I'd received the ominous text after a blood test (which was supposed to be for all the useful vits & mins etc turns out you don't get them if they were within range last year??? 🫤) so just TSH then!... "your blood test is showing that you are still overtreated we shall be contacting your Endo"
Email to Endo from GP....
I would be grateful for advice regarding this 55 year old lady's hypothyroidism treatment as she is under your care. I can see in your last letter, you recommended Levothyroxine 100mg daily and Liothyronine 10mg in the morning and 5mg in the evening. Her TSH remains suppressed at less than 0.05 and I would be grateful for your advice about amending her medications.
What is the relevance of this "this 55 year old lady's" is it code for something?.. 🤔😆
Is it just me?... why is the GP suggesting changes when she isn't trained in my treatment?? This one had commented on my TSH when another GP had seen the fT4 (triggered by the low TSH) result (55%) and given "satisfactory, no further action"
My response...
"Thank you for the message regarding my Thyroid results, it would seem that Dr **** actually saw the fT4 result which is nicely mid range, the addition of Liothyronine often causes a low TSH result rendering is useless... my treatment is based on my fT3 & 4 levels.
I'm very pleased to say that having been on this regime since last seeing Dr @@@@, I am much improved and have managed to gradually regain far more function than I have had since starting Levothyroxine some 5 years ago, my temperature, BP, RHR are all healthy with absolutely no signs or symptoms of over medication. Perhaps you could also forward this to Dr @@@@ and thank h** for h** marvellous life changing treatment"
Interesting that they want to change your dose but don't request a face to face first to see what an overmedicated wreck you are.... Dr'ing eh funny old game 🙄
It'll be a NO from me 😁
(Just posting it here to add it to my journey)
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I know you know - but it is so easy to make a slip if it had been a transcription rather than copy and paste.
Whilst it might be dismissed as an unimportant detail (if brought up in future), it is just as well prescriptions are nowadays based on click-on-a-button computer system. And medicines themselves are prepared doses not made to order. Otherwise we might see some frightening stuff coming out of pharmacies!
Well, if they supplied you with ‘Levothyroxine 100mg daily and Liothyronine 10mg in the morning and 5mg in the evening' you would have enough for yourself and a small proportion of the forum too! 😁.
Eeyore it’s outrageous but good that you are and can effectively advocate for yourself. Imagine the damage that Dr would do to someone who was not able to go head to head. 😱
Since seeing my NHS endo who prescribed T3 - I get sent a blood test form every 6 months, to have T Endo panel done at my local hospital - he then writes to GP and says the results are “nicely in range” and prescribing to continue. GP prescribes Levo and Endo sends me 3 monthly Lio ‘scripts. GP has never once questioned it. The Endo does give me the actual results on the phone.
Endo knows TSH is suppressed: has arranged a DEXA scan - as protocol - which was good . That result was sent to GP.
So my GP practice accepts that responsibility for thyroid prescribing and testing is with Endo and don’t question it.
If your GP believes they have this responsibility, then asking advice from the consultant is normal protocol. Does your GP issue both levo and lio ‘scripts? Maybe that’s the difference: my GP practice will not issue Lio ‘scripts.
There seems to be various ways they handle us, my Endo sends out blood requests and instructs the GP who actually prescribes and supplies both. I had to get a Dexa done privately as I didn't 'qualify' under NHS rules according to GP.... perhaps I should have approached my Endo though we agreed last time that I would take responsibility for low TSH 🤷♀️
It's a cliff hangar! I've no idea which way this will go... my starter dose with Endo put me back to bed for a month so I shan't be agreeing to any reduction
Definitely don’t agree to a reduction on the basis of a number versus wellbeing!
It really is a lottery how we get treated - I had 2 years of hell before getting diagnosed and then a further 2 years of worse hell until I saw a private Endo. I saw him for 16 years till he retired - then it was back to GP. Luckily I have now found an enlightened NHS Endo and - touch wood - it works. I dread him moving.
