Request for full medical history: Im considering... - Thyroid UK

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Request for full medical history

43 Replies

Im considering requesting my full medical history. Has anyone done this before? Did you find it useful? How long did it take and how much did it cost? Any advice or opinions would be great fully recieved.

I seriously considering this as I now find myself thinking about the symptoms ive had for years and the responses I've had from my GPs.

When my last results came through re the Thyroid Function my doctor was happy to just tell me I had some antibodies and would complete another test in another year. No info no explanation of what this meant?!? Since I've joined here I have found out so much (and am armed with more info to investigate what is really going on with my health)

I am now wondering how many other times/ other symptoms Ive had over the years have perhaps been written off as 'normal' when perhaps they may indicate an underlying problem (my memory is so hazy and I can't recall so feel my records would help).

Really making this my mission to get back on track..I want to be the best mum and girlfriend I can be..instead of being a hibernating grumpy bear 😳

Thanks

43 Replies

Yes, everybody should do this. Time after time on here we're seeing posts where GPs know diddly squat, let alone know about thyroid disorders.

I discovered I'd been hypo for longer than I thought and, frankly, I would never trust a GP with my health.

This link will help:

nhs.uk/NHSEngland/thenhs/re...

I was charged £50 for copies of 14 years worth of medical records despite being told it would be between £30 and £35. At some point I will request to view the earlier ones.

Knowledge is power.

in reply to

Oh wow! Thank you! I'm glad you found this a useful task! £50 is nothing for peace of mind and answers ☺️ The link is great think I would want a copy to work they at my own pace and make notes. Did they take long to come down?

Chippysue profile image
Chippysue

I asked to see my notes but it was just referral letters not doctors notes

in reply toChippysue

Hey suze, oh ok did you find it useful? I'm thinking of requesting the whole records, I need to make sense of everything really ☺️

Chippysue profile image
Chippysue in reply to

I did because I could see what dr had said when referring me. Don't know if you pay whether you have everything

in reply toChippysue

Oh right ok...what I ight do is actually have a chat with my doctor first then as I am really only interested in info that's goingto help me make sense of my symptoms and results ☺️

I'm glad you found it useful

Chippysue profile image
Chippysue in reply to

Have you discussed your symptoms and blood results on here? I don't trust doctors at all, not their fault entirely as it's what they are taught and guidelines they have to follow.

I have been well for nearly 4years, and guess what? It's nearly 4 years since I saw a GP! If I did then they would insist I lower my thyroid medication and if I did I wouldn't be able to get out if bed!

I am well because I am informed and persistent and challenged each GP and tge 10 specialists that I have seen!

Sue

in reply toChippysue

I have put my blood results on here yesterday ☺️

Yes I think the thing is now with doctors, they perhaps have very little time to look at the bigger picture!

My current doctor I'm getting along with, she ordered the test (then referred me to endo even tho she was reluctant to)

My hope was that I could perhaps find a trigger or underlying cause in my history 😏

Chippysue profile image
Chippysue in reply to

Do you have thyroid disease in the family? Do you have thyroid antibodies? Are there any other autoimmune diseases in the family?

Which area do you live in? We may know something about the Endo that you will see.

Sue

in reply toChippysue

My brother was diagnosed with thyroid problems last year which set me to thinking. I also found out my grandmother had her thyroid/goitre removed.

My results for TPO antibodies was 176H (<50) my endo and doc said my other results are in range.

He said he will test the adrenal, food intolerance and steroid level...so riding this one thru ☺️

Chippysue profile image
Chippysue in reply to

You have positive thyroid antibodies! they are attacking your thyroid.

Have you been diagnosed? are you taking levothyroxine?

in reply toChippysue

No my endo said as my other results are in range that medication may not solve anything, he is going to run other tests. I got the feeling he thought it was something else

Chippysue profile image
Chippysue in reply to

No, you are hypothyroid, they only diagnose you when your tsh is above 10, what is your free t4 result? and your tsh??

The thyroid antibodies are not having a party! They are attacking your thyroid, the sooner you are taking thyroid medication the better.

Most of us hypo's have b12 and vitamin f deficiency too, have them tested! and how is your folate and ferritin too?

You have to be informed! Your doctors don't want o diagnose you!

However they would love to earn money from you from statins, anti depressants or bp meds!!!

in reply toChippysue

My TSH 1.58 (0.50-5.00) Free Thyroxine 10.7 (10.0-25)

Prolactin 135 (64-395) I haven't had the others tested but it's on my list of things to ask. I'm definitely being more proactive ☺️

Chippysue profile image
Chippysue in reply to

Your free t4 is the important one and in on the floor but your doctor thinks ok as in range, I won't swear !!!

How can you possibly feel the same with either a free t4 at Rock bottom or at the top?? This is how much thyroxine e you have in store. I can tell you as mine was rock bottom and now it is at the top that it's much better at the top!!!

Your free t3 is the active thyroxine, as you don't have much in store your free t3 will not be good either.

