I’d be interested in opinions on whether my rights have been breached, as I’m feeling pretty mad about being told out of the blue to book a GP appointment about a Levothyroxine dose reduction, when I didn’t even know my thyroid had been tested! Especially as I’d paid a considerable fee to get a private endocrinologist to raise my dose last year from 50mcg to 75 mcg (with a TSH of 4.13). This rise has improved a lot of my symptoms, though it hasn’t been straightforward as my other medication, Fludrocortisone, a steroid, seems to affect thyroid levels. I’ve been gradually reducing the Fludrocortisone as the private endo said I was over-medicated with it - breathing depressed and unable to sleep, so getting levels of both meds right has been a bit of a balancing act, but I’ve been careful about only changing and testing one med at a time.
So this thyroid test occurred because I was to be referred to a gastroenterologist about my IBS, and the GP said he wanted a full blood count test and fecal protection test first. I booked the blood test with the GP surgery that afternoon, as I didn’t need to fast for an FBC test. I didn’t actually see the blood test form, as the nurse printed it out as she took the blood (big mistake!). So I didn’t know he had also requested thyroid function testing (only FT4 and TSH), liver function tests, bone profile, eGFRcreat, urea and electrolytes, ferritin - without discussing it with me during the appointment. How can they do all those tests without telling me first? The result is, I have thyroid results taken in the late afternoon, not having fasted, after taking my Levothyroxine, when all other thyroid tests I’ve followed the protocols recommended on this forum - early am, fasting and before the Levothyroxine dose, and including FT3. Surely the NHS can’t use my blood for tests like this without my knowledge or permission?
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Slow Dragon, thank you for your reply. Yes, I have autoimmune hypothyroidism. Ferritin was high (always is), and they didn’t test vitamin D, B12 or folate or FT3. I’m supplementing vitamin D and B12 following private testing. Folate is usually good. This GP test was late afternoon, and TSH was 0.11 (0.35-5.00 mu/L). A Medichecks test in January 2022 after 6 weeks on the increased 75 mcg Levothyroxine was TSH 1.62 (0.27-4.2 mu/L), FT3 4.21 (3.1-6.8 pmol/L), FT4 17.2 (12-22 pmol/L). Coeliac tests have been negative and I’m gluten free.
I’ve been experimenting with splitting my Levo dose since January, so that may have altered TSH, and I suppose the reduction in steroid may have altered TSH levels, but I think I won’t know for sure till I do another private thyroid test, including FT3, and follow the protocols, so I’m taking your advice and ordering another test.
From what I have read, the fact that you offered your arm would be taken as implied consent.
Effectively, when taking blood for testing, it is up to you to find out what they are taking it for. Which would probably be much more awkward nowadays with computerised systems. There isn't a piece to paper to check. And where labs might see some reason to do more tests (just as they drop tests all too often).
However, this does rather go against the view that for things like HIV and genetic testing, you would be expected to have some sort of discussion first.
I'd be very happy if someone who understands law and medicine properly could tell us with considerably more certainty!
Your summary is correct in part. Implied consent is sufficient for most tests and offering the arm is taken as implied consent.
For HIV, genetic testing etc, there should be an informed discussion about the implications of testing before consent is given. Recently, however, informed discussion has been deemed as unnecessary and is replaced by posters around the waiting room. That was of course the thin edge of the wedge, and those posters have now replaced verbal consent. They contain the words ‘Be aware that you may be screened for a number of conditions, including HIV etc. Ask the Phlebotomist if you are unsure of the blood tests you are having’. Genetic testing though must have informed discussion and verbal - not implied- consent. It’s a minefield and most doctors will work within the spirit of the regulations not the word of them.
On the subject of consent, make sure that you are aware of every medication you are given via every orifice. I was recently in hospital and had a phial of Oramorph pushed into the side of my mouth while I was dozing. I quickly removed it. I cannot tolerate oral morphine.
I could cite many examples of such practices. Make sure you ask whatever is being put into a cannula and why. I was dosed up with a very large dose of a PPI without my knowledge or consent.
Agreed, I always ask exactly what is being put where and why. I refused all pain relief after my appendectomy as they were very keen to fill me with morphine, which I'm allergic to.
Similarly I always cross a line through the bit on the surgery consent form where it used to say if they find anything else suspect whilst they've opened you up they'll take the necessary steps to treat it.
No way are they playing Operation and taking out my bits willy nilly. I want full disclosure before they are allowed to do that.
