Has anyone had the same issue as me this week? I've had 3 private blood tests for private Consultant - July, Oct (to see if reducing T4 a possibility - nope!) and then January prior to appointment. GP surgery sent letters following appointments stating dosage of T4+T3. Then, after requesting repeat levo on GP app, get text to say I need thyroid test (only TSH+T4) to receive future levo! So off I pop to surgery with copies of consultant Endo's letters after I notice the last two are missing from my records+still told need their blood test!! I challenge this as I've had 3 in 6 months!! Said I could give them the blood results as all much if a muchness+TSH suppressed (has been for donkeys years as been on levo since 1982 when thyroid removed due to huge goitre hindering my breathing - tho GP said it was psychosomatic!) Surgery won't accept blood results from me (said, Chinese whispers and all that?!!!) but could my Consultant send results. Never had this nonsense before! I won't even go for an MOT with surgery as they'll start having hysterics about suppressed TSH! D o they ever read the medical notes - if anything like my medical notes on GP app, they're incorrect! Lord, give me strength!! How come they won't accept endo professor's word? They don't even read his letters properly +refer to him as "Dr"! I'm spitting nails at present!!
GP surgery insisting on new blood tests! - Thyroid UK
GP surgery insisting on new blood tests!
Its pretty normal for GP to want their own tests done, they are prescribing so for their records they need to do the tests.
Unfortunately, they can’t even get my Levo dose correct! My medical records are also incorrect regarding T3 dosage! Plus I pay for my T3 privately via private Endo so T3 blood test required but, of course, NHS GPs don’t request T3 blood test along with T4 and TSH! Tired of the nonsense! Even when NHS blood test results are available there is heeby jeebies due to suppressed TSH because my medical records are not read alongside test results! It’s clearly expressed (from NHS Endo) to ignore suppressed TSH!! I try to keep well clear of GPs! Don’t trust them with my thyroid health!!
same here my GP decreased my dose I went to private endo who said I was under prescribed and GP needs to increase dose my endo sent copy of letter to GP GP has completely ignored I’m being under prescribed by 50mcg daily. I don’t understand what is happening but it seems GPs do not want to listen to specialist advise. This seems to be a common issue with my he NHS.
Exactly the same here. Getting hold of enough levo should not be this hard....
Yes, mine said other results don't show on their system and if they got audited and didn't have tests on the system they could get in trouble for not having results to base them on.
“refer to him as "Dr"!”
Is calling someone Dr an insult over there across the pond ?
It is when my Endo is a professor of endocrinology and GPs, who know diddly squat about thyroid, are called “Dr”!
Only surgeons revert to ‘Mr’. Do you mean he should called Professor?
Yes! He is a professor and as well as seeing patients, prof at Oxford university! expert in hormones, pituitary disease, metabolic issues, thyroid, and obesity/weight.
Professor of Endocrinology, Oxford University. Head of the Department of Endocrinology at the Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill Hospital Oxford, until 2012. Research interests: pituitary tumours, acromegaly, adrenal disease, angiogenesis in endocrinology, genetics of osteoporosis, thyroid disease. Hormone Replacement Therapy for Women. Chair RCP Group on Weight and Health . Spokesperson on Obesity Royal College of Physicians. Published over 410 articles, edited different textbooks; Oxford Textbook of Endocrinology (3 editions), Clinical Endocrine Oncology (2 editions), Oxford Handbook of Endocrinology (4 editions). President European Federation of Endocrine Societies from 2001-2003. Chairman Society for Endocrinology 2006-2009. President American Pituitary Society. Lifetime Achievement Award, Pituitary Society (America) 2017. Academic Vice President Royal College of Physicians 2012-2015. Presented acclaimed documentary ‘The Fantastical World of Hormones’ on BBC4, 2016. Current Getting It Right First Time Endocrine Lead, NHS England, visiting and inspecting all endocrine departments in the UK (127) and doing a national report.
Think with these credentials he deserves his title of Professor!
I think he should maybe be called ‘Prince’ !
🤣
lol 🙏🏻
Yep, TSH only (0.05 for 3 years) every year and it always causes a flurry of interference, instant dose drop and threats before speaking with the Endo, rather than like you say just reading her last letter 🙄
Annual expense of private bloods Monday for all the useful things they won't test!
