I've finally (last week) started taking the bull by the horns, so to speak, with this practice and:
* Booked-in for an NHS blood test as a result of an appointment last year (Nov) with one of the practice nurses whose always been really good whenever I see her. I had to really push for the appt with her (supposed to be checked annually for a long time, due not only to age - 70 last year, turned 71 in March - but, to numerous chronic health problems) as this practice kept fobbing me off with appts and 'reviews' with one of the Clinical Pharmacists and/or a referral [back] to mental health services. The form she gave me was barely legible and what with one-thing-and another (already approaching Christmas and New Year, followed by a string of significant dates every month right up until the end of May...17 years since the funeral of my beloved Z 💔😭...before I start another year on this hellish journey...) I didn't get to go back to the surgery to get the form re-printed (avoided at the best of times, anyway, as they're so dismissive) and sort of 'forgot' about it/put it on a back burner but, did get a new, now clearly legible form fairly recently by way of a reminder...via one of the said Community Pharmacists (according to one of the receptionists: "because it's April, which is the beginning of a new [financial] year for us!" 🙄). So, this is what I've been put down to be tested for this time:
(DHBA1) Glycated HB
HBA1c (requested for = Monitoring)
(DIALIP) Lipid (Non Fasting)
(RP) Renal Profile for GPs
(TFT3) Thyroid Function Test (T4 dose = n/a)
I had to specifically request the TFTs and for antibodies to be included by pointing out, politely as I had done in a joint email to the Practice Manager and [since retired] Principal GP in Feb last year, that I had been diagnosed with an autoimmune thyroid disease in '93, which is lifelong. Thus, as I've never [yet] been 'allowed' to see any results (nor anything much else, really!) since I took legal proceedings that ended-up being statute barred in 2000/1 but, when I know my records were 'marked', I haven't a clue whether they'll be as limiting as previous ones or what TFT3 even means? We'll just have to wait and see! 🤫 Anyway, I've booked in for these on Wednesday, 21st, and managed to get a 7:30am slot - is that too early? - as regardless of the need not to fast for the Lipid profile one, I certainly won't be having anything to eat before I leave home at that time in the morning, as I would prefer to get as true a picture as possible in relation to the TFTs as per the advice given on here for that testing.
* Also last week (Friday), whilst outside the practice pharmacy, waiting for the queue to go down (I can't stand for long now, with what the Orthopaedic Knee Reg I saw at a follow-up appt in 2014 as having been picked-up on X-Ray as "a crumbling spine" and was finally diagnosed later that year [as "multi-level disc degeneration"] from an MRI scan - to add to "the Global arthritis" diagnosis I was also given), I decided to start the follow-up to the said email I wrote to the Practice Manager and wrote a hand written letter applying for access to my records, both prospective and historic (I kept a handwritten copy!). Initially, I thought I'd just be able to get one of the items (for Braltus) on my repeat prescription list that I'd omitted to order and was about to run out of over the w/e straight from the pharmacy and my intention was to just pop into the surgery and leave the letter/request for the PM at reception (I had an envelope). Cut-and-run, if you like, and wait for the 'response'!
