I've only just discovered this so, please bear with me as I don't want any more confusion (like my 2nd post?!🤦🏽♀️) and also please go on my bio and scroll down to the July update I did only a few days ago to get a fuller picture of what this GP practice have been up to. Since I did that update I have in fact done a very 'tight' (no 'wriggle room' as greygoose would say!👍🏽🙂) but courteous Formal Complaint, which I emailed to the Practice Manager on Friday/ETA: having just looked at my emails, this was sent lunchtime Thursday, 27/07.
So, on 19/10/2022 I had 2 separate appointments one-after-the other:-
One was with the lovely Advanced Nurse Practitioner, Sister J, who I'd prefer to see any day rather than even one of the Dr's and, certainly, before I'd have a consultation with another *Clinical Pharmacist.* As always, she listened to my concerns and symptoms during the course of doing this senior citizens check-up I had to push for and then ensure was with her, instead of a more junior nurse I don't even know. (*see below*).
The other appointment was with one of the two practice-based Clinical Pharmacists, SM, which this GP practice seems to be fast become ruled by. 🙄
Now, the blood tests ordered on the left were ordered by Sister J at that appointment with her on the 19/10, when she was obviously concerned enough to order a full range after what she'd heard of my continuing symptoms and seen when she examined me and, particularly (I'm guessing), when I told her about, so she subsequently saw/examined, a large bruise that had started to develop and spread on the back of my left upper thigh under my bum cheek 10 months before with no known cause and was still there and very evident. I subsequently mislaid the form and even when I momentarily found it, it looked as if it was illegible so, I kept meaning to ring the surgery to ask for a replacement.
Never got round to that with one thing and another and before I knew it, I received another form in the post followed by a reminder 'text' (definitely sent in April) from the CP, SM, I'd seen on the same date.
I never noticed at the time that some of the testing requests had been removed from this second form because, obviously, the other one was still 'mislaid' amongst my paper clutter. Not any more! I found the form again yesterday and put it safely to one side. I even tried last night to see if I could book another NHS phlebotomy appointment any time soon, as I'm due to have [free] replacement Blue Horizon ones (Ferritin, Folate and Cortisol) from the specimens that had haemolysed and had decided to order an FBC from them to send at the same time and book a blood draw this time. Not a chance! Today, I looked at that form again in daylight (it wasn't illegible - I'd been looking at it in a dimly lit room and/or when there were shadows on it!🤦🏽♀️🤦🏽♀️) and would like to say I'm surprised - Spot the glaring differences - but, I'm not with what has transpired over the last 20+ years and particularly more recently. It's a surgery that's clearly struggling and being run/dictated to by both its own in-house Clinical Pharmacists (one the now retired GP's son who he'd [now] obviously lined-up to take over the practice from him, though I can only guess that in many ways he may still be pulling the strings), along with the wider PCN CP's and, most importantly, by Big Pharma. 😬🤐
Form Given To Me By Advanced NP, Sister J ---------Revised Form Sent To Me By A Practice CP
(RP) Renal Profile for GPs-----------------------------------(RP) Renal Profile for GPs
(TFT3) Thyroid Function Test (T4 dose = n/a)------------(TFT3) Thyroid Function Test (T4 dose = n/a)
(BF3) B12 and Folate
(FERRIT) Ferritin
(DFBC) Full Blood Count
(FESTUD) Iron Studies
(TPOAB) Thyroid Peroxidase Antibodies
(LFT) Liver Function Tests
It is, however, a criminal offence to alter/change a patient' record or tamper with it in any way so as to mislead or change the contemporaneous nature of the record and mine has been altered substantially - that I do know. Or, to quote Charlie-Farley from an exchange I saw on a post a while ago (I think between CF and SlowDragon ), "My notes have been doctored more than I have!"👀 and "I'm keeping my powder dry on that." (before deciding what to do). 👍🏽 I laughed out loud at both these and the whole exchange, btw, even though in reality it's far from funny and does so much damage. 😥
Well I've not only been starting to 'wet my powder', so to speak, but lining the ducks (or chickens?!) up and now it really looks as if they've come home to roost...Shocked? - a bit, as I didn't realise they'd stoop this low. I'll post some pictures later showing some of the many symptoms I suffer, including of the bruising on the back of my left thigh but, can't do that until I'm out and from my mobile phone when away from my FUBAR home set-up.
Until then I'll just leave this here and say tia.
