Hi
I am trying to get a new Group together in Devon to fight the Devon CCG regarding their policy on T3 and the fact that patients are being denied it due to cost and not clinical need! They have been very crafty by supposedly allowing 20mcg of T3, but in reality there are very few patients in Devon who are accepted for this.In fact the clinical lead in Exeter only allows 20mcg!
if snyone is interested in joining, please pm me.
Many thanks
JsneCxxx😎
I hope you get some members responding to your post if they live within your area. The more people who join the stronger we become in trying to change attitudes of the medical professionals.
I live in Devon and am T3 only. Moved back to UK last September after 15 years in Greece where T3 was not the problem it is here. More than happy to lend a hand. There are two members on the Forum who have spent two years battling the Norfolk CCG - they would be just the best to learn from ... as they recently succeeded !
Thanks Marz.
Dont know which part of Devon you are in? Yes I know about Norfolk. I belong to ITT and intend sending their document to the Chair of NHS Devon Clinical Commissioning Group. I had a paper pushed through door called Devon Together, you might have had the same. He states that the NHS is here for us, as always. Cheeky sod. He may regret using those words. He is also a GP called Dr Paul Johnson. Never heard of him. No doubt he gets two fat pay checks every month?!
I am just collecting names at the moment but here is my email address. Im in Exeter.
Im hoping it will be a joint venture. If you could tell me the isdues you have experienced in Devon. Am wanting to collect as many stories as possible!
I just hope that Waverley will issue scripts this time round!
Thank you.
JaneC😎
I live in Devon too, I was diagnosed a mere 6 months ago and on T4 only but happy to lend support - not feeling benefits from my current treatment so its possible I may need T3 too at some point!
Thanks Malchant
Dont know which part of Devon you are in? I belong to ITT and intend sending their document to the Chair of NHS Devon Clinical Commissioning Group. I had a paper pushed through door called Devon Together, you might have had the same. He states that the NHS is here for us, as always. Cheeky sod. He may regret using those words. He is also a GP called Dr Paul Johnson. Never heard of him. No doubt he gets two fat pay checks every month?!
I am just collecting names at the moment but please pm me if you are interested. Im in Exeter.
Im hoping it will be a jpint venture. If you could tell me the issues you have experienced in Devon. Am wanting to collect as many stories as possible!
I just hope that Waverley will issue scripts this time round.
Thank you
JaneCx😎
Hi there Jane
I am in Devon. Would like to be in the loop!
Hi Topsy33
Thanks for responding. Do you have private T3. Could you send me your story to me via pm?
Which area of Devon are you in?
Just taking names for now until we work out how to run this Group particularly with COVID-19 in the mix, but any help will be much appreciated!
Thanks
Janexx😎
Hi Topsy33
Thanks for responding. Do you have private T3. Could you send me your story to me via PM.
Just taking names for now until we work out how to run this Group particularly with COVID-19 in the mix, but any help will be much appreciated!
Thanks
Janexx😎
Hi
I’ve been on thyroxine for 27 years. I’ve never had anything other than the routine blood test. I would like to know more about T3 and be involved.
Thanks for responding ShakeyCat.
Theres alot to learn about T3 and NDT (natural dessicated thyroid). If you dont already belong to ITT Thyroid FB Group there is lots of info on their and also T3 thyroid FB Group. Not everybody needs T3 but some do. I am just taking names at present but you could send your story to me via email as a starting point. Not sure how it will run yet with COVID-19 in the mix so just taking names/stories for now.
Here is my email:
jane.chapple60@talktalk.net
Janexx😎
Hi I live in Devon too - would like to help if possible - I have been given T3 by endocrinologist at torbay
Thanks Laura
I am just collecting names/stories at present but will be happy to have your help. Which endo did you see please? Im glad you got it. Are you in Torbay? If you would like you can email me with any info/story and issues with Devon CCG.
My email is
jane.chapple60@talktalk.net
Many thanks
Janexx😎
What do you actually mean by "get a new group" ??
I am in Devon and just started on T3+T4 after telephone consultation at Derriford hospital.
Have you actually looked at openprescribing.net/ to see what is being prescribed?