However, as 'luck' would have it, the pharmacy couldn't dispense the item without a Dr signing another script for it so, I had to go into the surgery and had a bit of a wait (about 20-30 minutes) until the receptionist could get the only Dr there free to come and sign it. Quite an interesting wait, considering all the back-peddling and cover-ups I've cottoned onto that this surgery is now doing. In a nutshell, the Dr who was requested to sign it was a fairly recent addition to the practice - i.e. sometime in 2021, who I only thought was temporary but, is now an 'Associate' - who I've never, ever seen before so, wouldn't know from Adam, and have only ever spoken to on the phone once when we had a very strange conversation when he kept insisting on calling me Mrs (which I hate, as I've never been married and, though I did change my name to my ex common law husband's when I adopted the Mrs title with his surname, that was years/decades ago, since which I've changed back to Ms with my birth surname and all of my records are as Ms...or at least those that aren't missing or have been 'doctored'!!). I've got tired of asking this surgery to not call me by my full christian name as well (it has really negative connotations for me associated with the childhood trauma I went through) and have even requested they record on my notes my preference of my being called by my shortened christian name I've always been known as. When I politely pointed this out to him, he said he couldn't possibly call me by my christian name as [if I heard him correctly as a senior citizen] I was "old enough to be his mother and that would be disrespectful in my culture" (he's Greek, apparently?! 🤷♀️) and proceeded to continue calling me Mrs!! 🤦♀️ There's also another factor with this Dr in relation to him refusing to prescribe the only medication I've found that will relieve the agonising muscle (and ? bone) cramps I get in clusters since I was Dx with fibromyalgia because he claims that "they can't be prescribed to someone with Sleep Apnoea." I've never been Dx with this ever: sure I had an appt with one of the 2 Dr's there before his time about sleep paralysis (a whole different phenomena, which is known to be associated with trauma ✅✅✅ as well as insomnia, jet lag and [I guess] lack of deep restorative sleep ✅17 years and counting for the latter). So, I'm sat there thinking, "this is going to be interesting!" when a very tall, grey-haired and grey-bearded guy walks past me and ended up going into the reception area, standing against the back wall of the reception so that he was facing my way but, blocked from my view due to a partition wall so that only a bit of his left side was visible. Sure enough, within a minute of his arrival and talking with the receptionist, she leaned forward to close the slats at the bottom of the glass/perspex screen to ensure I couldn't hear what was being said! So, obvious it cracked me up!
Now, I'm lining everything up (see following copies of redacted documents) and need your help, please, in dealing with this surgery before I change because, I honestly can't take any more...
Sorry for the length/rant and thank you for reading if you've got this far...I just need to get something moving...
P x
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PRJ20
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Page 1/6 of 2 page GP letter from March 2016, which was how I got the 3 page SCR and please note how he puts HYPOthyroidism as the 9th on the list ? A 'Freudian slip'(!), as I did have a conversation with him a few months after registering with him in June 1997 once my TFTs had come back to 'normal' after I'd had Homeopathy (Nat Mur) and been listened to/heard by the lovely Homeopathic Consultant (also a qualified Medical Dr when he told me that what happens with Graves' Disease is that it invariably burns itself out and you end up with Hashimoto's Thyroiditis and he knew this because, he used to work in Nuclear Medicine as a Registrar before he became a GP. He later [sort of] retracted that (can't remember exactly when) by telling me I was "wrongly diagnosed" 😮
Page (from a printout) I got the Practice Manager to print out in 2018/19 after I came across the 6 page version of the SCR when looking for something else and noticed the discrepancy of the date when I was 'Registered' with them, which is also there on the 3 page SCR - i.e. 23-May-2006 - when I had actually registered both Z and I with this practice on 13th June 1997. When, I phoned up to point out this was wrong, she told me "No. It was Correct - that my records had gone back to the Family Health Services Authority for my change of address." I hasten to add: I CHANGED MY ADDRESS - FROM FLAT 1 (GF), TO FLAT 2 (1st F) IN THE SAME HOUSE SINCE 1987 SO, A SIMPLE, SINGLE NUMBER CHANGE - IN SEPTEMBER 2000 AND HAD ALREADY INFORMED THEM OF THIS AND HAD IT CHANGED ON MY RECORDS. Fortunately, I'd already viewed my psychiatric records with a MH Advocate, who'd already got them to send me copies after we'd viewed them so, I already knew that MH hadn't redacted something on the bottom of at least one of what looked like an admin sheet which clearly stated "last trace 2006" so, I knew they'd been 'tracking me' as I'd had no further contact with Community MH Services after taking my own discharge from an acute psych ward in June 1994 and I just simply asked for print out. So when I could I started doing some digging after a while and eventually came across this article from the BMJ dated 12 June 2003 bmj.com/rapid-response/2011... stating that FHSA's disappeared in 1994!...
