PATIENT ACCESS INFO DIFFERENT: I've just been... - Thyroid UK

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PATIENT ACCESS INFO DIFFERENT

Wetsuiter profile image
Wetsuiter
β€’26 Replies

I've just been trying to make my profile on here a bit clearer, and was checking a few details on Patient Access, only to find that ALL my thyroid blood tests have been removed (thats 2 per year for 8 years, I think).

Now then, what do we think of that?

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Wetsuiter profile image
Wetsuiter
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birkie profile image
birkie

Hi wetsuiter

That is interesting do you know how long records are kept? Just a foot note my father died of lung and throat cancer his gp kept telling him it was laryngitis until my father had enough he couldn't do his job because he lost his voice. He eventually got an appointment for the camera down his throat then he had a biopsy which showed a malignant tumor he died 4 years later. Of course we were greaving,, then about a year later I requested to see his medical records ect but was told they'd been destroyed I was under the impression they kept them for 10 years after death I got nowhere.. I'm currently in the process of attaining my blood results from Nov 2017 to sep 2018 I had been very ill for 3 years but gp insisted it was the menupause I fought for bloods to be done as I told him several times it was my thiyroid going overactive he did about 3 bloods from the Nov 2017 till Aug 2018 each time they were with in range but I felt awful.. He was very rude and on the last bloods in Aug 2018 he told me to stop bothering him he as other patients!! Then in sep 2018 I was so ill I made an emergency app with another gp she immediately diagnosed me as hyperthiyroid took bloods they came back the next day my TSH was not detectable my T3 was 24.2 but other gp in Aug said I was in range I'm curious to see what those results were as I've never saw them.. Just wondering what will happen when I do request them now you've posted this... πŸ€”πŸ€”πŸ€”πŸ€”

ThyroidThora profile image
ThyroidThoraβ€’ in reply tobirkie

Good grief, you've had a rough ride!

I thought that medical records for patients would be kept indefinitely. Once dead I would expect them to be kept by the General Medical Council or some other authority because there would be valuable research information contained within them that could prove useful.

Are you on the road to recovery now that your hyperthyroidism has been diagnosed?

TT.

birkie profile image
birkieβ€’ in reply toThyroidThora

Hi ThyroidThora

I'm having all sorts of trouble with the levo it's flaring up my colitis I have bad bowle pain and loose bowles same with the carbimazol and ptu I couldn't stomach them vomited them back so they weren't working but gp insist I kept on them.. Upshot I was rushed to hospital in thiyroid storm.. You would think my gp wouldn't make the same mistake twice but he is insisting on me keeping on the levo.. Think I've tried 3 lots now on fourth that's Eltroxin gp said it would be better on my stomach but theirs no change.. My last bloods were awful.. TSH. Was 3.53..T3 was 2.3 T4 was10. 9 very bad no wonder I feel awful but gp is not bothered he has extended my bloods by 3 weeks so just have to put up with awful symptoms 😭😭😭 are gp nuts today bet he wouldn't put up with it.. Hopefully I will see another doctor in the surgery I really don't want him anymore.. 😩😩😩😩

ThyroidThora profile image
ThyroidThoraβ€’ in reply tobirkie

Oh dear, I'm really sorry you're going through this. GP's and most of the medical profession just don't know about thyroid conditions. They assume you just need a little pill and then you're better, this does not work for many people. Looking at your blood results it looks like you now have hypothyroidism not hyperthyroidism. Your TSH is near the top of the range but your T3 is too low and your T4 is low too. You probably need an increase in your Levothyroxine or a trial on Liiothyronine but this has been red listed by most CCG's because of the cost. If you are going to see a different GP at your surgery I suggest you go armed with some ammo. Keep a diary of your symptoms and fully explain everything to the GP. Don't say you feel awful because they'll brush this off and try to tell you it's in your head and you need antidepressants.

Also, ask for full blood profiles to be undertaken because you might have a Vitamin D and/or Vitamin 12 deficiency which is contributing to your illness.

I hope this helps and take care.