I was actually quite encouraged by the analysis of what is happening in Devon, regardless of CCG policy
Hi bambuko
Thanks for responding. We have a lot of people who live in Devon (and other areas) who are having their T3 removed. Pharmacists and GPs phoning patients to say that they cannot have it anymore. Its all down to cost and not clinical need unfortunately. I have been turned sown twice by Devon CCG too.
Thanks for the info. Do you get T3 on NHS and if you dont mind my asking how much and by which consultant?
Devon do offer 20mcg but the consultant cocncerned seems to only offer 10 and never titrates the dose, which I believe is due to cost. If you do know of others in Devon who are getting it, I would be pleased ro know also.
Regards
JaneCx😎
As far as I understood T3 cannot be withdrawn without Endo assesment,
look at NICE guidance etc.
Yes, I am getting it on NHS (started on 10mcg, to be reviewed in a couple of month).
No names on the forum, and anyway it wouldn't help, since it is a pot luck which consultant you get.
There is of course a "list" of known "sympathetic" consultants you can get
No, I do not know anybody else getting it.
It was only thanks to this forum, that I have managed to get it 👍
thank you again to all the knowledgable people here!
p.s.
I am still unclear about the "group"?
can you elaborate, please
Thanks bambuko
Lots of patients in Devon and elsewhere are having their T3 withdrawn despite the fact they have already seen the endo. GPs and pharmacists are actually phoning round patients saying they cant have script anymore and GPs and pharmacists are phoning around to try and stop it.
The idea of the Group is to get patients scripts reinstated and to get those who have been refused already due to cost, agreed. Wavereley have just had their liothryonine graded as a 'green traffic light' but Devon have been crafty by offering 20mcg, so its not totally banned. The consultant in Exeter however will only offer the very lowest amount possible in most cases which is 10mcg.
I have only just sent this message out now to see how many people are interested
in becoming part of a Group in Devon.
Thanls
JaneCx😎
pulsetoday.co.uk/news/clini...
Thanks bambuko
I already knew about that but GPs are ignoring it unfortunately. They are being nobbled by CCGs even though they say they dont interfere in medication that GP issues. I have even seen evidence from a meeting that took place in Somerset where consultant was told not to prescribe liothyronine as it was a 'red' traffic light.
JaneCx😎
Hi Jane, I live in Braunton north Devon. I am on 40 mgm of T3, I was on 60mgm but consultant at exiter said if was 20 he would give me 60 mgm but because I am 70 he will only give me 40. I was on T4 for many years and never felt well on it. T3 was a revalation. I have bought some T3 to be able to keep up to 60mgm. I get the impression that consultans are afraid of anything going wrong and their own reputation. I have seen consultants in Barnstaple and exiter, both talking the same talk. Best of look forming the devon group
Nigel
Thanks Nigel
Yes they have all been nobbled Im afraid. CCGs say they dont interfere in decision making, but in reality they do. Its all down to cost and not clinical need. I have been turned down twice and live in Exeter. Those who do get it seem to have a GP who takes no notice of CCG but thzt is rare. The pharmacists/GPs are phoning round and telling patients they can no longer keep their script. Its disgraceful.Devon actually agree 20mcg but only isxue 10mcg. They have been very crafty here as they hsvent actually banned it, so it wont be easy fighing them as the endocrinologist in Exeter wields a lot of power and is very rude to paients!
Your consultants are being discriminatory re age! How long ago did you get your T3 prescribed on NHS? They may not prescribe so easily now. If a pharmacist phones you, be warned!
Out of interest where do you get your T3 from?
Regards
Jane😎
Hi Nigel
I have now set up my new group which is called
The New Devon (UK) Thyroid Support Group. You need to add me as a friend on your FB page of you have one. You can find me as Jane Chapple (Exeter), then I can invite you. Its still in early stages!
Thanks
Jane😎
Hi bambuko
There are different groups all over the country. I meant I just wanted to start one here. Getting or not getting T3 seems to be a post code lottery. For instance you can get it in West Devon, but I cant get it in Exeter. Im very pleased you managed to get yours. Was it a telephone referral? How much T3 were you prescribed, if you dont mind my asking? What I want to achieve with this group in Devon is for patients to be treated fairly and for T3 to be prescribed at whatever dose the patient needs, not what dose the endo/GP thinks they can afford to offer, and for it to be based on clinical need and not cost. The endo in Exeter will only prescribe 10mcg even though they offer 20mcg as maximum. They have been very crafty here because they havent actually banned T3 like they have in other areas of the Country.