Seemingly I'm asking too much at the moment as requested testosterone only to be told "you haven't requested it for 6 months so its been cancelled" so I point out that a box lasts 30 weeks, I've pointed out to the pharmacist in the past it isn't a monthly repeat but she looks at me blankly as they seem unable to set it up correctly, their new year's message to all was "Do Not order meds until they are needed"!
10 days in and 3 attempts made, this seems to be an insurmountable issue to resolve 😵💫 surely it's just admin!!! Do you also have one of those surgeries that it takes 5 minutes to read all the A4 paper posters with Do's and Don'ts before you even get to the desk? 😱
Note made to request early in future! I think we could all suggest money saving ideas for our surgeries... starting by bothering to read even their inaccurate records before messing things up and then having to correct 😕
Well now you've just got me going again! Let it go, let it go 🧘♀️
You should request tostran next time. It lasts nine months with 1 pump every other day. No guesstimating needed of splitting 1 sachet between 8 days. So much less faff. I had to have testogel sachets once, never again
I thought Tostran is much stronger?
Works out similar as 1 pump contains 10 mg of testosterone. 1 sachet of testogel contains 40.5mg. 1 pump every other day works out roughly the same.
Testogel pump bottle and testavan are stronger preparations that I wouldn't choose to use.
The sooner it is licensed for women then pump bottles will give correct 5mg dose daily.
That would be handy, I assumed the pump dispensed dose would be much bigger if licensed for men when a dose is a whole sachet of Testogel? I seem to remember trying to have a conversation with the pharmacist when I first started on it, having bought the first box from the Menopause Clinic but she was still in shock she had to dispense it to a woman 🙄
tbh I tend to use a bigger blob on alternate days with the sachets
Tostran is the lowest strength pump bottle at 10mg per pump.
I had to except testogel sachets once, I found them messy and difficult to judge dose after the ease of tostran.
I'm a bit slapdash with it these days 🙃
Me too with mine, a sachet lasts 7 to 8 days and I don't bother too much about each daily dose.
The Do’s and Don’ts posters scattered around my surgery start with, DON’T COME TO THE SURGERY UNLESS YOU HAVE AN APPOINTMENT ‘. As it’s impossible to get an appointment no one ever sees these posters and the waiting room is always deserted.
One can only laugh as its only the ghosts that benefit in your surgery....though they may argue differently as no one can 'see' them in the waiting room!! 🤣😂
Snap, greyer grey hair. Tostran pump this time but dreading 6 months the fight. 😂😢
How does it show as a repeat on your medication list? My surgery puts it on a monthly repeat same as for men so they wouldn't mind if I had a box a month but one box every 29 weeks no no no! 😳
Just once a month!
Perhaps we should just stock up 😏
After 40+ yrs in Levo I have a stock!!😁
Sorry Lotty, crossed wires I was wondering about Tostran repeat prescriptions with Hay2016
Hi. It’s not on repeat at all. I write a letter with testosterone I need prescribing and then the fun starts. They can’t seem to get their heads round the fact a box lasts 8 months.
After my 4th visit to the surgery yesterday I see I've finally got a box prescribed but I notice not re-added to repeats so like you it'll be another woo-ha to come as I doubt there will be an automatic call up to re-test either 🙄.... luckily now I know the game play I'm persistent 😁🤗
My doctor was the same until I wrote a letter to the CCG and complained. Strangely I received a phone call the very next day and the GP apologised.
Worth a try. Should have email address attached to your surgery for patient experience?
Thankyou. Going to see if they respond positively to the blood test sent to them via Endo's PA!! I think the receptionist's attitude didn't help! So high-mighty! I was PA to Consultant Psychiatrist in my day so I do know how the system works!!
I had this recently. I had been on levo for 20 years. My doctor never even bothered to test my blood results unless I asked her. I did not know much back then so I used to ask her about every 3 years as I felt so ill. Doctor left me on 50 mcg's for all those years saying a TSH of 4 was fine and you have ME/CFS. I started to learn more 5 years back and insisted on an increase of T4 to 75 mcg and then 100 mcg. Still did not feel right, very fatigued, very weak, so stamina and hair falling out horribly. Adrenals flatlined and just scraping through by the evening.
I then insisted on seeing a NHS endo, took 7 months for referral. Last year I got to see NHS endo and he was worried about my T4 being over range and said it causes all sorts of problems including osteoporosis. I had already being diagnosed with that. I am 5' 5" slim, long boned. Endo measured TSH, T4 and T3. Said my T3 was only just scraping in with T4 too high. he said I am a poor converter and gave me T3. My doctor supplies the prescription for this.