TT x.

birkie profile image
birkieβ€’ in reply toThyroidThora

Hi TT and thanks for your reply ❀️

I've just posted on here about an e- mail I've sent to my endos secretary about my awful symptoms on levo it's never subsided much since being on it.. I feel no better my life is none exsistance its just as bad as it was when I had my thiyroid 😩 I'm bedridden have bad bowle/ stomach pain headaches still have tremors sweating. If I'm up and about my heart beats very fast I feel faint.. I can tell you I will never accept antidepressants and I've told my gp this I'm not depressed I'm just bloody sick of not feeling at least a bit better.. What's the difference between levoroxine and liiothyronine? I think my main problem is that you have to take levo on an empty stomach and can't eat or drink for an hour after.. I'm on Eltroxin now because gp said it would be better on my stomach but theirs no change I'm the same.. Endo says my levels are nearly their so I should be OK by now... Showed him the levels you were talking about in your post to me.. I don't think those levels are anway nearly in range.. 😒😒😒

ThyroidThora profile image
ThyroidThoraβ€’ in reply tobirkie

Hiya,

The difference between Levothyroxine (T4) and Liiothyronine (T3) is that Levothyroxine is converted to Liiothyroxine in the body, Liiothyronine is the active thyroid hormone that you need to survive. It's used by all the cells in the body and is also converted to T2 and T1. T2 helps your metabolism, the same as T3, and T1 is used by the brain and helps with mood. I suggest you read Dr Durrant-Peatfield's book Your Thyroid and how to keep it healthy. It is very informative and easy to read with support for diet and supplements.

Please PM me and I'll do all I can to help.

TT x.

SeasideSusie profile image
SeasideSusieRemembering

Have you asked your surgery?

I live in Wales and we don't have anything online at my surgery except the ability to order repeat prescriptions.

Lora7again profile image
Lora7again

That is strange because I can look back over 10 years with my online records. I would query that because you should be able to see them. Medical records are kept until death and then they are archived and I know this because I worked in the department part time after I had my children.

bma.org.uk/advice/employmen...

Wetsuiter profile image
Wetsuiter

I've been able to see them in the past, and other records are still there.

Achilles_Pain profile image
Achilles_Pain

I could see all mine through Patient Access, then the Practise merged with another and now I can see nothing. I had to start using myGP app on the phone which isn't set up for displaying results and when I tried going back onto Patient Access I've been removed because of the merger. It may be something as innocuous as that, but when I'm there for a blood test on Tuesday I'll be asking to be put back on. Last time I looked (July last year?) I could see my results all the way back to 2005.

They've tried to set up myGP so I could see my results when I've asked but they say they don't know how to.

Lora7again profile image
Lora7againβ€’ in reply toAchilles_Pain

Your records will be somewhere so ring them and ask. I remember searching for some records for days and eventually they turned up in some Consultants car boot he had forgot he had them. I could tell you other horror stories regarding medical records but I won't.

Lora7again profile image
Lora7again

Show them this online

patientaccess.com/

Wetsuiter profile image
Wetsuiterβ€’ in reply toLora7again

that just takes me to login page?

Lora7again profile image
Lora7againβ€’ in reply toWetsuiter

scroll down and you can click on other stuff like how to register etc

Wetsuiter profile image
Wetsuiterβ€’ in reply toLora7again

what am i looking for? πŸ™„

Lora7again profile image
Lora7againβ€’ in reply toWetsuiter

at the top it says register so I would register if I was you ... click on it

Wetsuiter profile image
Wetsuiterβ€’ in reply toLora7again

I am registered. I can see stuff going right back to when i was a premature baby. My thyroid blood tests were also all on last time i was on there, but now they ve gone

Lora7again profile image
Lora7againβ€’ in reply toWetsuiter

I was messaging Archilles not you .... I would ring them and ask about it if I was you because your records will be somewhere they do not destroy them until 10 years after you have died or even later. I used to archive the deceased files when I worked in medical records.

Wetsuiter profile image
Wetsuiterβ€’ in reply toLora7again

aaaahhhh

Lora7again profile image
Lora7againβ€’ in reply toWetsuiter

Your records will be somewhere just keep asking

Lora7again profile image
Lora7again

Have you tried ringing them?

support.patientaccess.com/s...

Lora7again profile image
Lora7again

My first message was meant for Archilles btw so we got our wires crossed a bit lol

Lora7again profile image
Lora7again

I feel like getting a job back at medical records again and deleting "delusional" which was written on my records when I was suffering with undiagnosed Graves' disease!! Doctors can write what they like about you even if it is incorrect.

Lora7again profile image
Lora7again

I was just thinking how boring it was working in medical records pulling them for clinics etc. I loved doing the microfilming but I don't think they do that now because technology has moved on.

Look at this for a storage facility and I though the one I worked in was big!

cleardatagroup.co.uk/sector...

Wetsuiter profile image
Wetsuiter

Follow up to the fact that my Thyroid Blood Tests results 'disappeared'. They're, once again, visible, but the reference interval has changed. Not by much, but it's enough, when they're micromanaging dose by TSH. It was (0.27-4.2) but someone's gone in and changed historical records to (0.3 -4.50).

I'm not going to ask them about it, as they can't even reply, when I ask for a consultation about debilitating symptoms.

But I am curious...

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