Thank you.
JaneC😎
No, it wasn't a phone referral.
It was a letter from my GP referring me to an endo (at my request - no problem at all).
With Referral Services, I had no problem at all with requesting specific consultant and hospital (actually in Cornwall rather than Devon...)
Waiting time was within 18 weeks limit.
Consultation was changed to a phone one due to Covid.
Didn't talk to actual chap I wanted but one of his team I guess.
Presented with test results (both NHS and private) he has agreed that I would likely benefit from T3+T4 rather than just T4 and started me on 10 mcg to be reviewed after three month (as mentioned in my previous reply).
It has taken long time, but with the help of knowledgeable people here and thyroiduk.org/ (great organisation) I am making progress.
I agree with TaraJR that you shouldn't go "...with all guns blazing, approach them on a professional level, and try to cut out emotive words from correspondence with them. Keep to the facts - they should say it all..."
Great to see another local group looks like it's starting up. I'm one half of the Norfolk pair who have fought (sorry had discussions with) our CCG for 3 years. It can be done!
edp24.co.uk/news/health/t3-...
I'd advise NOT going in with all guns blazing, approach them on a professional level, and try to cut out emotive words from correspondence with them. Keep to the facts - they should say it all. Good luck, go for it!
Hi Tara
I am still trying to set up group. This is a completely new thing for me. I was wondering if you had any ideas about how to approach it as in Devon CCG do provide T3 but max 20mcg, and usually 10mcg only. Endo there wields alot of power and is chair of SW Peninsula Group. She is definitely the one in charge, but it is my surgery who wont provide NHS script.
I am trying to think up suitable welcoome paragraph but have no idea where to start. I have never set up this type of thing before. Also trying to get admin to help me is going to be a bit of a challange I think as one person already in Exeter is unable to due to other commitments which is fair enough. I sill not be able to manage it all on my own. Any thoughts would be much appreciated. I did think it wouldnt necessarily be about T3, but levo and NDT and even those who need treatment but not getting it. Also asking for personal stories possibly?
Thank you
Janex😎
JaneChapple, Presumably you have already been in contact with Thyroid UK to ask for help on this, but if not, do email Lyn Mynott on enquiries@thyroiduk.org
No Ichavent. Thanks I will email Lyn for advice as I have never set up a group on FB before!
Thank you!
Janexx😎😥
Thanks Tara
I had a Devon Together paper shoved through my door. He is called Dr Paul Johnson and is Clinical Chair of NHS Devon Clinical Commissioning Group. He said
I am extremely proud that Devon has led the way with innovations such as on-line consultations with GPs and hospital teams. They have broken down barriers and set new standards that are hear to stay because they improve patient care. Your NHS is here for you as always!
I am going to use his sords but would appreciate help with letter.
Devon has been crafty in supposedly allowing 20mcg but in reality Ive discovered its only 10mcg. I know the clinical lead and xhe is heartless and cruel.
Someone else on here says they are heartened by what is happening
prescribing wise in Devon and shared this link.
openprescribing.net/
Im not sure it will be so easy in view of Devon stance and now that COVID-19 is here face to face meetings.
I gather Waverley was a green traffic light before but didnt issue one script. Lets hope they do this time. As above they do like to talk the talk, but is it just empty words?! Im not being negative but have heard so many dreadful stories going around. Im going to need a lot of help with this but fingers crossed.
Thank you.
Jane😎
I am in Bideford. When we signed up with new GP last September the Pharmacist from the surgery phoned to discuss our medicine. Hubby was 80 and I was 73 - she was surprised we only took T3 ! I was told they did not prescribe T3. GP more than happy with us buying on-line and self-treating.
I think the new stance is all about cooking the books for the next sell-off. Our confidential records are now elsewhere as all those naughty boys in London are in a rush to complete the Ask Alexa for the NHS. Hence all the latest scaremongering .... 😷 ...it's not quite ready !
Hi Marz
I am still collecting names for this new group. Just wondered if you would be interested in becoming a moderator as you seem to have an awful lot of knowledge. Obviously I will understand if you are already overloaded with this group.