PRJ x
ETA: Apologies for the way this looks on mobiles (just viewed whilst out). The tests linked by --- reading left to right are the ones that were on both blood test forms; and all the ones at the bottom not linked were the ones Sister J ordered but, were subsequently removed - by one of the CPs or one of the 2 GPs, I don't know(?) but, intend to find out, particularly as I've recently exchanged PM/Email with DJR1 (Di) over the access (or refusal of access) to records issue who, rather worryingly, confirmed that "we (particularly GP's) are going backwards" 😟 - my practice would seem to be right there with that one...to the dark ages. 😰 This is utterly alien to me, having been given free access to my notes by my GP, Dr A, until he left that practice just before Easter '94, which I believe was probably before any (or much) specific legislation came into force over the issue(?).
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This was the bruise taken by one of my sister's during a visit on 11th January 2022, which was about 3 weeks after I first caught sight of it in the mirror of a supermarket disabled toilet. I'd had no prior injury or anything, just a bit of 'soreness' round that area, which isn't unusual in that I suffer aches & pains, etc, all over my body.
Bruise 11th Jan 2022 about 3 weeks after 1st noticed 😕
Taken by myself (with some difficulty due to position & normally being right handed! 🤨) 6 months later - 22/06/2022 - although not as clear as the 1st one, it does (I think?) show the spread and the darkening. By this time, there was no specific soreness with it and by the time I saw Sister J on 19 Oct., it had probably spread a bit more and was as bruised looking (almost black) as ever 😟 - yet, still no soreness.
Same bruise taken 6 months later on 22/06/2022, showing spread & darkening. 😟
Thanks LindaC oxo Yes, I intend to keep at it: this surgery has seriously compromised my health and any treatment I seek; not least because I'm going away for a while/just short of 3 weeks on Thursday; I dread to think how I'd be treated if I fell ill whilst away, particularly if I was unresponsive and wherever I was had to rely on the 'records' this surgery holds (particularly my [supposed] SCR...an utter shambles of lies, twisted 'fact' and ignorance...it's like reading someone else's 'history'); and I have no intention of letting this drop now I've started the ball rolling with a formal complaint.
In my covering email - to which I attached not only my formal complaint letter; but, copy of 1st letter of 16/06 applying for on-line access to my records, particularly my results; and a copy of the part of the GP contract that DJR1 advises to quote at them, which I'd also provided a link to [the full contract] along with other highly relevant links (i.e. to BMA, NHS and even the MDU) in my complaint letter - I ended by saying that if she didn't respond to my complaint in a more timely manner than she'd yet to reply to my 1st letter, I'd consider forwarding them to both the CQC and ICO.
Not a threat. I'll do it, particularly if they continue to treat me like an 'idiot' who has absolutely no rights.
As you say, something will or has to give somewhere...surely? We certainly cannot keep going in the direction (downward or backward trajectory) we are at the moment...surely?
Again, thanks for your response, and all the best back to you. ((Hugs)) oxo
This one of my right arm was taken on 8th August 2021 a few days after a blood draw. I'd been feeling generally unwell for a few days (not unusual) with a raised gland in my neck on the right side along with a bit of discomfort and swelling under my chin on the right side just to the right of my thyroid gland - all symptoms I've had before that keep recurring.Although I'd had my 1st and 2nd COVID jabs (mid-March & end of May '21, respectively) and was still mainly self-isolating (placed in the ECV group from just after the start of the pandemic); always stuck to social distancing, mask-wearing, using anti-viral hand gels, etc, when around others; and was also still 'washing' grocery deliveries and just generally being very cautious, I decided to test for COVID - Negative. So, I rang 111 and was triaged for one of the Dr's deputising at my GP surgery to call me back. When he did, he was sufficiently concerned by my symptoms to make an appointment for me to be seen at one of the walk-in centres early that evening after checking to make sure I was OK to get there.
The Dr I saw there was lovely and very thorough in both his examination and checking out with me my history, as well as my symptoms, again, which he'd received communication of from the other Dr. He sent me for blood tests (fortunately, the phlebotomy clinic was still running at that walk-in centre); immediately started me off on a 7 day course of anti-bios; and told me that, depending on the results of my blood tests, he would write to my GP to recommend a referral under the 2 week protocol.
A couple of weeks later I got a copy of the letter he'd sent to my GPs asking them to refer me under the protocol, along with a letter from the GPs with an allocated phone appt with a GP I'd never heard of (turned out to be the 'new' GP at the practice who I've had subsequent problems with, though I've only spoken to him this once when he was initially acting as a locum) a couple of days later and the instruction to phone and change if the timing wasn't convenient.
The phone call with him was very strange: not only did he persist in being very wrongly 'formal' (calling me Mrs Surname after I'd pointed out I've never been Mrs ....., I'm Ms and he could call me by my preferred [shortened] christian name...In response to which he told me "that would be considered rude in my culture!" 😵💫🤔); but, he asked me more than once why I thought I needed to be referred to see a Consultant...at all, never mind under the 2 week protocol?!! 😯😳 I 'thought' the letter from the Dr I'd seen and who'd actually examined me, etc., explained that! 🙄 (seemingly not for him! 😬)
Taken 8th August 2021 a few days after a blood draw...