Detail of how my entire GP record was sent to a non-existent FHSA in 2006 for CofA.?!
P1 of a comprehensive version I'd done out on my Amstrad pc of all my TFT results up to May 1997, which I had access to through legal proceedings and have never been allowed access since.
And the last one for now, 'To Whom It May Concern' Letter from the first Endo Consultant I was referred to...A Real Numbers and TSH/T4 Man, as per..........
TSH/T4 dictated Carbimazole treatment by the 1st Endo until I was [strictly] 'Euthyroid'!
1) yes, 7.30 am is fine for a thyroid blood test (the TSH may be slightly higher at this time than it would be if tested at eg 9 am , but this isn't a problem , as we always want to see the highest TSH anyway )
2) you have not been clear about what is bothering you about your record ?
what exactly is it that you think needs correcting ...
~ they say their records show you as having an over range thyroid hormone blood tests in 1993 ( thyrotoxicosis )
~ and that the cause of your thyrotoxicosis was diagnosed in 1994 , as being due to graves disease (autoimmune hyperthyroidism )
What is it that you think needs correcting ?.. the dates on the summary record ?, or something else ? (sorry if missed it , but your post is convoluted and hard to understand clearly)
if it is just the dates that are wrong , does that actually matter ? , it is quite understandable that there may be some small discrepancies/ confusion that creeps into dates in records that are this old, especially when they are transposed to summaries over the years ,
is this difference in dates causing you some problem with your current treatment ? ....
or are you bothered about the word 'thyrotoxicosis' without any mention of 'Graves' on the summary ?
Note to the Consultant Endo who he also led to believe that I had "Thyrotoxicosis - not Graves' Disease/AITD with GED - caused by my taking Thyroxine" (I wish it had been that simple or I would have sourced some years ago!)
Anyway, I've booked in for these on Wednesday, 21st, and managed to get a 7:30am slot - is that too early?
It depends on what result you'd rather have. Do you want a higher TSH? Do you want a lower FT4? If you look at the attached image of daily rhythms of thyroid hormones then you'll see that at 7.30am:
TSH is showing lower than at 9am.
FT4 is showing lower than at 9am.
FT3 too little difference to worry about.
Sorry I can't comment on the rest, it's too complicated for me to get my head around.
So, basically I'd be better going at 9, rather than 7:30?
Basically, I'd like the TSH to show accurately (on the NHS ones, too) what that reading is as I believe I've gathered from all I've gleaned up to now that with TPO Antibodies of over 4 times the range - 1:1,600 (<1:400) -when Graves' was originally Dx, I want the results to, hopefully, reflect the autoimmune side of the Hashimoto's this GP originally said it would eventually become/burn out but, then retracted that statement and said I'd been wrongly diagnosed (my guess is on the instructions of the Area Health Authority).
I'm also going to arrange some private tests through here and have been researching having a Private Consultation with an Endocrinologist who also specialises in Metabolism I've found at a local Spire but, not immediately local in the NHS - a Professor who gets really good reviews.
I'm sorry for the confusing post, I'm just having a really 💩 day, missing my baby like mad and every time I've turned to or trusted these people (Dr's) in the past, they've let me down and betrayed me; they've made so much stuff up about me, I already felt like I was going mad before I emailed my practice last year; and now they've even removed all trace of my daughter (as well as previous trauma) from my records - i.e. to look at my SCR I've posted here and a more recent one I've got from 2020, you would think I'd never seen a doctor before I registered with this practice, never mind born and lost 2 children (1 was a medically necessary termination at just under 4 months due to foetal abnormality; the last was my darling 23 year daughter following a RTC) - and I really do feel like I'm going mad with them doing that. They understand diddly squat about trauma and just marginalise people and try to pigeon hole people. Well no more for me - I've had enough...
