Some of you may remember that I had quite a disparity in FT4 results using my local NHS Lab & MMH a couple of months ago, using the same blood draw for both tests. I wrote to both labs on 5th May, but have not received a response from either. I think I was too polite.
I had various tests earlier this month and all results appeared timely on PatientAccess, apart from the FT4 result, and not only that, but all FT4 results going back to 2007 are now not available (I was able to get a print of the FT4 results from the Surgery). I saw my GP last week, and raised the question.....the answer was "That'll be the Lab". I thought it was a bit odd, but there'd been the same kind of issue with eGFR results when they changed the calculation from MDRD to CKD-EPI........but then my daughter (also Hashi's) got tested this week, and her FT4 results are available to view. .....so it seems like this is a result of my letter to the lab.
The letters to both labs were basically identical. This is what I wrote to my NHS lab:-
"I was diagnosed Hypothyroid in 2007 with TPO 633, and have since been on varying doses of Levothyroxine as indicated by blood test results and consultations with my GP . I've not really felt well since 2007, and in the past two years have had a couple of other health issues, which are not relevant here, but have prompted me to try to better understand/manage my thyroid condition. In this regard I have organised further testing with Monitor My Health (MMH) at NHS Exeter.
I have used MMH for thyroid testing three times over the past eight months along-side my local NHS testing at >>>>>> Hospital, and write to advise you that there is an alarming disparity between MMH and >>>>>>>> NHS lab in two out of the three FT4 results."
I detailed the results, and testing conditions...........for reference, the biggest discrepancy was this result:-
NHS FT4 17.2 (9.5 - 22.7) 58%
MMH FT4 21.3 (12 - 22) 93%
Then I asked...
"I understand that MMH testing is for information purposes only, but I am concerned that I am unable to have confidence in the reliability of any of the test results, when the differences in results are so substantial within the NHS. Please can you explain the reason for the differences.
I look forward to hearing from you."
TBH I'd have been accepting of...........different platforms/recommend use the same lab, blah, blah
I've sent an e-consult to the Surgery asking them to explain why I'm unable to view my FT4 results, but has anybody got any idea where I go from there if this doesn't resolve the issue? I don't think I should let this be.
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nellie237
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You should have got a response if you sent on 5th May. I think I would email a second copy outlining that you haven’t heard from them. I’m glad you are taking matters into your own hands and not just rolling over! 👍
I don't think the lab should be able to decide what results I see......or don't. Give some people a bit of power (ie They can refuse requests) and they go nuts.
If needed, you could request the information making your request clearly a Subject Access Request. Refusal of that could be awkward for them - if you carry on and complain to the Information Commissioner's Office.
You just made me think..................when drilling into test results etc on PatientAccess there is a banner (always been there) as follows:-
"Please note, some information from your medical record may be restricted from view by your GP practice."
which I've always assumed was to cover them for anything a patient might consider inapropriate/offensive etc. I think that it is being mis-used here, and just a bloody nonsense/awkward, when the results were immediately available when I asked for a printed copy. I did not have to speak to a GP to get the result.
I didn't copy the GP in on the letter..............at least I know the lab have read it, and don't like it. Time to chase it up, I think.
My 'Admin' request to the surgery asking for an explation of why my results have disappeared advised me that I should receive a response by Friday 6:30pm.
It is possible for results to be restricted on the grounds of the impact on the patient. The most obvious examples being in the general area of mental health. But also if the information refers to other people.
I think a dim view would be taken of applying restrictions without justification.
Before I wrote, I did a quick search to try and find the 'acceptable margin of error', or whatever it is called for blood results (I know I've read it somewhere) but I couldn't find it..........so, I thought I'd let them tell me.
I agree, I don't think they can justify this, aside from implying a mental health issue.........but I'd like to know how withholding my FT4 result going to affect my mental wellbeing more than say my kidney function, or TSH.
Is my mental health the reason they haven't responded to my letter too?
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.
re Helvalla's comment about restricting access to a patient's results based in the impact on their mental health this should only happen in the most severe of cases and when the patients does have the Mental Capacity to make decisions about their own health care.
Not every paragraph of this guidance will be relevant to every decision that you make with or about a patient. Your judgement about how to apply the guidance will depend on the specific circumstances of each decision, including:
the nature and severity of the patient’s condition and how quickly the decision must be made*
the complexity of the decision, the number of available options and the level of risk or degree of uncertainty associated with any of them
the impact of the potential outcome on the patient’s individual circumstances
what you already know about the patient, and what they already know about their condition and the potential options for treating or managing it
the nature of the consultation.
the guidance goes on to say at paragraph 12
You should not rely on assumptions about:
the information a patient might want or need
the factors a patient might consider significant
the importance a patient might attach to different outcomes.
and more importantly at paragraph 15
You should not withhold information a patient needs to make a decision for any other reason, including if someone close to the patient asks you to.