Astonishing that it falls on the patient to have the where with all to ask, to be aware and to check even when you are ill in hospital and direct the staff!! This is the reason I take my OWN meds into hospital so to some degree can avoid the mess ups that occur when the medical fraternity are left to implement. They seem to be also unaware of how meds should be taken or contra indications ir which ones should never be taken together. You have to check it all & rely on Dr Google if your not sure. Am sure its all to avoid liability that they place it on the patients shoulders.When I had a big big op and was in no fit state to manage my meds I had to hand it over....complete balls up. They misread the dose and frequency of my heart meds. Even in my morphine induced state I notice something was badly wrong and spoke to the doctor. He hadn't a clue & panicked when he realised he'd messed up. Thank goodness I wasn't in a coma! I have ZERO trust or faith in the medics being able to manage prescribed medicines. Do so at your own risk!
I’m recently out of hospital. Although they were given my GP repeat script list, I wasn’t given 3 of my prescribed drugs (my NDT was secreted in my handbag. I never go anywhere without 10 in a pill box)Reason: “Doctor hasn’t written them up yet”
As is normal in large organisations there are often gaps between what should be done and what is done. Especially so within the medical profession. Ironically, I've just had a phone call from a colleague who has not been following our own guidance, so I've had to advise him on what the correct procedure is.
Giving patients information on what should be done is empowering and reinforced the legalities of consent so that they can "remind" doctors of their own obligations.
I have online access with my GP and always check my patient record prior to booking for blood tests. I can see which ones have been ordered so I know if I need an early morning test or if it doesn't matter.
I attend the blood taking unit at my hospital and they hand you the printed form to give to the phlebotomist. I always eyeball it to makes sure all the relevant tests are on it.
Good that you e still got forms. Most places, mine included are going over to ordercoms. They only print a barcode to stick on blood tube. The text just says go for blood test so unless you ask you could give the reference number and have no idea what’s being tested. 😢 then they make you feel awful when you phone and ask. 🤷♀️
Hi Hay216. Yes, it seems that although all this automation must save them time, it can make our lives more difficult. You need your wits about you, through all the brain fog!
Sparkling sunshine. After this experience, I think you’re absolutely right to be so careful. I’m going to triple check everything from now on. It’s enough to make anyone paranoid. It doesn’t pay to have a trusting nature.
Well I nearly got caught out yesterday, was meant to be having an iron panel for elevated ferritin, sat waiting my turn and was checking the forms. I noticed a second form stapled on the back and saw to my dismay it was a TFT. I'd checked my online patient record previously and it definitely wasn't on there.
I think it was a duplicate request from end of June, when thyroid was checked. However I'd taken my thyroid meds that morning and had a coffee so I had to cancel all my bloods. No way was I chancing it. I suppose I could have asked them not to do the thyroid one but there's no guarantee they would have listened. I've now got to contact my surgery and ask what the mix up was.
Helvella, thank you for your reply. I had no idea that this could happen. Surely as patients we should be informed that we don’t have to be informed!!! From my point of view, offering my arm for a blood draw didn’t mean I could be tested for every blood test under the sun!
He told you he wanted a full blood count. That always includes thyroid and all the other things you mention.
No use being up in arms about it. Just refuse to reduce your medication when you have that chat and insist things are retested in 3 months time instead. Be sure to say how much better you are feeling.
I think part of the problem here is the ambiguity about what an FBC consists of, and I will be asking the GP this question when I speak to him on Tuesday. If it can include thyroid function, I suggest we should all be aware of this, so as not to be horribly surprised as I was yesterday.
The fact that GPs request them all at the same time, and all the results are in one long list, doesn't mean they are one and the same thing.
FBC is a very, very common test request. If it included TFTs by default, then everyone who has an FBC would also be effectively being screened for thyroid disorder. That very definitely isn't the case!
The laboratory report might well print results of multiple requests one after another without obvious gaps or new headings. Making it impossible for us to know what boxes existed on the request form - and which ones had been ticked. (Unless we happen to know that, for example, TSH, FT4 and FT3 are only under the box TFT - Thyroid Function Test.)
The Wiki article explains some of the history and what is included.
With all the quangos, acronyms and protocols designed to confuse our understanding, perhaps we should all go back to the good old NHS Constitution. It’s updated every ten years ; it’s written in simple language and will give you all the information you need to understand your rights and entitlements. This is for England. I’m sure that there will be similar documents for Scotland and Wales
I feel it a pity that they didn't all use the same sort of name for their documents. And point from their own sites/documents to the equivalent in the other nations.
Unusually I have to disagree with you on this one.
Offering your arm doses not imply consent. Montgomery v Lanarkshire 2015 made it very clear that consent has to be sought from the patient and the doctor has to spell out exactly what treatment, including tests, they are recommending.
The General Medical Council amended their guidance on consent following this case to make it clear to doctors that patients are the decision makers for their care. Doctors have to tell their patients what they recommend as treatment including tests. (my summary)
the document is lengthy but written in clear language.
it says to the doctor:
You must give patients the information they want or need to make a decision.