So, basically I'd be better going at 9, rather than 7:30?
You probably know that we normally advise a 9am (or close to) blood draw. This is purely because most doctors adjust dose of Levo by TSH and to avoid a reduction in dose, or to achieve an increase in dose, the highest possible TSH is needed and as you can see TSH is higher at 9am than 7.30am.
On the rare occasion that a GP might prioritise the FT4 over the TSH then that becomes the more important result. A very high FT4 (over range) might prompt the GP to reduce dose of Levo.
So whichever result is more important in your situation then time your blood test accordingly.
Neither: they knackered my Thyroid with their upping and over-prescribing of Carbimazole after my GP of 9&1/2 years left when they overturned his titration method of treatment because they reckoned I'd caused [simple] Thyrotoxicosis myself by taking Thyroxine...I kid you not tatty! 🙄 The last strictly what you could call Endo related consult I had was with the Dr/Consultant in Nuclear Medicine after my test dose of RAI and scan (May '97). Conversation went roughly like this:-
Cons: "Well Ms J. The scan shows that you have normal looking thyroid tissue and these are your options now, as you appear to be non-compliant on medication even in high doses: either we destroy your thyroid with RAI ablation treatment and I believe you've been given the information leaflet on this, or you come in to have the thyroid removed under surgery..."
Me: "Sorry Dr, could you just run that past me again please?"
Cons: Runs above past me again in a slightly shortened version.
Me: "No thank you!"
Cons: "But, Ms J, your blood tests show you have an overactive thyroid that has either not responded to treatment or you have been non-compliant...[Condescendingly] I understand you have a young special needs child who is still very dependent on you so, this may be a difficult choice for you but, again, your blood tests show you have an overactive thyroid that has not responded to conventional medication so we need to take your thyroid out!"
Me: "I understand what you're saying Dr but, you've just told I have a normal looking thyroid that you want to remove going by blood tests only, which in my understanding are very limited, and I'm saying 'No thank you' to both RAI ablation and surgery." Even with my limited understanding of the thyroid and its working at that time, I knew not to destroy something that was normal (would that be like shooting the messenger?!!) and that removing it wouldn't resolve an autoimmune disease, anyway.
Her last words to me were; "You'll be back!" - I muttered under my breath as I left: "No I won't!" and until my daughter was killed in May 2007 and ended up on life support for 36 hours in the same hospital (everyone was absolutely wonderful), I don't think I'd stepped foot in that or any other hospital in the city after - so, 10 years.
No treatment for AITD/Hypothyroidism since either, once my TFT's showed 'normalisation' after Homeopathy, despite being increasingly symptomatic over the years particularly after further trauma (caught up an attempted armed robbery at my local Post Office Jan '99 when I was the only customer in there and had a gun waved at my head; and then the last heart breaking trauma which claimed my precious daughter's life in May 2007); only occasional blood tests over the years; not allowing me access to my records over the years; and, though I have had the occasional TFTs over the years, I've never been allowed to see them and as each ensuing health problem has arisen, my health has got worse, I've invariably been offered anti-D's or brushed off with the 'offer' of a referral to Community MH services and certainly had to fight for any referral's I've had until now I'm just running on Empty...InVaLiDaTiOn can actually drive a person mad/make 'mental invalids' of them according to late Psychiatrist R.D. Laing...don't I bloody know it tatty. If I had £1 for every lie and made up garbage I've read in my notes or had implied to me, written about me/etc., I'd be living the life of luxury.
Sorry for the further rant tatty...Just so tired of fighting...
a few days after the test ,(once the blood results are back and the GP has seen them) ask the receptionist to give you a printout of that set of thyroid blood results including lab ranges ,
post them on here and people can help further .
Do the same for all future thyroid blood tests .
as for all that past history ..... this is going to sound harsh , but really there's nothing you can do about it , you have a very significant MH history , and the comments relate/ refer to that , so nothing on your notes will be removed / changed no matter what you do , and there is no point wasting huge amounts of your energy trying to to do so..... and if you appear to be getting obsessive about it, then you will just be confirming the impresion that is given about you in your notes .
