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[Emzib0b]

I posted a couple of weeks ago as a blood test revealed I had elevated iron and percentage iron saturation. My GP ordered more tests to investigate this, including repeat iron tests and a test for hereditary haemachromatosis.

My iron results are back on Patient Access and they have dropped significantly:

Iron
19/7/23: 31 umol/L (normal range 10-30)
1/8/23: 13 umol/L

Percentage Iron Saturation
19/7/23: 61% (normal range 25-50%)
1/8/23: 28%

I’m wondering if there has been a mistake with one of the tests as I was under the impression that iron could only drop so quickly following a massive bleed! Apart from a tiny bit of spotting two weeks ago my last period was over six weeks ago.

Edit (12/8/23): I hope this isn’t a problem but I have changed the subject heading to be more specific. Sorry it’s a bit long winded.

[CLKD]

Why not make an appt with the Nurse Practitioner ?   It will depend on why your iron levels were raised: could be due to an infection for example.  Did the GP not discuss?

How do you feel overall?

[Emzib0b]

The only contact I’ve had from my GP was a few text messages two weeks ago 1) asking if I’d been taking any iron supplements, 2) to ask me to make an appointment for a blood test so they could investigate my high iron and 3) to let me know testosterone can raise iron levels (I’d phoned the surgery to ask if it was possible).

How I’m feeling could fit with both anaemia (my RBC count is always low) and high iron - fatigue, getting out of breath easily, lightheadedness…however that could all simply be down to me having CFS.

A telephone appointment to discuss the results would definitely be a good idea. I’m not happy for things to be left just because my recent results are now normal - something seems amiss given the huge drop.

[SarahT]

Hi Emz,

After seeing your post and something on a separate thread about results I have now decided I need to see my own latest blood test results from my g.p.
I had cortisol tests this morning and if this does not show anything awry I want to see my other recent tests. Sometimes it seems we need to use this forum to help us understand what is being found within our own bodies. think I have been too complacent in the past and not querying my own results.

Hope some things are improving for you. X

[Taz2]

Can you read your results online Sarah? I can read mine going back quite a few years. I find it really interesting to see how various levels change.

Taz x

[Emzib0b]

Hi Emz,

After seeing your post and something on a separate thread about results I have now decided I need to see my own latest blood test results from my g.p.
I had cortisol tests this morning and if this does not show anything awry I want to see my other recent tests. Sometimes it seems we need to use this forum to help us understand what is being found within our own bodies. think I have been too complacent in the past and not querying my own results.

Hope some things are improving for you. X

Hi Sarah,

If you’re registered with Patient Access or have the NHS app you can make a written request with your practice to have access to blood tests results and clinic letters.

“Most patients will automatically be given access to more information added to their GP record from November 2022 onwards. This includes letters, test results and appointment notes.

Some people may also have access to information added to their GP record before this date.

You can access your GP record and nominate someone you trust to access it too.

There are 3 main ways to get your GP record.

Using your NHS account
You can get your GP record by logging into your account using the NHS app or NHS website.
First, you need to register for online services and prove who you are. You can do this when you create an account.
You'll need to ask your GP surgery for online access to your full record, or you'll only see your medicines and allergies.”

https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-get-your-medical-records/

I’ve been relatively stable for the last month or so, middling along. I think my ovaries went to sleep for a while but it could also be the testosterone I started using five weeks ago. How are you doing? x

[SarahT]

Thank you both Taz and Emz
 Am definitely getting the access to patient info sorted, just to check my own levels. Am sure something is going on due to my joint pain and muscle fatigue,and just waves of exhaustion.

Emz that's so good you have a level of stability. I remember how badly you suffer with the horrendous fluctuations. As do me... I kind of dread tempting fate, but my main symptom of horrendous mood swings does seem to be levelling out. The severe pms\pmdd is still a problem and I can feel my anxiety building as my ' period' approaches. But I am on 125 patch now,so that should begin to show improvements there, also a low dose AD.

 And I know that despite the hell we can feel as we are in that mood, it does lift. If I get too scared of the moods get dark, I just make sure I tell someone. Fingers crossed each month may get better.

Just need to work on what's going on joint wise etc.hrt never improved that so I assume it is not hormone related.  Given up on low libido and brain fog.

 I still feel a fraction of the person I wasn't on good days I just have to accept it. I've been a lot worse and can see real improvements.

Long may your stability last Take care x

[Katejo]

Hi Emz,

After seeing your post and something on a separate thread about results I have now decided I need to see my own latest blood test results from my g.p.
I had cortisol tests this morning and if this does not show anything awry I want to see my other recent tests. Sometimes it seems we need to use this forum to help us understand what is being found within our own bodies. think I have been too complacent in the past and not querying my own results.

Hope some things are improving for you. X

Hi Sarah,

If you’re registered with Patient Access or have the NHS app you can make a written request with your practice to have access to blood tests results and clinic letters.