In very exceptional circumstances you may feel that sharing information with a patient would cause them serious harm and, if so, it may be appropriate to withhold it. In this context ‘serious harm’ means more than that the patient might become upset, decide to refuse treatment, or choose an alternative. This is a limited exception and you should seek legal advice if you are considering withholding information from a patient.
this is backed by case law and i presume that the case law is why it is specifically dealt with in this paragraph.
My GP’s are the ones who refuse to give me full patient access. Even though my hubby has it. I’ve tried repeatedly over several years but they still refuse. Just wondering if they are the issue & not the labs. Just a thought 🤷🏻♀️
When I wrote to my GP and the Practice Manager to politely outline their under treatment of my possible thyroid condition I was no longer allowed full access to my results online.
Previous to that I could see all my blood test results including thyroid ones (low in range FT4 going back many years) but after I handed my letter in all my FT4 results were n/a and I could no longer view them.
I don't feel that this was just a coincidence. It took a few requests but the surgery reception did reinstate access for me at a later date. So I'm assuming it's the gp practice that controls what you can and can't see.
Yes it was but that was the focus of my letter to the surgery, being symptomatic with a possible underactive thyroid and very low in range FT4. I only discovered my very low FT4 levels when I started using online access.
So. the answer appears to be that they can't justify withholding the results completely, but if a patient raises a difficult question we'll just make it bloody awkward to show we are in charge.
Yes it seemed that way to me. It feels almost like you're being punished for daring to write a letter/challenging their authority. In my case outlining their possible under treatment of my potential thyroid problem. I was very polite 😊
Not sure if it's just a thyroid thing though but you do wonder?
doubt it's a 'thyroid' thing .... suspect it's a generalised 'arse covering' thing ....
NHS presumably suffers from 'Institutionalised Arse Covering' .. and also a big 'attitude hangover' from when records were firmly 'theirs' not 'ours'.
Even though there are firm restrictions and penalties for anyone in NHS even accessing our records inappropriately , let alone adding / removing items from them , and they are now used to the idea that codes/ derogatory remarks in notes could now be read by patient, so anything 'obvious' is not 'written' anymore ..... i do expect there are still some things done 'under the counter' as it were...... eg. if anybody queries why those particular results were 'temporarily' not visible, the reason can presumably be given that 'those entries were being checked as a query had been raised about them '.
The criteria for officially redacting bits of our record on mental health /patient protection grounds are pretty strict , so won't be used very often ....., but i'm sure there will be a lot of perfectly legal 'administrative process' loopholes to make life difficult for any patients expressing an unwelcome interest in a particular thing .... particularly if it's a thing they look like they are about to complain about.
" if anybody queries why those particular results were 'temporarily' not visible, the reason can presumably be given that 'those entries were being checked as a query had been raised about them '. Yeah, I wondered about that................of course, if I don't chase up a response I expect they'll be gone never to return.
I believe I have Central Hypothyroidism too, and asked for all thyroid test results back to 1987. I waited nearly 5 weeks for them. FT4 is the crucial result, if it has been done at all.
I had tests done in 2014 when I felt I was really at rock bottom, very ill indeed and hypo symptoms, like b12 deficiency, blood pressure 211, huge xanthalasmas ( lumps above and below both eyes), cholesterol 6.5 and was particularly interested in 2014 result.
I wasn't given any results for a thyroid test in 2014.
My blood results suggest a pituitary tumour as have consistently, very under range FT4.
I had just had a phone consultation with a GP I have never dealt with before.
I pointed out to her that my optician referred me for a hospital eye appointment for a possible pituitary tumour in 2014, and I was not seen by the consultant they wanted me to see. I saw a glaucoma specialist.
I pointed out that correct procedure for investigation of a suspected pituitary tumour in 2014, should also have included an M.R.I Brain Scan and an endocrinology appointment, as well as the eye appointment.
Since my bloods currently suggest a pituitary tumour, I asked to be referred to Endocrinology to have my pituitary and hypothalamus investigated. I was questioned as to whether I am medically trained or not.
I have been referred to Endocrinology, but still await an appointment.
Reception staff cannot access any information whatsoever for me for the year 2014. There is nothing at all there. A GP must have blocked it off.
The reception staff suggested making an appointment with a GP and requesting it from them.
I see I am not alone in having information withheld from me. FT4 results seem to be a popular result to withhold!
It really does seem that once you challenge or make inquiries about something in your patient record that they make it more difficult for you.
Even if there's a protocol that the surgery's are following the result does end up the same they are in some way withholding your requested information.
If your relationship with the gp's are ok I'd get an appointment and request your missing results. Tell them that the reception suggested it and you need the results for your records.
Hope your endocrine appointment comes through soon. I think mine took about eight months which wasn't too bad though getting the results of all the blood tests I've had done is proving to be very difficult...
I am picking my battles! I don't think I will ask again at G.P. surgery for missing result. I only contact them if absolutely essential!
Eventually, when endo appointment comes through , I will ask the Endo for the results that are missing.