So draw a line under what has been written in your notes and start from now.
Find out how your thyroid is doing NOW .
stop worrying about what happened to it in the past and who said what to who about you .. it makes no difference to what your thyroid is doing now , or to whether you need any treatment for it now......... going over old/ disputed ground like this will just bring you more trouble ....... leave it be and focus on what you need to do now, not what happened in the past.
Looks like we could be in the same boat 🤷♀️ for a total year I went back and forth to my gp with awful symptoms which I knew were thyroid related.. Firstly I just want to say we should always get our result of blood work and reports on any consultations we have done) I never did this and trusted my gp, I will never do that again 😠.
Upshot was I collapsed several times at home the gp keep insisting it was my menupausal state and nothing to do with my thyroid, my last collapse my son got me to the surgery where I saw a new gp, she immediately told me I had an overactive thyroid 🤦♂️ and she would need to take bloods I got the results the very next day when she called me back to the surgery.
She was concerned I'd been coming back and forth for a year with my normal gp not doing any thyroid bloods whatsoever 😠 I was put on anti thyroid drugs but just kept vomiting them back they also affected my colitis, I tried contacting the gp who'd diagnosed me but she'd left🤦♂️ so back to the awful gp who couldn't Diagnose me, he was awful in the appointment😢 in no uncertain terms told him I was correct in that it was my thyroid not the menupause, he never made a comment and just printed out a prescription for the anti thyroid drug saying I had to persist with it as the side effects would lessen.
They didn't and again after several phone calls saying I was struggling to stomach this medication he changed it to ptu which unfortunately gave me the same side effects, I must also point out he never did any further thyroid blood tests eventho I'd been trying to take the anti thyroid drugs for around 4 months.
I went into thyroid storm and we're rushed into hospital where my t4 was 100 T3 39.6 TSH not detected!!
After 6 days I finally saw an endo and it was then after an uptake scan I was diagnosed with graves thyrotoxicosis 😢 unfortunately the endo recommend I have thyroidectomy as there was no saving the thyroid it was slowly poisoning me i had it removed in 2019.
My son who was so bothered about how much weight I'd lost and how I looked, was at least relived to find out it wasn't cancer because he honestly though I had it😢 he later requested my full medical records and in there we found a goldmine of stuff, some I wanted to ask my gp about but due to covid I was not allowed to see a gp😠 some derogatory remarks about my divorce were mentioned, in that my ongoing problems were probably due to my marriage breaking up... I was the one who wanted the divorce for god sake I was happy we both were, if my gp had bothered to ask I would have told him😠
Going through my records my son found a report from 2014, my gp sent me to this specialist after he did some bloods, in her report (remember I'm reading this for the first time in 2020) this lady has a short suppressed TSH with episodes of thyroiditis, and subclinical hyperthyroidism I recommend you do regular thyroid blood tests in light of her suppressed TSH and thyroiditis... My gp never did this🤦♂️😢 so I just continued to become more unwell until my thyroid eventually gave out.
I've learned a lot about gps and endocrinologists over these years and looking over the mess that's in my medical records it's a wonder I'm still here, like yourself I want answers to what's in my medical records and what's been woefully missed, but I'm not at all well at the moment.. Struggling with thyroid medication and a parathyroid hormone problem to boot.. (seeing a specialist in Liverpool on Thursday 🙏) but I won't let this go I need answers 👍
I do hope you get your answers to👍 it's not right the way we are being treated by the so called medical profession who are supposed to be helping us.... I fear those days are gone😢😢
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Update on Visit to GP this afternoon re Getting Blood Tests
Blood tests annoyed with GP!
how to deal with TSH obsessive GP?
Blood tests, T3 and talking to GP
A huge thanks to Thyroid UK for showing me how to deal with my GP!