“Most patients will automatically be given access to more information added to their GP record from November 2022 onwards. This includes letters, test results and appointment notes.

Some people may also have access to information added to their GP record before this date.

You can access your GP record and nominate someone you trust to access it too.

There are 3 main ways to get your GP record.

Using your NHS account
You can get your GP record by logging into your account using the NHS app or NHS website.
First, you need to register for online services and prove who you are. You can do this when you create an account.
You'll need to ask your GP surgery for online access to your full record, or you'll only see your medicines and allergies.”

https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-get-your-medical-records/

I’ve been relatively stable for the last month or so, middling along. I think my ovaries went to sleep for a while but it could also be the testosterone I started using five weeks ago. How are you doing? x

It may depend on the practice. Mine doesn't put any test results on there. I can only use it to order repeat prescriptions.

[Taz2]

Oh that's a shame Katejo. Ours is like a two tier system so you register first for online prescription ordering etc then complete a further form for access to medical records including test results.

Taz

[SarahT]

I have just emailed my surgery for When the reopen next week to request I have full access myself.

They seem to be a good helpful surgery but I will push if needs be. It seems only right we should see our own records, unless of course they may be reasons they could cause harm to a patient.  ( am thinking severe mental health illness, but I am neither in the medically legal profession of course.

Katejo I would maybe contact your own surgery as maybe as Taz says there may be a further form to access all records.

[Emzib0b]

Sarah, I hope your request to get more detailed access to your records was successful.

I phoned the surgery a week ago to query the large drop in iron levels. The receptionist said she’d query it with the duty doctor and let me know. Nothing happened. I got in touch again today to chase it up. The receptionist just read out the correspondence between the surgery and myself from four weeks ago 🙄 I’ve been given a telephone appointment at the end of the month “to put my mind at rest”.

I was initially baffled/confused when the second lot of results came back. I have to be honest I’m starting to fret a little.

On a plus note, the receptionist informed me that the Haemochromatosis gene screen was negative.

[SarahT]

Hi Emz

It's bad enough we seem to have to play the role of Dr and detective ourselves to work out what is happening with our own bodies with your then having the frustration of requesting the surgery for your results to be explained and needing to chase it up all the time.
Some days it's just too much stress and anxiety to keep trudging away to no avail. I just hope whoever you finally get to speak with gives you the full answers you need. Least you have some time to prepare your qustions.

Let us know how it goes.

And yes, I asked my surgery that day for full blood tests results to be sent.Guess what!? Yep, am still waiting too. Honestly I have begun to accept that anything we attempt to get from anyone will end in failure and constant chase ups. Can do with our all this. I did go online to the nhs patients record access but kept mucking up the photo i.d bit. ( about 8 times!) Will have another go. Techy inept.😂

I had cortisol blood tests done which came back abnormal so waiting for an endocrinologist to get back. Suspect auto immune problems. Let's see what joy that brings too.
On the better side Emz the higher dose hrt and low AD have really helped my severe mood swings. Fingers crossed!

Take care xx

[Emzib0b]

Hi Sarah,

I’m so glad to hear the high dose HRT and AD’s have helped your mood swings! I’m sorry to hear of your suspected auto-immune issues. Fingers crossed you’ll get some answers soon.

Unfortunately I spoke too soon and my mood issues have been creeping back over the last few weeks ☹️ I’ve no idea what I need with my HRT. I don’t know if it’s low, high or fluctuating oestrogen that’s driving all this. I had a review with the practice nurse last week and she didn’t support cutting patches to try in between doses.

My telephone appointment was useful in that the GP agreed to repeat the iron tests to rule out a lab error. However she tried to explain the high iron levels away as being caused by my vegetarian diet!!!

Turns out the receptionist gave me the wrong info last time - the lab didn’t run the Haemochromatosis gene screen because my iron was normal (understandably!).

I asked about the original issue of low red blood cells (which seemed to have been forgotten about in light of the raised iron). Told again it’s normal when menstruating. I guess I’ll have to wait until I’m post meno to have a normal level of RBC’s!

[SarahT]

Good grief Emz

Isn't it hard enough coping with all this without the surgery faffing about with your contradicting results.  Made me laugh, first time I have ever heard that a vegetarian diet caused high iron levels!! Mine's always on the lowest of acceptable range.

I do honestly thing the peri fluctuations lead us into  a turmoil, so much so that a steady dose of oestrogen may be enough one month, then too high or too low the next.... If as we know too well fluctuates wildly almost day to day.

I do think I have suppressed my cycle as much as can be done on the 125 patches. So far so good, I think I am almost 3 months in on this dose. So my stability is lasting longer.  Next stop no doubt will be finally finishing periods and then coping with the lowering of natural oestrogen and so the party begins all over again😠

What are you plans regarding the moods? It's so bloody hard isn't it.
I wish you well Am a
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