So much anxiety and worry suffered unnecessarily by so many of us. Do hope Endo manages the situation for you x
Thank you 🤗 they do seem keen to take away what works, like you say it has taken me years to get well so I shan't be backing down and hopefully educating as many medics as I can along the way... I'm the only prescription for Lio this surgery group provides and I think they want me gone! I'm terrible for their balance sheet 🤭
Well mine refused to prescribe mine without discussion! Luckily, Endo warned me that could happen and told me not to worry and that he would take responsibility for it. So I hit the jackpot this time!
Stick to your guns - I know you will! Crossing everything for you 😊
They have made it awkward at every opportunity... the last toe to toe was about their unwillingness to provide a correctly written prescription to name the lactose free brands which the independent pharmacist required. They huffed and puffed and then said they would dispense the correct brands as they wouldn't change the script (even though I very kindly showed them an example of a correctly written one 🤭)... first time trying they got it wrong, as guess what their pharmacist hadn't read the badly written script correctly 🤣
Thankfully I have enough knowledge (thanks to everyone here) and enough in stock that I can confidently go into battle with them and hopefully improve their service to others 🔔 🤼♀️
It’s everywhere tbh: have to check, double check and note everything in writing .
I recently spotted that a letter to my GP from the breast cancer clinic, cc’d to me, which referred to the wrong breast! I had to check my scars to convince myself it was wrong! I rang the clinic and nurse apologised and sent a revised letter to GP.
I once got an invite to a diabetic eye clinc - rang to say it was not for me and they insisted referral had come from GP. I had a devil of a job getting my record corrected - and I have never been diabetic.
My daughter is currently detained on a MHA section 3, after 4 weeks on a section 2. I keep getting paperwork addressed to a Mrs Green - which is NOT my name! No explanation for the mistake, am told it has been rectified - when it clearly hasn’t as it has just been used again.
You don’t just have to stand your ground, but manage every agency too, as their mistakes can be devastating and, sadly, fatal - which we read about every day. And you cannot trust ‘managers’ to take responsibility - shocking denials and self preserving cover ups are the norm. Apathy reigns.
It is v tough to keep battling - but don’t stop. Trust yourself above everyone.
Will say though that we have a fantastic local pharmacist - who keeps our whole community looked after - long hours, always packed - but unfailingly kind, helpful and attentive staff who go above and beyond for every customer. Credit due to them - I recently took them in a tub of ‘Heroes’ chocolates for loads of support they had given to my daughter - because that’s what they were compared to those who should have helped but didn't🙂 Dread any changes there.
Sadly such wise words, the scales have fallen from my eyes these last 5 years I now advocate to all that merrily say "Oh, I don't really understand my test results but it say satisfactory 😳)... so sweet about the pharmacy, I had the same experience with the local independent who obliged for over a year even though the script was incorrectly written but they have had a change of staff 😩... I'd always take them cakes if I went on a Friday, they are really having to pick up after all the others 😕
I’ve had wrong descriptions ie which side, problems, incorrect symptoms and lots more over and over on referrals and correspondence nhs. Cant even get my diagnosis correct on my records, no follow ups even when Consuktants request ahead. Nightmare!
yes TiggerMe this is what we all need to do stand up for what works for us NOT what the “numbers” say. 🤗🤗
The "XX yr old lady...." is standard format. I get copies of letters from more different medical departments than I care to mention but they all start like that.
Correspondence so often non personalised. Nicest are when the Consultant dictates his letters and report in front of you. They and you know if understood each other correctly and dictated accurately. Few do this from experience.
Seems to be the norm for GP’s to write to Endo’s for advice. Mine did this, didn’t expand on info (so no clear direction). Endo came back with go areas and try hrt 😲. Interesting that I received a text before that from gp saying Endo had declined my referral, then hospital confirmed I am on a waiting list. Has your surgery got an hrt specialist nurse?
No issue with the feedback to Endo but telling them how to proceed seemed to overstep the mark? With no face to face discussion with me about symptoms and working purely on TSH result...
What's 'go areas'?
No not much cop at HRT... I went to a private Menopause Clinic who told be what I needed and then passed the prescribing back to GP, which after the usual argy-bargy worked... they seem so resentful of people getting good treatment 🤷♀️
Now I am in the know I tend to encourage everyone in the village to be a little more pro-active 😁
It’s a darn cheek in my opinion and what is it costing? When it’s totally unnecessary it’s more that irritating when they refuse us t3 based on cost - utter hipocracy
Go areas? ..GP’s are…..Seems GP’s are passing some stuff down to their clinical nurses and also instead of referrals are writing to Consultants for advice rather than patient seeing a Consultant. God forbid they should actually see a patient! A lot of GP’s and Consultants can’t take nhs external knowledge (not all). Always saying how busy they are yet when go private they resent it. Makes no sense.