I havent set up on FB yet and have never done anything like this before so any advice would be greatly appreciated!
Take care
Jane
Am happy to support - but I am awaiting cataract surgery and have no idea when I will be back to fully functioning ! So will have to decline - sorry !
Oh sorry to hear that Marz. I had my eyes done a few years ago. It was similar to a cataract op but I didnt have cataracts. It enabled me to see so much better, so good luck with it!
By the way when Im responding to someone in personal box I keep getting the report box come up ehich means I cant see most of the typing and I have to keep closing it down. Any ideas what is causing this?
Thanks
Janexx😎
Sorry I don't know how to solve your problem. I would message HU X
Hi Marz
Was just thinking about you and wondering how your eyecop went?
Hope all is well. The Devon group is going well and I have 25 members, some feom here too.
Best wishes
Janexx😎
My op went well thanks. Stayed in an hotel before and after op. Glad your FB group is growing - will take a look. Keep up the good work 🌻
Good grief Marz. They are definitely being ageist here. They always start older people on 25mcg levo and they never end up on a high enough dose, then if they bother to check their TSH when they end up in hospital because of core morbidities, the consultant wonders why they are so ill. If they see it is say 4.9 as far as they are concerned it is in range, and nothing to worry about! They rarely do a full TFT to include antibodies, check their Vitamin D or B12 levels. They dont know about optimal vitamins! I used to type loads of letters about this. Half the patients wouldnt need to be in hospital if they checked their thyroid properly and didnt leave them under-medicated! They now have written in the RMOC Guidance that mental patients need to be reviewed by psychiatrist and if they are on T3 to have it replaced with T4. For God sake T3 is needed for the brain and in fact the heart and every other organ in the body?! Its a completely different hormone and is not the same as T3, as lots of these so-called professionals seem to think. I do really dispair. No wonder mental health is getting worse and patients are being kept so ill because of their sheer ignorance and incompetence. Its really disgraceful, and I honestly dont know where it will all end!
Are you still getting yours on NHS or did they remove it?
Keep in touch and keep safe.
JaneCxx😣😎
I was in Greece until last September - so never had NHS T3. I am on 50mcg - hubby a little less.
Good luck with this! I'm in Cornwall (right on the Devon/Cornwall border) so although I'm not in your target catchment area and am not on T3, I'd be more than happy to lend my support. My referring hospital is Derriford and I have not had any dealings with the hospital endo's directly (my GP forwarded a letter I had sent regarding my path of treatment to a Derriford endo who disagreed with everything I said).
Thanks so much for responding. The more I hear from people the more I realise this is just the tip of the iceberg!
Are you on any meds at all?
Thanks I will keep your details if thats ok with you.
Janexx😎
I live in Devon and would be interested in joining your group.
I hope you are successful.
Hi bellehelen
Thanks for rexponding. I will keep your details if thats ok. Am just taking names for now and would bec nterested to hear your story.
My email is jane.chapple60@talktalk.net. if you have facebook you can contact m via messenger (JaneC).
Many thanks
JaneCx😎
HellovBellehelen
I have now set up the new grpup on FB. It is called The New Devon (UK) Thyroid Support Group. I gather I need to be your friend on FB in order to invite you! My profile name is Jane Chspple and Im from Exeter. Please feel free to join and if youcknow of any others in Devon who might be inteested, please mention this group. They so not have to be on any particular medication in order to join.
I hope tou are well.
Many thanks
Jane😎
Thank you Jane. I will join and let's hope we make some progress. 😊
I live in Devon am on levothyroxine 100mg. Have done a lot of reading about the working of the Thryoid. When you get told you need treatment you are given the tablets told to come for a blood test once a year. You don't get told when to take your tablets and that other medication can affect it. I know take vitamins and experiment with my diet. I hope your group gets lots of support. Am 67 been taking levothyroxine for27 yrs.
Hi Tiptree
You can still join the group if you are on levothyroxine. Some patients dont do well on it and need T4/T3 or T3 or even NDT (natural dessicated thyroid). NDT used to be available on NHS until Big Pharma introduced levothyroxine, which was introduced as the gold standard with no trials! Hopefully you have been one of the lucky ones and do well on it. Sometimes its just the case that the doc wont put people on higher doses especially if they are elderly. Im 65. Ive discovered that thyroid is a very complicated business, and its not just the case of sending patients away with a pill and texting only TSH once a year without doing full TFT testing, ie T4, T3, TPO, tgab.