First time ever 2 months ago surgery rang and said I need to have a thyroid blood test. I said the endo does them every 3 months. You need to ask for the results from him. No she insisted we have to do them. Since when? I said, you have never bothered to do them in the past. In fact I use to have to beg for a blood test. I pass out with my blood tests and do not feel good. I said, I am not doubling up on blood tests you either tell the endo that you will do them from now on and I will wait for the reply. Next day she rung me and said it is ok for endo to do them and I don't need them from the surgery.
Weirdest experience as I never had them hounding me on T4.
Sadly it's the annual blood test they have to do. Obligatory. I would be tempted to just get levo privately and opt out of nhs if they don't support you on T3 or endo. It's something I've been considering. Not expensive and less stress. Sad state of affairs when the nhs control our lives for the worse not the better.
They have kept me unwell for many years so now I am well each time I have to put them right and make them acknowledge my results are acceptable and keep on supplying I feel a little triumphant!
It's just a game I'm happy to play to show them the error of their ways and push for change 😁
All my consultants for various things have kept my surgery informed of what’s going off and it’s all down on my notes, I also refer back to these if anything should be questioned … I still have my annual review for prescribing regardless even if that falls awkwardly although the endocrinologist would usually ask for all my thyroid hormones to be tested and save the job doing them twice if timings were close… he usually sends this request along with my consultation notes, my GP surgery have been quite good with all this.
My surgery have caused me more harm with their thyroid ignorance so I want to keep well away! They don't understand blood results anyway+as no T3 bloods will be included, it's a waste of my time+my stress levels!
Never had this before. Last year told reception I'm under care of Endo+ it was written on my notes!!
I’m very lucky my GPs I’ve seen said to me it’s beyond their remit so to speak, and happy to refer me as required.
I explain as kindly and thoughtfully to the best I can, after all we’ve gone down many avenues in my decade or so ongoing health complexities, to find solutions to my problems, obviously trying not to undermine their qualification as a Dr. I present other scenarios and have valid studies and stats if required, to maybe ask look at this from outside the box not the more common symptoms and test ranges they will adhere to. I don’t go in demanding anything, more I do try work with them and it’s been reciprocal for me.
I read the guidelines to what my conditions are I know what’s likely to be available and not, so I have a clear understanding what to expect from those few minutes from GP …I am quite good to a point at researching biological areas (where required) …my main GP owns up to her lack of knowledge in areas (if not taught or experienced these areas personally we can’t expect it) they’re generalist not consultants and mine are quite happy to work with my consultants.
I have copies from consultants letters to GP and if anything alters I take that in… to question it.
Sorry you have awkward Drs to deal with and frustrating for you with ongoing issues too.
Some Drs do have fragile egos, they’re the brains in the room attitude, there’s a way to communicate with these types and having a daughter who is herself a Dr academically with a Doctorate in Psychology and a lead clinician at a hospital amongst other strings to her bow … she knows her way around people with these issues, she encounters them at times and can be the more qualified in the room🙄 and has helped me talk through how to deal with them.
I sadly know this feeling well Lottyplum..... and have encountered the same. Annually GPs have to do an annual check.....especially if ure over a certain age. I too am under an emminent nhs Professor of Endocrinology and his report is ignored. GPs can't always access blood test results done by a hospital am afraid. If its an annual check you will have little option but to comply or they will stop your prescription of thyroid meds.....I assume they issue the prescriptions for levo and lio?
My GP did take note that my Endo said to ignore TSH as it will be suppressed just to ensure ft4 & ft3 are in range. This recently changed and I was told I must get my TSH back in range by a GP.
I'd speak to your Endos secretary and see if he will email across your blood test results plus advice re TSH. Even with this they may still insist. Mine did.
I believe GPs get paid extra for annual blood tests check up. Their optimising pharmacist will then look at your meds to see if you should be on them and if there's anything cheaper or if they believe you are over prescribed. This process has caused me lots of problems....had my b12 injections stopped twice (because I'm outside the prescribing limits), both time reinstated thanks to my neurologist. My thyroid meds being bdt hit the bin last year. Despite the Professor of Enfo I was sent to by my local endo dept agreeing I need ndt to continue as been on it sucessfully for 17yrs....stil no sign yet of the nhs reinstating it. I'm caught in some political nonsense.. lol
My T3 is paid for by me via Endo prescription!! I'm so tired of their ignorant superiority!