This will usually include:
a) diagnosis and prognosis
b) uncertainties about the diagnosis or prognosis, including options for further investigation*
c) options for treating or managing the condition, including the option to take no action
d) the nature of each option, what would be involved, and the desired outcome
e) the potential benefits, risks of harm, uncertainties about and likelihood of success for each option, including the option to take no action.
By ‘harm’ we mean any potential negative outcome, including a side effect or complication.*
it goes on to say:
Finding out what matters to a patient
16
You must listen to patients and encourage them to ask questions.
17
You should try to find out what matters to patients about their health – their wishes and fears, what activities are important to their quality of life, both personally and professionally – so you can support them to assess the likely impact of the potential outcomes for each option.
18
You must seek to explore your patient’s needs, values and priorities that influence their decision making, their concerns and preferences about the options and their expectations about what treatment or care could achieve.
19
You should ask questions to encourage patients to express what matters to them, so you can identify what information about the options might influence their choice.
20
You should explore with patients what risks they would and wouldn’t be prepared to take to achieve a desired outcome, and how the likelihood of a particular outcome might influence their choice
in this case I think that the doctor should have told bluejourney that he wanted all those tests carried out. From blujourney's limited account he didn't make any efforts to discuss the full range of tests and why he wanted them, and what bluejourney's preferences were. he disregarded the guidance that recognises that the patient makes the decision about their health care.
This is important in the case as bluejourney was advised to reduce her dose.
Can the results be used?
In my view yes, even if they were obtained without consent.
But.... I would argue that the TSH &T4 were not reliable as they were taken at an inappropriate time.
Thank you very much DippyDame for the links. The NHS link definitely says you must give your consent for treatment, including simple blood tests, but as Helvella points out, is holding out your arm for a blood test you know about, in fact giving consent for other blood tests you haven’t been informed about?
blue journey If the thyroid blood tests are not to your favour and you need to have them ignored, tell the GP that you were taking a B complex vitamin which contained biotin and then explain to him that biotin skews the results. Needs must when they test when you are not expecting it!
This is an odd one. I think a high percentage of patients would not bat an eyelid, just trust in the system. Us ‘educated’ hypothyroid patients are quite a different breed. I was recently searching through my medical records to see if I had ever had my thyroid tested and had never been told the results. One of the reasons for this was, one day I was sitting waiting for a blood test and someone’s records were still on the computer screen. I could not help but look. 3rd STAGE KIDNEY DISEASE was written along the top of the page. I thought, poor soul and I better stop looking. However a thought occurred to me. Could this be my records? So a closer look and yes it was my records. I was never told of this situation. It was a big shock. There were lots of apologies etc but it definitely got me thinking differently about the practice. Anyway back to the newly revealed records. Someone had asked for a hypothyroid test in 2014. This was SEVEN years before I finally was diagnosed. Naturally I am none too pleased. I can’t help but think if I had been told the nature of the test I would have been waiting with baited breath for the outcome. As it was, my husband who was working abroad and had limited time in the country needed a blood test, so I checked with the surgery, could he have my slot? Yes. I never got around to making another appointment for myself, no way in their system to remind me, brain fog etc etc. So I agree with you. It’s VITAL that we are informed of anything they undertake on our behalf. It’s just common sense - never mind the blooming law.
Is that kidney message still on your record (via patient access) or did they sanitize that (and therefore who knows what else) before making them available to you? I ask as my surgery is providing patient access in October (2 months from now) and suspicious me wonders if they are sanitizing them beforehand!
I put this response on another discussion of online access earlier this week 🙄.
As I have stated in my profile and in a fair few posts, my patient access has been more doctored than I am. This is why I keep chipping in to advise to NOT rely on patient access when forum members are routinely advising this as the route to one’s records. As soon as they know they have ‘stuffed up’ things disappear. It is an abuse of the system but if trying to cover tracks probably an obvious choice for GPs.
You are right to be suspicious. All kinds of things from my records have gone missing or been altered since my surgery provided patient access eg FT3 result suddenly vanishing.Fortunately I had already printed it off, so I did have proof of it's existence!
I complained about one particularly glaring piece of erroneous information ( it said that I DID NOT ATTEND in capital letters, a breast screening appointment.......completely untrue!). The entry was removed, but as a result of my complaint, I was "punished" by my enhanced access being removed.
Now all I can get are blood test results and the rest is just a lot of coded entries. Getting it reinstated is a future battle I must get sorted.
I noticed that on mine too, because I didn't book one straightaway doesn't mean I did not attend it, it's not as if I was given an appointment and missed it! I think it's just for their statistics. I think I will take a copy of everything now...