But they go by tsh and some people never have a high tsh so people continue to be ill.

Sue

in reply toChippysue

Ahh I know so it seems Sue 😔 I have decided to take more responsibility over my health now on ☺️

humanbean profile image
humanbean

I did this. I wrote a letter addressed to the Practice Manager (whose name I didn't know) and delivered it by hand to the surgery. I wrote on the envelope "Delivered by hand" too, so they couldn't claim it had been lost in the post. The letter I wrote was as follows :

"Dear Sir/Madam,

I wish to make an application for copies of my medical records under the Data Protection Act 1988. I would like to see all of my records in all formats, and also wish to be supplied with photocopies of everything. Please could you let me know what the fee will be and send me your application form.

I look forward to hearing from you.

Yours faithfully"

I can't remember if they ever sent me a form or not. I was phoned and asked if there was something specific I wanted to see because there was a lot of photocopying involved, but I said no, I wanted everything, not just a part of my records. I haven't regretted it. It cost me £50.

Before the records were handed over I had to sign a form saying that I understood that some records may have been removed if my doctor had considered the information could harm me or a third party. Obviously, I have no idea how much was taken out of my notes. There are a surprising number of gaps, and very little survives from my records from before the late 90s.

in reply tohumanbean

Hey humanbean, thanks for your reply!

Think I'll use your template. To be fair the doctor surgery I'm at now have been much better than my previous surgery. I'm concerned about the thins with my previous doctors.

Oh my gosh! Can they actually do that? I thought data protection meant you were entitled to absolutely everything?

That says to me that they are hiding something for sure!! what kind of information could harm you or someone else??

humanbean profile image
humanbean in reply to

Yes, sadly, they can remove anything they like before handing the information over.

Clutter profile image
Clutter in reply to

Ying-Yang, I think it's probably to protect patients who may have fragile mental health from medical history that may be triggering but its written so loosely it could apply to almost anything which would mean challenging it formally and perhaps getting a solicitor involved to get them released.

I asked for all my manual and electronic summary records and they included test results, consultants letters but no copies of scans, ECGs or X-rays. Incomplete hand written records from my previous GP practice were included but nothing before 18 years of age. I thought it £50 well spent. I'd like my hospital records too but that's another £50.00 :(

humanbean profile image
humanbean in reply toClutter

Clutter, I have the same problem. I have had surgery in four different counties of the UK going back to the 1960s, and also in a couple of private hospitals. I hesitate to pay £50 for each of the sets of data because, for a start, money doesn't grow on trees. But I think what I fear most is that the records will have been largely destroyed, and all that will be left is perhaps a couple of pages. And I'll get charged £50 for that couple of pages...

in reply tohumanbean

Yes that's a good point! I guess it's only worth it if you find out the info you need to help yourself with your health. Hopefully you have ☺️

Clutter profile image
Clutter in reply tohumanbean

HB, it's really only the thyroid and other tests I've had done since 2011 I want. The records dept say you have to provide a birth cert, which I haven't gotten around too and is another £9 :x Yah think I could give 'em a drop of blood and they could verify I am who I say I am from that!

in reply toClutter

Oh well yes, that's a very valid point, hadn't looked at it like that. I guess I'm huts looking at it from the point of view of it not being a full picture!

All I'm interested in really is when exactly I complained about symptoms (as mine have changed over the years) and results from tests scans etc

Maybe I will just speak to my doctor when I'm next there

in reply to

Your GP's priority is to protect his job and cover his back. The patient is NOT a priority.

I would never do this as I think it better to deal with the present.

Are you strong enough to handle all the past misinterpretations of your symptoms. There maybe stuff you really wished you hadn't seen such as references to hypochondriassm, confusion, patients behavior erratic or non consistency in symptoms.

You know it has all happened the way you have told him but GP's don't always believe us. I actually quite like my present GP who tries to be supportive in a very conservative way and have grown to realise the right way of approaching him.

Years ago I was curious but now I feel very broken & let down by the National Health Service which is failing us all in every shape and form.

Chasing old mistakes and holding bitterness could prove detrimental to your health now and your GP won't thank you for bringing up previous misdemeanors.

Of course previous medical history is important but only if Doctors are going to join the puzzle pieces and consider the whole picture. I think this is where we quite wrongly have to take more responsibility for our own health and try to do a bit of puzzle piecing ourselves.

If you want your medical history for puzzle piecing, then fair enough. However, if you want it to rant and rave about mistakes, don't go there.

Young-yang3, My advice is to focus on present day symptoms and use time, energy and expense in getting yourself better.

in reply to

Yes I totally agree. Minor fussed about reading where the doctor has missed something or when they haven't brlieved me...I'm still in a state where the doctors have said they don't know what's causing my symptoms ( I'm now staring to think there's something underlying) so I'm thinking if I can look back after the past I can do exactly as you have said...puzzle piece...I am thinking if I can build a time line or when u presented symptoms, which symtoms (as these have changed over the years) then perhaps I can try and work something out. Not also to mention that with my terrible memory problems when I sit in front of the doctors I can't remember what where and when.