Yep! Totally agree. I was told at my face to face consult (yes a real live one) not to speak unless I was asked a question.....this on my arrival in the room, first consult. Clearly not read my notes. So was informed your TSH is suppressed - we will not prescribe until it's back in range. Hmmm good luck with that one mate....its broke.....hasn't altered in years!!
Am not sure why one sees consultants if gps take no notice of them. It's what's on their pathways that counts and wow betide you if your body doesn't fit their script!!
I wonder if they'd be shocked if they knew how much they sound and behave like one of those automated robots used in large companies......who also can't understand more than one syllable and send you to on fruitless circles to endless different departments.....or cut you off. 😂
Same here! Being on T3 ensures my support TSH stays suppressed! And my surgery doesn't have a clue!!
No thry won't have a clue. Thry are taught to keep the TSH in range. They are taught that a suppressed TSH means you are over treated. End of!
Correct!!
Just read your BIO and it sounds like a mirror story of my journey.I think it's so worrying that the NHS and doctors and specialists do not have the patients interest first. No wonder its in such a mess. So much money and time is being wasted because of outdated thinking, and lack of knowledge.
I too have become an "expert" on my condition, out of desperation I had too! Would be in a wheelchair by now if I hadn't!!!!
It seems to be the only way doesn't it Penelope2 if you want to do the best you can for your health? Sad really and theres a huge wastage in the nhs because if this I agree. I will say that I have met some gems of consultants who are truly amazing and am grateful for their brilliance and support. Diamonds in the rough.
I get this with my HRT review but I’m not getting NHS levo so I’ve asked GP to no longer test TSH/T4 in the HRT review because i have regular medication reviews with my private thyroid Dr. (I.e. none of your beeswax!)
Just an idea to throw in but could you move fully to private healthcare, get levo prescribed by the endo and pay for it? Only suggesting because I saw on my medication list that levo is v cheap.
Then you’ve also got the full separation and can tell GP to butt out!
I have similar with thyroid (private) and iron (nhs haemotology) needing to work together but I’ve struck gold with a fantastic haemotology consultant who listens and recently when my low iron impacted my thyroid hormones, she brought forward an iron infusion. Bloody love her!
it’s very much system/nhs protocol driven : GP surgeries are under contract to the NHS.
I see an NHS Endo who writes to my GP after every consultation, but if I have an Endo blood test prior to a repeat prescription without seeing him, I have to ask his secretary to send the results to GP. It’s a huge gap in digitising the NHS that Hospitals and GP practices are not on a shared platform. When I saw a private Endo for years, it worked the same.
Your surgery is “covering its back” contractually. Most are happy by just referring to a Consultant’s letter to override the contractual risk. Writing to your local CCG for guidance would probably be helpful.
Last year surgery accepted my being under Endo+no prob with needing another blood test. This year, all change! Letters from Endo to surgery sent by email but they hadn’t received them!!! Mind boggling!
I know - they can drive you bonkers. Even with my arrangements working, every time I go to GP for anything, they want to do a TSH test because it’s red flagged on the system and I have to refer them to my notes. I have to have a preop blood test soon …..waiting for that to throw up an issue🙂
Learning how they all operate and how to advocate for yourself is immensely fraught with unseeable rules. I recently had to “give a reason for requesting MRI and SPECT CT scan reports” on my foot prior to consenting to a second round of surgery. Other consultants in the same Trust send results as a matter of course.
Mental health services are a trillion times worse: I have had 20 years of them with my daughter who has ‘SMI’ serious mental illness. I NEVER believe a single thing I am told: chase and verify everything. They are institutionally dangerously dysfunctional and dishonest to boot. (No offence to anyone in that sector) . GPs are annoying but I at lease ‘get’ their obligations .
Very best of luck
Many years ago I worked for a great, hard working consultant psychiatrist - but chasing his registrars was a nightmare! I made sure I checked every discharge file to ensure everything was in order - correct discharge meds, GP informed, domiciliary psychiatric nurse was informed+appt arranged, etc etc because so often things were incorrect! Then every Friday I had GPs wanting acute admissions (cos they didn't want disturbing at a w/e)+would not wish to speak to me but I was in charge of my Consultant's admissions so they had to speak to this non-medical women who was in charge!! So it appears nothing has changed! Care in the Community never worked - always cash strapped, never enough of anything! I trust your daughter gets the help she needs.