Hi grumpyold, just fyi - those codes are specific to conditions, operations or tests and you can google them to find out what they mean. But it's disgraceful that you should have to and the fact that surgeries can just remove info from patient records should be (or probably is) illegal. They are a legal document (I think belonging to you because they are all about you!) and any fiddling with them to change what they say about you is wrong because then you could receive the wrong treatment - which could be harmful. I don't know this for certain, but in 30 years as a Paramedic information governance was one of the things most talked about, and after 2 appearances at Coroners Court I would never dare to alter any records without leaving the original entry legible and stating why it has been changed. Because thems the rules! (Witness at CC, not accused!) I realise with computers things can just be deleted but the metadata would show it had been there. Although that would be a whole nother can of worms... 😑 I have an entry in my notes which couldn't possibly relate to me as I was registered with the RAF MO at that point rather than any civvy GP and all RAF notes stay with the RAF so it just wasn't me. I've only just found out about it when GP did a ref to private endo for me and I would like to get it removed but obviously then I worry about making waves when I've just got meds after 12 years of dismissal and patronising by the NHS and I can't afford to pay for them privately so I need to keep in the good books! It's not good when one person holds all that power!
It’s still there but no wonder we are being paranoid. I think more and more that we are being treated as some sort of alien species; not worthy of being treated like human beings. Frankly I am beginning to wonder if they could be an alien species! The NHS is all about ‘protocols’ from admin to consultants. There is less and less dependence on knowledge and common sense everywhere within it. However it has to be said it’s like that now in the wider world. It’s just extra shocking when it’s this particular world (NHS).
One of the terrible things about protocols is that they become emprisoning straightjackets.
I suspect even the originators of many protocols understand that they do not cover every eventuality. But those following them all too often do so blindly, without understanding the protocol, nor its range of applicability.
Just recently there has been focus on the extrication of people from car crashes. Where it is suggested the protocol which has been in place for years is wrong-headed. Speed trumps super-immobilisation in most cases, it appears.
The trouble with protocols is that for those following them they dont have to think! It leads to an inability to analyse and assess, to tunnel vision because its not in the protocol!! This is happening in education. Teachers are expected to teach page 55 on term 1 week 5 no matter where the pupils are at.....bonkers. A dear teaching friend of mine said this has led to a lack of ability to improvise or adapt.....so when she was interviewing new teachers she would put them in a class and suggest they improvise for 5-10mins. She was shocked to see they couldnt......they need the manual. They were asking for the lesson plan etc... Whereas whn my friend wnd ai trained there wasnt a national curriculum.....we were expected to assess our pupils and create a suitable curriculum for all.
Medicine is like this.......if its not on the screen or you dont fit a pathway then nothing happens!! The other day I met an older consultant gynaecologist for a consultation (Ive been milling around in the system with no joy for a few years)....refreshingly he was albe to look at me objectively, assess and analyse.......and of course we moved on much faster.....and had a way forward plotted out in no time. They am afraid are a dying breed....though you might stand a chance with a consultant who also undertakes research. As for GPs......Nooo! They do signposting following pathways and do medicine according to set protocols and if you dont fit bad luck......but they can write prescriptions.....
It was always easy to tell who needed immobilisation and who didn't. The ones who really needed it knew and were very compliant because, as they said to us, it feels like if I move my head will fall off! If we needed to get them out quickly we used 'self-splinting' along with other kit, especially round our end of the country where extra resources were few and far between. 'They' decided (eventually) collars could give the patient a false sense of security and being uncomfortable could prompt more movement than telling them to keep their head still. Makes sense really, especially when they didn't really fit well in the first place. Progress...
Thank you. However there are a lot of horrifying stories on here. I salute each and every one. It’s basically inhumane, what happens to many patients within the NHS. Mostly I am sure it’s unintentional but it can be very damaging all the same. I know I have let them get away with quite a lot. My observation is that the NHS mostly succeeds with much that it does but it’s not very good at dealing with the things it can’t or won’t deal with, for example unhappy thyroid patients. I appreciate not all patients want to know the ins and outs but the NHS does not even supply basic information to many patients about how to care for themselves leaving hospital after major surgery; far less us pour souls with a list of symptoms that can fill four foolscap pages. The NHS online information about hypothyroidism is very basic. Does anyone actually learn from the info supplied? No! We find out here. Thankfully.
I have heard people split their dose of T3 as the half life is so short it evens out the effect for some, can I ask why you split the Levothyroxine? It has a much longer half life. SlowDragon ? helvella ? If someone is splitting their dose of Levothyroxine the take last dose 24 hours before test falls by the wayside. Would be good to know if this could cause problems with blood tests potentially. or do you modify dosing prior to test . Does having to do this cause a discernible effect. Interesting 🤔
On the basis that a working thyroid splits the dose into innumerable microdoses through 24 hours, I'm happy to accept that dose splitting does work.
