how our food & water are poisoning us for a whole variety of reasons. About how Hashimoto's is inflammation in the body AND the brain, where the inflammation moves up from the damaged gut into the brain.... Encephalopathy Hashimoto's. Hence I'm doing everything in my power to heal my brain inflammation.
I've also started on more supplements - all the B vitamins are vital for brain function & I've discovered that even a good quality Multi B supplement is not enough B vitamins for my needs. So I've bought individual tubs of B1, B2, B3 & B6. The fat soluble vitamins are A, D, E and K; the water soluble vitamins are B and C. So B vitamins can't be overdosed as they come away in urine if too much for the body. For example, Izabella Wentz advises 600mg a day of vitamin B1; & 400mg a day of vitamin B3. Also she advises that Selenium is absolutely vital for Hashi sufferers.
She states : "Studies have been done to test the minimal dose of selenium for TPO antibody reduction, and that dose was established to be 200 mcg daily, even a 100 mcg dose did not produce a statistically significant TPO antibody reduction."
Im glad you researched your diet. As I said you were already eating along those guidelines. I’m actually now on the Paleo Autoimmune Protocol. So besides no gluten or grains I supplement as recommended and also make my own bone broth.
Basically it’s all about healing from within and diet has a huge effect on our bodies and immune systems. We all need to find what works for us and I hope your feeling better for it as I am
Could I ask what brand of water you buy? And do you boil your teas etc in abnormal kettle? I’m just curious about the metals as I’m changing to glass for my cookware. Thanks. Ebony
Buying bottled water to use for everything is new for me - still learning. I've been trying to buy Highland Spring Water but I truly don't know what's best. Kettle - yes I have still been using a kettle. But I do know glass is best. Early days for me still. I've still got mercury fillings in my teeth & cannot afford to have them changed.
Thank you. High Spring is very tinny in taste for me. I have a Brita filter which I use for everything but my kettle still fits up. I drink a lot of teas. Spring water tastes the best imho. I love Voss but it’s expensive.
I have one of the old stove kettles and tea tastes better but never know which metals things are made of 😒
I think I’ll start my own post as I hate hijacking others. Apologies MissFG!
Just a thought but the reason I avoid tap water is to avoid the fluoride. When there is excess of fluoride in the body it can interfere with the function of the thyroid gland. So I also use fluoride free toothpaste which is recommended if you have any thyroid issues
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