Im glad you are taking vitamins as docs oftdn wont check these either.
Let me know if you would like to join. I am just taking names for now.
Thanks for contacting me.
Take care and keep safe!
Janexxx😎
Hi Tiptree
Do feel free to join my group. It is called The New Devon (UK) Thyroid Support Group but you will need to add me as a friend on FB. My profile is Jane Chapple.
Hope you are well.
Thanks
Jane😎
@pennyannie
I’m in Exeter but only on levo. Not tried to get T3 as can’t even get to see an endo as results within range. Seeing a private guy now. Long story.
Trying to tag pennyannie as she will have a story for you @pennyannie
Hi Cazmania
I have now set up my new FB Group. Its called The New Devon (UK) Thyroid Support Group. I need you tocadd me on your FB account assuming you have one, so I can invite you. Its a general discussion group about thyroid so youcare more than welcome to join if you want. I am in Wreford's Lane in Exeter. Where abouts arecyou?
I didnt here from @pennyannie
Many thanks
Janexx😎
Joined! I messaged @Pennyannie too 😀
Hey Caz - can you try tagging me again, just to see if I " go blue " and this gizmo works for me ?
Thank you :
@pennyannie
@Pennyannie it doesn’t look like it’s doing it from my end either!
Might be Cos I’m doing it on a mobile phone? Maybe on a laptop it would work
Thanks for trying again - I did get notified - even though I didn't go blue -
No idea, it shouldn't make a difference whatever gizmo you're on, surely :
Anyway apologies for the first mishap and my not responding sooner :
Could be " I simply just forgot " - whether turning blue or not !!!!
Hey there,
Don't know why I wasn't tagged Caz : though should'nt this be in Blue ?
Maybe I've lost my colour along with my thyroid !!!!
Thanks Caz
I have tou as member now. Am still in course of putting things on so it will be a couple of weeks at least before its up and running properly, its a whole new learning for me!
Jane😎
Hi Pennyannie
Please feel free to join The New Devon (IK) Thyroid Support Group which I have now started. You need to add me as a friend on your FB page so I can invite you.
You will find me under Jane Chapple and I am in Exeter.
Many thanks
Jane😎
Jane, I'm actually in Cornwall and I'm not on Facebook-
I've gave up a couple of years ago and am now self medicating on NDT :
I'm doing ok but can't afford to exacerbate my health again fighting the system :
but thank you for the invite.
pennyannie
Hey there, I seem to have my " colour " back - thank you for colouring me in !!!
I hear it's very theraputic :
When you type @ and the name it will pop up - click and it appears in blue !!
You can still join if results are normal and not on anything.
The more the merrier! Thanks!
Janexx😕
Hi, I'm local and definitely want to join. Will pm you later
Hi Paddleperson
That's great.
Here is the link. What is your real name so I know where you have come from?
facebook.com/groups/1035323...
Many thanks
Jane😎
Hello I have sent a request to join the facebook group. I was started on Levothyroxine in April and my health has not improved significantly. I was really upset when I found the Devon CCG papers on prescription of T3 as I realised it was going to be a struggle to get a trial of it. I live in Bishopsteignton.
Hello Discodival
Yes it is very upsetting indeed. The person behind this nonsense is Antonia Brooke, clinical lead and she is the one who set the T3 level at 10mcg, so officially they have not actually banned it, I set up the group in the hope that we can eventually challenge her and the team but that is going to be a while away yet. She is keepiing many patients very ill sadly. For now we are just trying to support andchelp each other as best we can.
Thanks for joing the group. We now have 75 members so that proves how poorly people in Exeter and Devon are being treated (or not). Please feel free ro pass onto other family and friends who may have thyroid isxues. We are allowing people in from Cornwall and Somerset borders.
Best wishes
Janexx😎
Hi Jane, I have just signed up for your Devon Facebook group but am not too good at using Facebook. I live near Cullompton and am trying to get my GP practice to give me an appointment and to take my blood tests and my thyroid condition seriously. They will ring me tomorrow so I am trying to research which endo I would like to be referred to if they are unhappy to test and consider T3 themselves. Help would be welcome. It has been weeks since I tested myself privately and I still cannot get to talk to my GP. Am considering Barnstaple or Taunton or Torbay or Bristol!