If we had an implantable device which could releaseT4 and/or T3 hundreds of times a day, I think we'd likely find the best regimen by spreading doses as finely as possible - though we might adjust the sizes of the doses a little.
Splitting a dose in two will impact differently on testing. An over-simplified view might suggest that at its highest level it will be lower than with single dosing; and and its lowest level it will be higher. Therefore time should matter a bit less! I'd go for somewhere towards 12 hours between last dose and test.
I doubt we have much hard evidence of blood levels after dose splitting.
I wonder where Dr Simon Pierce’s public announcement in the Thyroid Trust interview, that “ If you don’t feel better on the medication - you have not got hypothyroidism”. He is off course only referring to T4 as he does not think T3 has a place in treatment of hypothyroidism. What I mean is that T3 does seem to have heightening and lowering of sensation and responses more like ‘normal people’. Oh shoot I think I have answered my own question. I am not a robot.
This is very interesting, the subcutaneous method sounds a very positive step. I see where the lower high and higher low comes in, but Oh I miss my overdrive, that natural boost that used to kick in on demand as the body’s capacity for work ramped up. Now I’m pace yourself or pay the price.
A well regarded doctor specialising in hypothyroidism takes a bit extra of his ndt on busy days....love it! Cos yes its so true our set doses do not allow different levels of activity. I also took a little less during the heatwave.
Hi Charley-Farley,Thanks for your words of support. Yes, I’m getting much better at standing up for myself with doctors. I haven’t seen this particular GP before, and I have another phone appointment with him on Tuesday, so am prepared to argue my case. I have sent off for a Monitor My Health thyroid test, so will be interested to see what that shows. You never know, the GP’s test may be right!
Changing my Fludrocortisone dose definitely has an effect on my Levothyroxine dose, but the doctors haven’t been any help, quite frankly, in helping me get the balance right. Interestingly, although it’s a mineralcorticoid, I’ve found the Fludrocortisone is reflected as free cortisol (which is a glucocorticoid) on the Genova Diagnostics saliva adrenal stress profile test, and I have done 3 profiles so far, one for each time I’ve lowered my Fludrocortisone dose. The profile now shows a more normal cortisol level, and I’m sleeping better. I recently showed these to my NHS endo, who’d prescribed the Fludrocortisone, and he refused to believe that a mineralcorticoid could be converted to cortisol in this way. Sometimes you really feel you’re on your own in this. Some doctors are not only ignorant, they’re not willing to be open-minded and scientific.
I started splitting my Levothyroxine dose to try to increase my FT4 to FT3 conversion, and it seems to be working. I read a very interesting post of hashihouseman’s (19th April) on this subject. I take 50 mcg on waking, and 12.5 at 6pm, and 12.5 at 11 pm. If I wake in the night and can’t get back to sleep, I take 12.5 of my morning dose, and that restores my sleep. The day before a thyroid test I take all the dose in the morning, then resume the dose splitting after the test.
This is very interesting! My god you have a battle ahead. But at the end of the day blood results were not taken in optimal conditions - the last one was at a different time of the day and shortly after taking medication whilst still trying to stabilise other medication. Not comparable.
There is a pituitary thyroid relationship actually (H-P-T axis) they will affect one another and at the very least a few more weeks need to pass to ensure everything has settled down. When conducting an experiment it is BAD science to change more than one variable at a time and to NOT wait for that change to fully take effect. Ultimately this should, in fact must apply to medicine also.
There is also the question of Symptoms. If you are feeling ok on your medication do not let them reduce your medication based on the least reliable measurement which was initially only supposed to be a diagnostic. Somewhere down the line a twit decided to use it as a management measure, probably based on cost saving.
My analogy for TSH is if I wanted to know how you were I could go to your next door neighbour. I knock on the door and I say “Hi can you tell me how bluejourney is feeling?” And depending on how you and your neighbour get on I could get anywhere between a detailed explanation of what you had done the last week because you are best friends and tell each other everything or no idea we haven’t spoken for a few years.
The calibration between the pituitary and the thyroid is not a constant either within a person or within a population.
The one thing you can say is that if you actually test the thyroid hormones you are getting a direct measurement.
The TSH measurement by virtue of the fact it is testing a hormone that comes from the pituitary is an indirect measurement. Why the medical profession cannot see this is beyond me other than they don’t question anything they just do. I do find they lack open thinking and when I have had conversations with the GPs at the local surgery you can hear long pauses on the phone as pennies drop. Only one has actually pushed back on me to the point of where we had to have an argument which obviously I won. I have more time to read than they do.