Ho Ho ho………
She had a letter 3 weeks ago. - “Sorry I didn’t see you on 27th. If you want another appointment ring the number above before 5 February. If we don’t hear from you I will discharge you .” Letter was copied to her GP .
- She had no appointment : in fact we were with her GP that day
- there was no signatory, no name of sender.
She rang the number to be told it was from her CPN - they would him ask him to ring. He rang 4 days later and admitted there never had been appointment …….
None of their letters ever make sense, let alone having to talk to anyone.
Dangerously dysfunctional from beginning to end. Already have the Lampard enquiry underway, and there will now be a Statutory Enquiry on Nottingham’s failures.
We stay away from them as much as possible
So, as I said, no change then decades later!!
Worse, I would say
You are right! Certainly not sufficient MH beds or sufficient knowledge@the GP level. I'm presently reading a book by an American Dr - Dr Eric Braverman, Younger Brain, Sharper Mind. I also have another book of his, The Edge Effect. Both discuss the 4 brain chemicals: Serotonin, Dopamine, Acetylcholine+GABA+lack of any of these (or all) can have a huge impact on brain function! B bits are also majorly important! 50 yrs ago whilst working in MH+researching a paper for junior drs training, I came across a woman psychiatrist who gave her patients monthly B6 injections to address severe PMS (one lady taking a knife to her husband) and was very successful! In Post natal depression, why are women given anti depressants and not hormone treatment? Your hormones have crashed instead of a gradual slide after birth so would hormones be a better option?? Just asking?? Are there more natural treatments that don't have horrendous side effects (like suicidal thoughts)? I do trust your daughter receives the best help.
Thank you your kind words🙂. My daughter’s ‘illness’ is as a result of severe childhood trauma/PTSD. I actually don’t perceive her as ‘ill’ - but responding in an entirely ‘normal’ way to horrific events : no different to war veterans. Returning service men and women are labelled with PTSD,; adult women are labelled with Personality Disorder.. … what any diagnosis fails to recognise is the extreme vulnerability of people with either label and the fact that they will all need protection from exploitation for the whole of their lives.
I have found no difference between NHS and private practitioners. They all make it up as they go along, and are capable of inflicting damage as a result of failing to understand what they don’t know.
The Dunning Kruger effect is rife in MH services.
My daughter is intelligent, educated and 3 steps ahead of every “specialist” she engages with but extremely vulnerable-which is the key fact they cannot grasp.
At her request, we have LPAs and she will not see anyone alone - I go to every appt. This has cut out some of the more lunatic suggestions😂 and protects her from the ‘professionals’.
Thank you again
The usual wasting of NHS money insisting on duplicate tests, which we have paid for already. I expect many of us have experienced this same argument with surgeries over low or non existent TSH levels, yet we feel perfectly fine on the dosage we take. My heart sinks every time I know a blood test (as you say for T4 only) is due.
A couple of years ago I managed to get a GP appt and showed all the evidence I had (from this site) about how tsh really has no bearing on our wellness. I thought the problem solved, but then I was given another GP. Now the pharmacy assistant rings me following my results and I explain, yet again, (even spoke twice to the same person as he had forgotten our previous conversation!). I cannot believe how totally incompetent the NHS is, it's like banging your head against a brick wall, but the brick wall takes more notice!
Good luck and keep the argument going, using evidence from this site.
Like you say, duplicating blood tests+no T3 anyway, which they don't understand! When ppl are unwell because under medicated they don't have the strength, physically or mentally to fight their corner! Where would we be without Thyroid UK?! Probably falling apart at the seams!🤐🤐
Absolutely agree100%!
Similar problems with my GP who insisted that private test results cannot be accepted as the laboratory standards are not as high as the NHS. He maintained the equipment was poor and could only measure the reference range as it was not sensitive enough.
I duly explained that the Vitamin D result was from an NHS lab in Birmingham and similarly MMH (MonitorMyHealth) who did the other testing is also an NHS lab and he was furious. I also informed him that most private services are CQC approved.
We have since parted ways.
how frequent should your GP do blood tests
New GP - result!!
T3 trial without blood tests 