The doctor I have now has been much better at lair ending to what I've asked and not just making assumptions...this is how ive got as far as I have.

I do want to keep this great relationship I have with my current Doctor

in reply to

If economically viable I would strongly suggest help from a private sympathetic endocrinologist. I have just done this & wished I had years ago.

in reply to

I've just had a first visit with an endo (5 weeks ago) so think I will have to just see how it goes with him.

I'm waiting for him to contact me re other tests. So fingers crossed.

Thanks for you advice Flower007 ☺️

Clutter profile image
Clutter in reply to

Flower, I think the nasty, snidey remarks on patients notes ceased years ago when it was known the Data Protection Act would enable patient access to medical records. I have a bipolar diagnosis since my teens but that has never been exploited to suggest that symptoms I presented were psychosomatic (even when they were) or hypochondriac although I've been told "it's probably a virus" on several occasions.

in reply toClutter

Yes you are right. I'm just feeling fragile and know I myself couldn't face anymore negativity.

in reply to

Yes I can totally imagine no need to de kicked when you're already down. I'm just interested in the facts - wouldn't bother me if they took the opinions out of the files before they gave to me. Yes I think if there was a negative opinion it would be hard to take so a valid point for me to consider.

Thank you

in reply toClutter

Yes I think data protection changed things completely, I know that client notes in my work are to be only factual no options etc (prob a bit different for a doctor)

Oh my...yes the amount of time I've been told I must have a virus 😳....penny drops now 😔

Clutter profile image
Clutter in reply to

Ying-Yang, I've always assumed 'just a virus' means 'I dunno whats wrong with you, get more rest.'

in reply toClutter

I'm 'prone' to these 😔

jezebel69 profile image
jezebel69

Hi...I got my records last week because I wanted to do the same. There were many infuriating discrepancies...plenty of important omissions and worst of all only a few incomplete blood test results. It cost me £48 for the joy of this record and was little help to me. It did help me log the dates of past procedures but I can't even find the date I was diagnosed as hypo. If you decide to go ahead I would love to know if your experience was better.

in reply tojezebel69

Hmm seems there has been a varied degree of iutcome for people who have requested their files.

I'm thinking that I may perhaps speak with my doctor when I'm next there and explain exactly what I'm looking for and why. This may help me to get what I'm hoping to.

I'm really Hoping to keep the relationship I have with my current doctor as I find she listens which is great.

jezebel69 profile image
jezebel69 in reply to

That sounds like a good idea....I never seem to see the same GP twice 😐

Again I would be interested in your level of success

in reply tojezebel69

I shall definitely keep you updated ☺️

humanbean profile image
humanbean

Ying-Yang, one of the problems I have/had with my own medical records is that the Summary Care Record is the thing your doctor relies on to determine the "highlights" of your past medical history - and your SCR is only as good as the person who summarises your data. I can assure you that the people who have summarised mine have done an absolutely appalling job.

I have had doctors rolling their eyes at me because they don't believe I tell the truth about my past history (because it isn't noted on my SCR and that is all they have glanced over). But I now have a lot of evidence in the form of consultants' letters and letters about surgery to prove that I am telling the truth. So I think it is worth it to get copies of everything. The only problem is that, until you get the copies, you won't actually know what "everything" consists of.

in reply tohumanbean

Oh right, I've never heard of SCR before - that makes sense!

I never realised it was such a minefield 😳

Hillwoman profile image
Hillwoman

I don't know what is on my records from the past 8/9 years, because my local practice is making it very hard for me even to read them without levying a charge, let alone copying them. However, up to around 2006 I did manage to access my whole GP record, either at my current practice (the former practice manager was frightened of me!) or my previous practice, where I had a wonderful, enlightened GP, who allowed me to read my whole record from birth, even before it was a legal requirement to allow this. That GP offered to have them all copied for me, but I turned down the offer at the time, believing I'd be able to get access again whenever I needed to. Sadly, at my current practice, I've met with so much obstruction, that I'll probably never get access again without a threat of legal action.

But is it wise to see everything? Other members here have given interesting views on this. All I can say is that I found it profoundly upsetting, but also profoundly empowering. I understood what had been overlooked or misinterpreted, and the impact of outside influences on my medical care. It showed me how conservative doctors are and how likely they are to be swayed in their opinions and actions by complete irrelevancies, or by people who may have their own agenda, which has nothing to do with the patient's well-being. Sorry if that sounds cryptic, but there are personal details I can't get into here. I'll just say that access to my records empowered me to make some drastic changes to my life that I have never regretted. It showed me where to go next in my medical investigations and treatment and, possibly most important of all, which people in my life were and are truly on my side.

in reply toHillwoman

Wow yes! It sounds like..in balance the negative stuff and the positive stuff you learned were balanced!

I can definitely see both sides of the coin on this one!

It would take some strong cookie to negative Opinions and not take it to heart!

Hmmmm.....😏

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