That said - Below is a link to a paper related to TSH which debunks a lot of the guff. Basically as long as your TSH is a measurable Importantly, even if it’s below range and it’s detectable it is not suppressed. Emphasis should be made on high TSH is more deleterious. TSH is a currency they work in so it does help to talk about it a bit. Historically they seem to have preferred to have people a little UNDERmedicated.
Once on medication people should be aiming for a TSH of no more than one.
Why dies the TSH have to be neasurable? My thyroid is totally dead. The TSH level is of no importance to me but the thyroid hormone levels alongside signs & symptoms.....the latter two rarely considered these days! My TSH is always depressed because I'm on a ndt....it will never change. Been like that for over 12yrs & caused me no harm. I agree the harm cones from being under treated....something that for sone strange unfathomable reason never crosses their minds.....probably because its not on their wretched pathway! 🤣😂
I would expect a FBC to cover everything - heart enzymes, liver, etc etc. Tell your GP that the results for your Thyroid will be wrong as they were in the afternoon and after you had taken a dose. Show him the results that you had done privately.
Hi Digger0,That’s interesting you say that. I would expect an FBC to be what it says on the tin, or notated as FBC ‘with liver function’ etc. the GP only mentioned he was doing an FBC and fecal protectin . That one was a stool sample, so I felt in control of that one!
It is a full count of the various aspects of blood you can physically count and sizes of some components. As in red blood cells, white blood cells, sizes of the cells, etc.
Even within that, the precise constituents of an FBC do vary. Not all include Red cell Distribution Width (RDW). And it is called Complete Blood Count (CBC) in some countries. Again with variations.
FBC is not the same as ticking all the available boxes on a blood test request!
As you’ve been asked to make an appointment to discuss thyroid management you could take it as an opportunity to educate your GP and be honest about how much aggro it’s taken for you to get to where you are now. And if they refuse to understand that just refuse to reduce your dose without sufficient evidence that you are over medicated
My GP records always state "informed consent given" , although looking back at my records many more tests had taken place than I had expected. This is the same for my partner, too, and has actually proved helpful for both of us on occasion, even if the results came up with an unexpected shock. Regarding your unexpected afternoon test, simply ask for it to be repeated under the conditions that you prefer. Pre-diagnosis, and in my early post-diagnosis days, tests were done under varying conditions, including after eating and after taking meds, but for me there was no significant difference. In any case it does appear that the difference recent food intake affects thyroid test results has been discounted. Hope you can get the results that you want soon.
Thank you, I think you’re right. This is a GP new to me, who probably just sees me as a snapshot test result. We’ve all been on a journey to get where we are, so I will attempt to explain what’s it involves for me. Trouble is, you find yourself trying to condense it all into the short time allotted to you, and can hear yourself gabbling faster and faster. As to ‘educating them’, I’ve found it needs to be done bearing in mind you could completely put their back up, depending on their attitude. This GP sounded perfectly pleasant on the phone, so maybe I’ll be in luck.
Hope you are lucky with this one. One never knows the long term effect of what we say. Ive had a few humdinger with the senior GP.....to the extent I generally avoid. However the pandemic removed that choice.....so found myself in a phone consultation with him. Yikes thought I. Especially as they'd done a thyroid test without my knowledge so had taken my thyroid tablets....so surprise am over range. When I explained he back down instantly and said if you feel well then it's fine....he left me the option to retest whenever I wanted. He clearly had thought about what I had said in previous consultations. Either that or on my notes there's a big warning flag....beware informed patient!! 🤣😂
Thinking about this some more, there could well also be an issue if you are expressly told that blood is being taken for TSH, FT4 and FT3 and in reality they only analyse TSH.
If the lab operates any form of reflex, reflect, or cascade which means tests you are expecting are not done, they have broken the implicit agreement. The draw was on the grounds of three tests being done.
(A bit less certain of you were just told "thyroid panel" or similar.)
Cant comment on the legal aspects but I do know this....mine are all ordered electronically. The phlebotomists at the hospital don't know what they are testing as they just print off barcodes. They just fill requested no of vials. So there is no way of checking. Last time I asked the GP are you testing my thyroid levels as Ive taken my meds. She said no. And yes they tested TSH & Ft4. Pointless waste of money. This time they sent me a text to get bloods tested. Nothing specific stated. So I rang surgery & asked what are you testing. No one knew! It had popped up on their computer... So if doctors/nurses don't know what they are testing how can it be that I'm consenting by offering my arm for bloods? Some legal beagle needs to challenge this!
There simply must be some way of finding out. (Not saying there currently is a way - just that in my view both legally and morally/ethically a way must be found.)
Absolutely agree! How can it be considered am giving consent when even the medical staff dont know what is being tested. I find it increasingly worrying how little GPs know.......and frankly they dont seem to be concerned at all!!