As detailed under the photo: taken 12th November 2021 during what I believe to be a Hashi/AI flare(?). My face is visibly puffy and under my chin visibly swollen. Eyebrows have totally changed over the years; the chin hairs, some of them visible here, always come back after removal (GP has positively dismissed these as "a normal sign of ageing" even though I pointed out to her that I've been getting them since I was younger after I was diagnosed with an AITD...since my system has been out of whack); and my hair has thinned.Whatever 'it' is, this disease/disorder is fluffing hideous and so disfiguring, as well as exhausting...😢
I have other photo's I've documented since I got this 'smartphone' but, haven't been able or had the energy to disguise/anonymise due to the IT/IP problems I've had so, this and the next one are just two examples.
Taken 12th November 2021 during what I believe to be a Hashi/AI flare 😞
Sorry to hear you are having such an ongoing fight. When things appear overwhelming and we feel unheard, I find it helpful to regain own focus by noting important issues in bullet points without all the history.
Bruising-
Meds such as blood thinners or steroids can cause bruising but also autoimmune issues where we don’t work as well, and age where blood vessels just become fragile and leak blood that pools. The reasons for this happening can also contribute to preventing that bruise from healthy healing.
The classic deficiency known for healthy blood clotting is Vit K. Have you had this tested? Some GP’s can test Vit K directly or will test your ability to clot blood. Vit K can be given by injection.
Also have you had ferritin, Vit B12, folate and Vit D recently tested? These are commonly low in people with thyroid conditions and many people have to ongoing supplement to maintain healthy levels.
Hairs on chin -
are a sign of elevated androgens (male hormones such as testosterone) when ovarian insufficiency or failure means low oestrogen and progesterone levels.
If you are premenopausal (possibly with ongoing period issues) a common cause is PCOS. If you are menopausal, then HRT may be offered to rebalance sex hormones but is dependant upon other health conditions and risks such as that of cancer or stroke. Ask for a discussion with your GP or surgery menopause nurse regarding an agreeable solution. Just because chin hair is a sign of aging, it doesn’t mean you have to put up with it.
I hope you find some answers soon, and meanwhile let it all out here as many have suffered the same ‘neglect/gaslighting/contempt/etc 🤗
My 87 year old mother has had similar problems with nhs lab work, doctor asking for tests and labs not giving their green light. Frustrated we went private and found she had very low ft4, b6 and b12. Only then did they sit up and take notice. It is still a battle however.
Hi sorry you have these problems - I too have terrible bruising - we mustn't forget about low vitamin C - there is a new 'buzz' name for it now - Vitamin C anaemia. Vitamin C is needed by the adrenals and can run very low when the adrenals 'grab' it because it is needed by them.
Hi, many years ago, over a decade so well before covid and excuses, I had seen the GP and she had put in a request for my annual blood tests. I always get a print out and when realised one was missing from the results when comparing, I saw the GP again (the good old days when you could get an appointment!)
When I questioned the GP about phoning the lab to find out why she said she already had. And said quite unconcerned, 'Oh labs are always doing this' I replied, 'Surely not, that's against patient interest. How can they go against a doctor's request, who knows the patient history and has a reason for the request!'
So I phoned the Patient Service at the hospital (known as at that time) where the lab is to complain. The person I was put through to deal with complaints /questions took this seriously (no doubt I was fuming , straight from the GP's) and said she would phone me back after looking into. Within 10 mins I received a call from the head of the Lab. He obviously had my blood test request in front of him as quoted from. He was profusely sorry and said in no way would a lab ever countermand a doctor's request as for one thing illegal. He had looked at the form and the problem had been the GP had completed the form incorrectly putting that particular test on the wronf side of the form and the technician therefore had not seen it. That unfortunately they couldn't now test as too many weeks had passed and I would unfortunately have to have my blood drawn again
My conclusion, The GP had lied to me. She hadn't phoned the lab and was not concerned that I hadn't had the test. I honestly thought they never would lie, that it was against the hypocratic oath. I had my eyes opened, doctors do lie. I didn't do battle with her - I was too ill. I just made sure I never made an appointment with her again. She is still there and now a partner, I should have challenged her!
Hippocratic oath became optional many years ago. It’s a blessing you are able to deal with such “challenges” when sick. (I had a dr who refused to give me a copy of my own medical records & one who forgot to to do pre-infusion testing.)
The drs often “cover” for each other - so a second opinion is often worthless.
Affirmative action, quotas, $$$, government regulations & lowering standards has made poor medical treatment frequent in USA, despite medical advances.