HI Annib1
Sorry only just saw this. I will message you on FB with some info.
Regards
Janexx😣😎
Sorry. Have only just seen this. Not sure how to access my facebook messages. I have decided to make an appointment with private GP in Bristol who has Hashimotos herself. Where can i read about Antonia Brooke and the Devon CCG?
Hi Ann
Im sorry you cant access your messsges. I will try and add you as a friend on FB so I can invite you to my group that way. Here is Antonia Brooke profile but I will message you about her. I hope you can see me on messenger. There is just a little zigzag type sign which directs you to messenger. Ill they and connect with you as Id love you to join the group! We now have 97 members all dissatisfied with thyroid treatment they are not getting from GP or endocrinologist.
nhs.uk/profiles/consultant/...
I have sent you a friend request on FB please could you, kindly confirm you have received it and read my message.
Regards
Jane Chapple😬😎
Hello Jane, can I join please? Brilliant idea! T3 40mcg reduced to 10mcg and Armour prescriptions stopped abruptly.Told in a letter written by a pharmacist on behalf of a doctor I have never had dealings with. Torbay.
Hi Anna
Sorry to hear about that. Dont agree with pharmacists dealimg with our meds! They have too much power and dont know our hidtory. I think your T3 has been reduced because of Devon CCG Policy of maximum of 10mcg and the are catching up on those who have more.?!They should be reducing gradually as per guidelines not in one full go! Here is the link for the group noe 119 members. Please feel free to post or just look through. Others have had their T3 reduced like you and will be interested in your story!
facebook.com/groups/1035323...
Take care
Janexxx🤓😒❤
I joined, thank you. I think drs might be hiding behind pharmacists. But pharmacists, too are advised that liothyronine and desiccated thyroid, if necessary, should continue to be prescribed.
So why arevthey phoning patients and telling rhem rhey cant have their script anymore? Its not right, they dont know our history. Its the CCGs in chsrge or in our case Antonia Brooke clinical lead at RD & E. So unfair you dont cut patients insulin in half or stop it altogether?!
Thanks for joining, the more the merrier. Dont see why we should take this lying down!
Best wishes
Janexxx🤓😒❤
Hi Jane,
It isn't right, it isn't in line with guidance. It is dangerous and even goes against MBA's and the GMC's advice, that tell drs that they can prescribe unlicensed meds (Armour) if there are no alternatives. That the patient's well-being is paramount. I have had loads of help from here, and the other groups, and template letters to be adapted. CCG Devon are nor applying the guidance. My gp, is not even applying CCG Devon's guidance. We are lucky. We have the means to fight this. But so many do not. This is a disgrace. Someone has suggested enlisting our MP, and ask them to take this to Lord Hunt, who has been fighting to change things. Ann
I totally agree Ann its so very wrong scandalousin fact. I have zent stuff to our MP Ben Bradshaw inthe pastbut all he does is pass it on.unfortunately and does not act. The only thing we could do is perhaps get a zoom meeting between some of us in the group who have had meds reduced or taken away or refused altogetjer (me) from Exeter and there area few of us. I might discuss it withmy other admin Linds Page when she is back from holiday next week. I have been sent a contract to sign by my GP surgery, re asking for T3 meds (long story!) not signing anything, they can take a hike! By the way there is another girl in the group from Paignton who had her NDT removed recently. . She runs a group called Louise's Thyroid Journey, might be worth contacting her?! We need to stick together and fight this nonsense, its gone on long enough!
BW
Janexxx🤓😒❤
Hi Jane, I've only just seen this. It's a subject very close to my heart and an exhausting battle. If you managed to get this group going I'm very interested in belonging to it. regards
Hi Thumbelina
Yes so amI. I did set up the group which now has 182 members. Its very sad that so many people still need our help in this day and age, but glad I set it up.
Here is the link
m.facebook.com/groups/10353...
Janexxx🤓❤
Group of Papers on Hashimoto's thyroiditis
New Endocrinologist - Dexa Scan and Thyroid Test in PM?
- hi im new to this group 