Nice little earner for consultants then doing the gps work at exhorbitant rates of pay - it should be stopped it’s wasteful. Use the money to allow us open access to our preferred thyroid hormone therapy rather than keeping us ill and them rich
Or it maybe that GP’s are applying a new practice by corresponding with Consultants for guidelines and paying less for that than they pay for a referral. Same as GP’s have rotas for patient telephone call appointments avoiding face to face where applicable.🤔. Not seeing a Consultant will massively keep their waiting lists and clinics down and look good for any nhs trust too, but not necessarily the best for patients.
Yes very good points made there. I wonder if it’s based on some American private insurance based system - wouldn’t surprise me. I suppose not treating thyroid patients and letting them suffer and die also improves their stats. Just disappear us. It’s medicine gone mad
what a huge waste of supposedly strapped for cash nhs resources! When will this silly nonsense stop? It’s all down to that tom fool Pearce costing us a fortune yet not restoring our health
I had one that started "this 71 year old assertive woman". I was 64 at the time but had told him he knew nothing about hypothyroidism!
I have never been offered a Dexa scan despite my TSH being 0.01 for a number of years. This bit of research may be useful to counter the "bones and heart" thing:-
Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
Cheeky beggar! It belies an appalling attitude to women and confirms your suspicions about his competence. If he was confident in his field why react in that pathetic manner?
I had a dexa scan and was self medicating on NDT. I came in the top 1% of the population for bone strength. My heart pains which were awful before diagnosis and got even worse on Levothyroxine, completely ceased on NDT. My TSH is always suppressed on NDT but it seems my bones are a tough as iron and my heart rather likes it too! According to that paper I should be fracturing bones left right and centre and entering heart attack country on a daily basis. I simply don’t believe all that rubbish I feel better and I am better - it’s a simple as that. Maybe the TSH can be more suppressed with NDT as they are only looking at Levothyroxine monotherapy - which really made me ill. I did break my ribs a couple of times whilst on it - thinking back, but alls been good on NDT.
Hi Cant comment on most of this but the 55 year old lady quote is totally normal. WHen referring patients anywhere we always state the age and gender of the patient. Its just to make sure they actually take note of who we are talking about, and that the computerised demographics match.
Thanks Louis... it seems to harp back to a previous age to us outsiders, we all assume the numbers identify us, as age and sex doesn't seem to limit things much? So my file will be found in that pile 🤣.... I thought we'd entered this new weird non binary age 😵... I've no idea what to call people these days
I've not seen either of these people for 9 months 🤷♀️
I see that changes have been made to my prescription of Levothyroxine that I do not agree with, as Dr ##### pointed out in her recent correspondence dated 12/12/2023 we agreed last time that quality of life is far more important than TSH level once Liothyronine is being combined, I have previously agreed to a dose reduction which had no effect on my TSH level and put me back to bed for a month and several more months to recover once dosage increased, as my fT4 result is mid range with absolutely no signs of over medication my BP 104/75 Resting Heart Rate 60 and Temperature 36.4
Please can you re-instate the Vencamil 100mcg (the combination you have prescribed would be Teva and contain mannitol and acacia which cause me gastric issues hence Vencamil is named)
I monitor my condition very closely, I'm making steady progress and feel well for the first time since starting my treatment for Hypothyroidism on my current regime, I am more than happy for you to check me over?
As Dr ##### commented "I may not wish to follow her advise" and this is the agreement we came to at the last review in May and these results do not suggest change is necessary.
Time to quote them NICE guidelines and take responsibility for your low TSH. Good luck!
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Thanks Jaydee, yes this was the agreement reached at the last review hence her comment about "I may not wish to follow her advice" which I thought was rather nicely done on her part to give a nod to my right, I suppose I'm going to go through this with every new GP's desk that it crosses.... three so far... hopefully they will all read and learn 😁
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