I guess we just keep battling on, fighting the system. I like the doctors trained in India best, they seem to have more of an idea of how the body works as one whole system and natural care / Ayurveda. rather than being the puppets for Pharma
just caught this - I’m not surprised so sorry you are going through this 😔. I would keep meticulous records. If they prevent access to your own you can have your alternative. I get printouts of everything since I was diagnosed with Hypothyroidism. Our surgery has online patient access and I took screenshots of everything before I raised the issue of being mismanaged. Then records disappeared - and I took more screenshots 😉. With the before and after records the alterations are as clear as day. However if I didn’t have those screenshots you would only see something was “off” if you looked forensically at the records would you see they are incomplete, but a cursory glance it could be missed and the omission of a few select records has altered the timeline to read in a completely different way.
Just a quick thank you to all who replied to my post before I finally go away on my long-awaited (longed for and much needed) opportunity to get away and 'relax', particularly with my tribe of fellow bereaved parents. Your support and experiences are so, so appreciated as always and almost instantly relatable, it's like someone holding up a mirror and saying, "Yes. Me too! Look no further.", which I find really validating and, therefore, less alone even though we are all fighting our own battles with what this disease (and the ripples from it) throws up or at us.
I'm so sorry I haven't responded to your replies earlier or (as yet) individually: preparing to leave for my first proper 'holiday' away in I don't know how long (years) that, since Monday, with the arrival of both my older sisters together (very different in their approaches is all I will say for now but, at the same time when they're together, it's like listening to and being with only one, iyswim?!) has been quite 'stressful' and I knew I couldn't afford to let myself be stressed by them or the situation so, have had to remain focused on just preparing to get away. However, I will respond to all of you individually, as well as update the post with more developments, as soon as I get the chance whilst away.
In the meantime, take care. Keep battling on. Keep records (preferably in hard copy form...the Luddite way!...I'm personally so grateful for a paper trail, as it shows who hasn't a clue and that sure as heck isn't me!!) - they're invaluable - and thank you again to this amazing and knowledgeable community.
PRJ20 xx
PRJ20, I'm so sorry for what you're going through. And particularly for all the unnecessary wrongs done to you. It’s shocking that your medical notes have been interfered with, deleting information that could have an adverse impact.
Good on you for keeping exemplary records -hopefully, that'll teach them something!
I’ve had nothing like what you’re going through -yet.
But, just yesterday, had a minor taste.
At my 9am Dr’s appt, I had missing thyroid function tests amongst all the other blood test results -before my 1pm appt with a hospital specialist. The TFT results were the most important information.
(NB I was referred by this Dr to a hospital specialist for fatigue, without my knowledge or request and while I still hadn’t completed the first 12 weeks NTE or second titration).
After chasing up the missing TFT results directly with the lab (my dr certainly wasn’t going to help with that) and ringing a second time in the morning after the lab said the results would be there -they weren't.
Anyway, the circus continued with the afternoon specialist appointment. The specialist (a “very strange” one like your new dr) asking random questions unrelated to fatigue, let alone, thyroid issues.
Then he kept asking if I felt pain (I said, no, three times!) but he ignored me and insisted on physically probing parts of my body.
He did this early in the appointment without a chaperone, without any reference to my culture, and most importantly, giving no explanation for the invasive physical exam (parts of which were previously just done by the nurse) and therefore, for no valid reason!!!
(Luckily, the nurse later interrupted our appointment twice, knocking and opening the door, just to say the laboratory had NOT provided the results. Was this specialist being randomly “supervised”, I now wonder).
Anyway, it was creepy, it was stressful. But I felt I had no choice at the time because if I refused to submit, then my local dr might use it against me to stop prescribing NTE. -Sorry, venting here, didn’t sleep well, still upset. (I actually emailed a complaint to the hospital this morning.)
A similarity to you PRJ20, was my local Dr once suggesting seeing a nurse practitioner -I think Drs don’t want to deal with thyroid issues. (I’m spending a fortune on NTE without having to incur the exorbitant cost of a nurse practitioner on top.) My local Dr has also, persistently, requested blood tests for T4 instead of FT4, completely omitting FT3 and then emending after my request, with only T3. There are so many ways to be obstructive.
PRJ20, you have so much to endure, without the extra stress. Good on you for following through and keeping your records honest. I admire you for persevering through a lot of hardship.
Anyway, I’ve taken a long way round to say to you PRJ20, that I also think that Drs appear to be doing the same dodgy practices the world over. -Deduced from all the experiences related on here, including mine and yours.
And thank you for giving me a smile by quoting Charlie-Farley: "My notes have been doctored more than I have!".
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Sorry no link, it's from an ad site, but still a good read: Improving Thyroid Hormone Conversion
Update #10: The Adrenal Gateway