One of the other forum members in Scotland said in a post that in her area, an urgent Endo appointment took 6 months. I know from another forum that in that same area, a non urgent appointment is 3 years!
I haven't been told if i am urgent, or not. I am not holding my breath waiting for the Endo appointment to appear. My health board is at a standstill.
I hope you get the investigations that you need soon Wua,
I was told by my GP in 2007 at Hashi's dx that my next blood test would include coeliac screen, I can't see a result for this on PattientAccess and had assumed it was because the test was negative. I've been telling people on here that I tested negative in 2007, but positive in 2020,
I decided to ask for that 2007 result a few weeks ago..............the Senior GP at the practice called me to say that they couldn't find it, and she'd contacted the lab, and they had no recored of it either.......so it appears that it was 'missed'. My view is that we can all make mistakes, but why over the next 13yrs when I look at my record and see that I intermittently went with loose stools/sever nausea etc nobody thought to check.................
Thank you.Another pitfall to look out for seems to be that when you ask for results from reception they seem to automatically tell you your results are fine or normal when they are not. " Significantly high" and way over top of the range is okay to them.
I suspect that results marked "no action required" are deemed normal by them, when they actually seem to mean, lets wait and see if they kill her- a watch and wait approach.
Your test would be missed as these symptoms are IBS. As you will know, IBS means they haven't a clue what is causing the problem, and as its common, its only to be expected that you will be one of many who has these symptoms, so it is of no importance.
It will probably be common practise that they say they will check such and such and not test it at all.
I was always told that if I wasn't contacted about results then everything checked was fine. You didn't phone for results, you assumed all was fine, unless you heard otherwise.
It is like thyroid. They say it was checked and was fine.
What they fail to tell you is TSH is fine by them, but could be at a level which is making you very ill, but which the NHS deem to be ticketyboo, FT4 and FT3 haven't been checked at all, and are of paramount importance, but the NHS places no importance on them at all.
People of my generation mistakenly have trusted their G.P. when they should have been checking their every move .
Just thinking when I've emailed MMH to ask advice over using a numbing cream before doing a finger prick blood test. They were fairly quick to reply possibly within 24 hours or less (not sure now) but I definitely got a reply.
I realise that the disparity in your blood test results is a much more serious matter than the use of numbing cream but it may be an idea to email them as a follow up to your original message/letter and include the first as an attachment?
Yes they said it was ok to use it as long as you wiped it away before you do the actual jag with the lancet.
It does help me a lot as I'm one of those that struggles to do the finger prick tests. I still find it difficult but it is much less sore when doing it.
Obviously it doesn't help with the psychological fear of using the lancet as that is my main problem; I get into a right old state.
Thank you. I’ve never been brave enough to try! Always paid for a nurse. Ok when it was only £10 at my previous GPs but now I’ve moved house it’s £55 for the Medichecks nurse. I’ll try the numbing cream.
SeasideSusie gives great advice on doing fingerprick tests. If you have a read around previous posts where she's replied you'll find it. Though possibly easier to do your own new post asking advice about doing finger prick tests. You'll get advice about how to do them and best time of day (early) and other tips. It can be expensive to do them so you don't want to do anything that will give a failed result.
I asked at my local hospital if they'd take blood for me whilst I was getting consultant requested ones but they said no as it was for a private lab.
I get my husband to do my finger prick - he has no problem with it but when I suggested he should check his vits and minerals, he said “no, I don’t need to” 😂
You could raise a complaint with your local Healthwatch, perhaps.
I've also experienced similar but with a hospital specialist. Although, within this particular circumstance, I'm in the process of making a complaint direct to the hospital.
Definitely try your local Healthwatch but if all else fails, redirect your complaint to NHS England.
I have this issue too; in my case though, it is anything autoimmune I have had tested (ANCA, ANA, etc) blood wise through the NHS. I assumed my Rheumatologist deleted the positive results because they didn't fit with his diagnosis: positive ANA, ANCA and ENA panel yet he diagnosed fibromyalgia - odd really, as that 'condition' doesn't show up on scans or blood tests.
That said, I have read all of the stuff on Patient Access and realised that, in terms of the way it is worded, it is theoretically possible to use the 'mental health' clause to cover anything that contradicts their particular 'narrative', sorry, scientifically proven diagnosis. I do think, as some others have pointed out, requesting info' under the freedom of information Act might reveal who placed the restriction, and why.
I think most patients don’t bother but we hypothyroids are kind of different. I recently got all my records back to 1986 and there were definite gaps. My current doctor explained that “if my computer was not up to date, that some of the stuff could not be viewed”. Well we know updating often causes more problems than it solves and the updating has to be done again and again to iron out all the blips. He was kind enough to go through all the ‘gaps’ with me. So I am assuming that there was no skulduggery. Looking at the positive side however, I notice that some of the missing stuff is now there. I did update my own computer, so again maybe this is correct. AND they change their systems too. This also causes problems - even access at all!
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