NHS App

[Musicfrequency]

I only registered with my GP surgery a couple of years ago after moving home and not having a positive experience with the nearest GP surgery I registered with. I had little contact until December 2023 following my trip to A&E in December for a UTI and subsequently had raised blood pressure. I have been pre diabetic for the last four years and now I am about to start attending a Diabetes Prevention programme and have also enrolled with a weight loss programme.

I registered for the NHS app and normally look at it about once a week, more often if I'm waiting for test results. Interestingly someone has recently added information on there and whilst I had very little information on there at first, I then saw pages of test results going back to 2003. I was put on 50mg of Levothyroxine in 2009 which was increased to 100mg. I no longer take this due to side effects and take Metavive 1 x 4 capsules a day.

I was working full time during that period in a very demanding role as well as studying at uni part time. I never saw these results and was not so informed back then yet seemed to always be told I was anaemic and given iron tablets but looking at these documents my TSH was an issue as far back as 2003 when it was 5.47 and at one point was 11.33 in 2009 and the lowest I could see in 2009 was 3.81.

Apart from doctor comments 'patient says she is tired all the time' and 'raised TSH to be monitored' I don't ever remember being told I needed to have further investigations just the usual blood tests. Hindsight is a wonderful thing and knowing what I know now I would have pursued it more but having only acquired the app recently I had not seen my medical notes before. It is our legal right though and now I always ask for a print out of my blood test results.

It really is so important for us to educate ourselves and take ownership of our health because most doctors aren't going to understand anything where the thyroid is concerned and those of you here know only too well about the times you have been fobbed off myself included.

Let's hope this Thyroid petition gets taken seriously and considering 1 in 20 of us have a problem it should be.

Wishing everyone here better health now and for the future. 🙂

[Fweb]

Like you I've also found being able to look back at test results through NHS App very eye opening! It's obviously good to be able to refer to it now, but trying really hard not to be annoyed about it - I only got a diagnosis in Nov last year having had symptoms and obviously been hypothyroid for my entire adult life.

Digits crossed for the petition and wishing you all the best too

[Musicfrequency in reply to Fweb]

Yes I agree, it was annoying looking back and seeing the obvious but the doctors didn't. We didn't have an app back then either so now we can see things for what they are. Still we can't go back only forward. Always a lesson to be learned eh? Take care.😀

[Jefner]

NHS App? I would very much like details on this please

[Musicfrequency in reply to Jefner]

So I am assuming you want to be able to access this yes? You can look for the NHS logo and download it on your phone from the App Store. You’ll need to provide your DOB and NHS number from what I recall and create a password and you get sent a security code each time you login.

[Jefner in reply to Musicfrequency]

thank you, what does it actually gain access to

[Musicfrequency in reply to Jefner]

So here’s what I copied from the app.

Request repeat prescriptions

Check if you need urgent medical help using 111 online

GP health record *

View and manage prescriptions

Upcoming and past appointments

View your messages

So under this heading * you have the following sections with a number beside them. If you look at this page you’ll see instantly if the number has changed then you have a new entry:

Allergies and adverse reactions

Medicines

Immunisations

Health conditions

Test results

Consultations and events

Documents

Hope that helps you and anyone else who hasn’t already got the NHS app.

[birkie]

Hi Musicfrequency❤️

The same happened to me I was referred to an endo in 2014 but was not told why by my gp, I had been having symptoms of sweating, palpitations, and shaking although they were not to bad at that time.

After the initial appointment I received no feedback on it so I rang the surgery, the receptionist told me there was no futher action required as everything was normal (notes on computer by GP) I returned some months later with these same symptoms but the gp told me they were menupausal he did this for the next years with me attending my surgery more frequently now as my symptoms were effecting my life really badly.

I'd recently put my symptoms into the NHS app and it kept saying an overactive thyroid, I mentioned this to my gp back in 2016 and he got pretty angry and told me "it's your menupausal state nothing to do with your thyroid"

Fast-forward to 2018 and now I've lost a lot of weight are having tremors, very fast heartbeat sweating profusely, I can't even walk because I look like and feel like I have Parkinsons, again I see this gp who again says its menupausal then congratulates me on my weight loss (now under weight).

I go back home and around 4wks later I collapse again at home, my son gets me to the surgery on an emergency appointment and I see a new GP, just started a week ago, she as no problem diagnosing me on the spot.. "you clearly have an overactive thyroid"

Now this is why I told you my story because my son was so angry he requested my medical records and in there we found that report from the endocrinologist in 2014 it read:

This lady as 2 suppressed TSH with episodes of thyroditis her TSH is suppressed.

Diagnosis subclinical hyperthyroidism , can you please give this lady regular TSH, T3 T4 thyroid blood tests to keep checking her levels please, obviously my gp did take blood so I think that's why I was sent to this endocrinologist .

My gp never did this, after the initial endocrinologist appointment, we couldn't find one thyroid blood done after that letter, I unfortunately went into thyroid storm in 2019 in hospital for 15 days 😡 my whole thyroid was removed in may 2019.

very early on i never bothered looking at test results or got printouts because i very foolishly believe everything I was told, I'd never fall for that again, I now get ever printout after anything, I ask for copy letters of appointments, procedures ect, I would never again trust a gp, endocrinologist or any medical professionals.

All that information on that endocrinologist appointment should have been investigated by my gp, looking back I often wonder if he was just plain lazy or incompetent.

[Musicfrequency in reply to birkie]

Hi Birkie

Don’t beat yourself up. I’m sure hand on heart many of us at some point took our eyes off the ball. In my case I was working full time in a demanding role and had lots going on in my life besides that. So yes things were overlooked for me too and I also now question everything.

I live in my body, no one else and we need to be aware of what our gut will tell us and take necessary action. I also get printouts and if I see anything on my app that is untoward and suddenly ‘disappears’ I will make sure I have taken a screenshot.

Hope you’re well. 🙏

[serenfach]

I was using a NHS site to reorder prescriptions, but last time it warned it was closing and a link to the new NHS app. I dont have a mobile signal, so dont use apps as of course they wont work, so I went to the bit to sign on using a laptop. After adding all my info, it came to the post code, and instantly chucked me out as I in Wales. There was no link to the App for Wales. I have raised this with the App people, asking them to put the post code as the first question, and add a link for those of us in Wales.

I had a response that looked like it was AI generated that if I was having problems accessing the link, to access the link for further info... You could not make it up.

I finally found the one for us in Wales, and answered the questions to arrive at the need to send them a passport type photo. I dont have a current passport, so ticked that box and was told to contact the surgery to get a linkage key, an ODS code and an account ID. The surgery had no idea what I was talking about. The lovely lady at the practice replicated what I had done and found the same. They had not been told anything...

They told me to phone in for repeat prescriptions. Isnt progress wonderful!

[Musicfrequency in reply to serenfach]

I wonder sometimes if some things aren't by design just to frustrate us. Good for you for persevering though even if it wasn't the outcome you wanted.