I was informed after I got to his office for my 2pm appointment prior to the appointment I had no idea he never even mentioned blood test since I had one not to long before that appointment so I took my meds as usual.
I declined the decrease and said retest… these doctors are sneaky.
It isn't a breach of your rights , but it would be considered as a minor breach of protocol . Because they didn't tell you all the tests that were requested by what seems to be a very thorough gastroenterologist ( which should hopefully bode well for a more positive) they have not taken your thyroid tests at the right time.
When you go to your appointment to " discuss" your medication dose you will basically be able to turn the tables politely on your GP.
When they want to tell you to reduce you can politely and firmly tell them that , that is something that you will come back to discuss only after a second full thyroid panel because as they didn't inform you of all the tests being done you were not able to point out to them the mistake about when the blood sample should have been taken , and that your new test must happen in the morning.
It's more than likely that the GP read the first couple of tests on the Consultants request and neglected to read the rest . The Nurse has also showed a lack of diligence by just reading the tests and not noticing you were having a thyroid test at the same time or didn't even realise when that should be taken.
It might be worthwhile politely suggesting to the GP that it would be useful to the nurses to be reminded of which times of day different tests should be taken so that these errors don't happen so often in the future.
If you disagree with your GP after a new test and they still want a reduction you are allowed to contact the private endocrinologist to tell them what is going on and ask for their advice. That Consultant could end up contacting your GP and saving you the stress of dealing with the doctor .
Where I am it is all electronic.....they dont seem to be able to view what is ordered, just take the bloods. Its completely bonkers because as you correctly point out some tests are fasting, some to take early etc......how can they ensure this happens if the nurse/phlebotomist cant see whats being tested!!
Even with an electronic system both the GP and Nurses can read all the tests requested on the list on the screen . Stating they can't read it would be a total excuse for not following the protocol of telling you all the tests you were going to have done on your samples.
The nurse had to print off the correct labels for your tests to ensure she took the right amount of blood and used the right type of test bottle for that test.
The protocol for nurses is meant to be that they read off all the tests to you that you were meant to be having at that appointment to make sure you are properly informed and happy to have them , and to make sure that a test you were meant to be having hadn't accidentally been left of the computer list.
This is often the way we find out about additional tests that the GP chose to add to the list after a consultation with them has finished when they reviewed the discussion in surgery and were finishing adding their notes to our records.
Sometimes tests we didn't know were added until later are a positive thing and prove the GP is thoroughly taking note of our wider needs in their testing.
The GP should have noticed that a thyroid test was on the list, however, and had the knowledge to inform you that you needed to make a morning appointment .
The Nurse should have had the correct knowledge to note she was taking a thyroid sample and realised that you would need to come back for a morning appointment to complete that test for accurate results.
At the least they have not followed working protocol or have both lacked in concern or conscientiousness to do the tests correctly. At worst , they have completely forgotten , or have not got the knowledge , to recognise that thyroid tests must be done at the right time.
Of course , they all seem to get rather nonchalant about these test mistakes and just think it's fine to have to repeat them , wasting your time when you have to go in again and wasting NHS money because of their test errors.
I would say I get called back 50% of the time to repeat even the most simple blood tests because of surgery mistakes. Even if I know what is being done and double check how much blood is taken and when it should be done , I've not quite learnt which bottle colours are required for each test yet..... But then again that isn't really my job , is it?!
Am confused by what you have said as no one at my GP surgery, receptionist, nurse, two doctors could tell me. Ive repeatedly asked. Whenever I go to phlebotomy at the hospital I have been consistently told by different ones they cant see what the tests are they just follow the protocol on their screen eg no of vials, how much blood in each one etc & print each label off. The labels on the test tubes each have only a barcode. I only have to give the phlebotomist my hospital number on arrival. They never ask me if Ive fasted or taken meds because they dont seem to know what the tests are!! I dont use the nurse at the GP surgery anymore because they cant give me an early morning time (dont open till 9am and no appointments before 9.30am) and secondly they struggle to get blood out as they dont have the fine needles phlebotomists at the hospital have.
But the GP surgery receptionist emailed the practise nurse to ask her what the blood tests are, she didnt know, neither did the GPs. Dhe did try! This last lot were an age triggered screening so might explain it. I can always get a copy of the results though!!
I despair.....its such lazy care....I know theyre busy but it doesn't inspire confidence at all. In all honesty I have no faith in them at all. I have to chase everything & self diagnose, then push for treatment......drives me nuts.....they ask me as Ive been right everytime....but Im not a doctor, have no training, and I feel I shouldnt have to go through the stress/worry of figuring out whats wrong.....they should do their job! But if I dont they dont have the time /inclination to figure it out and of course getting a phone call isnt easy let alone a face to face. Why do I stay? I hear its no better elsewhere in my area and my surgery agreed to underwrite my NDT so get it on the nhs. Another surgery might refuse me even though a nhs endo recommended it.....my previous surgery refused to precribe.
Apologies for the rant!! Its such hard work getting care!! Sorry...
Completely understand , I feel like that myself quite often too. I have had to struggle tooth and nail for the diagnosis to be done properly of my various conditions and basically explain illnesses and tests to even Senior Consultants to get things done.You're right we shouldn't have to do all the research and checks on medications and tests for things we have or may have , it often feels like a full time job done by me but my doctor gets paid for it.
I am in Wales and they won't refer over the border to specialist centres that I need because of the separate funding of health under the regional government which caused even more delays for me.
I am seriously considering moving over the border to England to get access to care which should be available to all in the UK. I have finally started seeing a new GP in our practice whom seems open to discussing treatment and understands their are complex issues for me because of my multiple conditions.
I see what you mean about it being better the devil you know especially if they have signed off on medication . You could always do some more research into other surgeries close by and the experience of the doctors that work there and then try to move onto the books with a good thyroid GP.
If you got the medication at your current surgery it does mean that the president has been laid that that medication should be available now to any patient with your condition at any surgery in your area.
You could argue that point if they did try to refuse your medication if you choose to go to a new surgery. If it was recommended by an Endocrinologist you can argue the point that they have no right to refuse a medication recommended by a Consultant without having and explaining their good cause .
The Endocrinologist can also step in on your behalf if you contact their office and explain that your GP won't give you any treatment they recommended and they will usually complain about this on your behalf as Consultants never like to be second guessed by a GP.
Thanks Blearyeyed. So sorry to hear that you have had to do the same. I spent many a long consultation with cardiologists explaining my Diagnosed tremors are not the result of over treatment of my thyroid but something completely different!! 🙈 so totally get what you are saying......lol So shocking that you dont get the same treatment in wales as the rest of the uk. Absolute disgrace......poor you. So wrong......post code lottery......sigh.
The nhs endocrinologist i saw isnt in my area......I travelled a long long way to see him and he has since retired. Bizarrely his local CCG had banned nhs ndt prescriptions but he could recommend for other areas in the uk.......go figure! Very nice & he stood up to the ignorant cardiologist for me. The endocrinologists in my area are well known & notorious, headed up by a well know one who believes its mainly in our heads so I refused to be referred locally. Its quite possible though that if I attempt to move to another surgery locally I could be stirring a hornets nest, especially if a new surgery consults them. 🙈So I choose to lie low....cant win them all.....lol.
I really hope you get access to what you need healthwise. Its appalling you have to think about moving to do so. Its rubbish we have to fight do hard to get our health needs met. Xx
Thanks Blearyeyed for your reply. A consultant wasn’t involved in the testing. It was the GP wanted the tests before he would refer me to the gastroenterologist. As far as I can make out, the NHS GP’s don’t consider the time you have your thyroid test important, or whether it’s fasting, or whether you’ve taken your Levothyroxine, so wouldn’t see this as a mistake.
Thats true bluejourney......I have to insist! This is why I trail up to the hospital because they start blood tests there at 7am whereas my GP surgery you'd be lucky to get a test before 10am....
Unfortunately , that is part of the problem isn't it. We would all get better care if they actually realised they do need to take tests at the right times and in the right conditions to get the most accurate results.I just gave an answer to waveylines about protocol above if you want to take a look , it expands on this point.
I hope you get checked again anyway before the GP thinks they can change your dose.
Blearyeyed I can only say that you must have much better informed GPs nurse then my surgery......lol. I think whats happening is as they are getting more and more short staffed so more corners are cut.....to save time I think a lot of my tests are computer generated so they dont have to remember to make requests hence the ignorance. Eg thyroid tests, blood tests to check kidneys liver etc if on certain other meds.... its good cos you dont get overlooked but poor that only a computer knows what they are!! 🤣😂
This happened to me last week. Hospital blood tests included thyroid - after I'd taken two doses of T3 that day. Interesting to find out what my peak T3 level is after dosing. However it necessitated a trip to my GP to get him to add to my record that these results weren't taken under the same conditions as normal and weren't comparable and couldn't be used for dosing management.
Hi BB001. I’m interested to hear that this happened to you. It’s a worry that a potentially inaccurate thyroid panel is written in your medical notes, and triggering a dose reduction. I think NHS GP’s recognise that doses of T3 can affect test results, but I don’t think they mostly believe Levothyroxine affects the test. My private endo insists you have the thyroid tested early am , fasting and before Levo. It’s good you got the fact it was inaccurate recorded in your notes.
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