Blood test results are all over the place ?

[jjourneys]

I’ve been anemic for a few years with unknown origin causing it.

This is still the case but now my platelets and RBC have gone really high? Plus have lost 10kg without trying or changing anything.

Have got a follow up GP appt but it’s weeks away, so I’m going to push for a quicker one I think …

Also, has anyone experienced this?

So GP has ordered a FIT test, referral for colonoscopy / gastroscopy and bloods to be rechecked again in 4 weeks.

It was funny as she just wanted me to do a FIT test and recheck bloods in 4 weeks and leave it at that, but I pointed out that I thought this wouldn’t change anything in my bloods as hadn’t done for 5 years, although she sent me back to reception to make those appointments.

Then came and found me at reception and called me back to her surgery where she said I was right, and she would refer me to now as I’m bleeding somewhere so have to find where it is, and no need to wait a further month.

Anyway, last checked in 2021 re this, so let’s see what happens this time.

I'm really glad she has got things moving for you. Good luck!

I really think you need to explore secondary hypothyroidism. With thyroid results like that your GP should be referring you anyway per the guidelines.

Thanks ND … yes I agree but literally until I argued about it, and she subsequently called me back in, all she wanted to do was do a FIT test and recheck my bloods in a month! I said, ‘but what is going to change anything from that?’ Lol

I had a notebook with me showing my levels for the last 5/6 years, and what investigations have been done when etc (ie last FIT test 12 months ago, negative - last colonoscopy/gastroscopy/CT/gynae US 2021), so I was clear with her what has been ruled out and when.

I highlighted consistently low TSH and T4 (also given my brother is a Thyroid Cancer survivor), but she didn’t seem bothered!

Ah well will keep thread running, as it’s good for me to make sure I keep on top of it, and update for those who have been kind enough to comment etc.

Have you had a coeliac screen?

Coeliac screen has been done twice, and negative.

I'm so sorry you were dismissed by Dr about the thyroid links and bloods. I have found similar and know how hard it can be to get anyone to seem to take it seriously - I had over a year wait for a consultant endo when my thyroid went haywire but was lucky my GP was able to prescribe carbimazole (which he was super reluctant to do but I couldn't get out of bed and was loosing so much weight I actually thought I would die at home). The trouble is it skews your mind as well (hormones so obvious really) which can make it so much harder to advocate for yourself. By the time I saw him my bloods had stabilised, and were working back from hypothyroid down - now a year on they are almost hyper again but as you say, no one cares despite bloods showing them dropping every few months until it becomes seriously urgent to medicate. Other than trying to go private (in my town they have the same private and public endo and he covers a huge area alone apparently so wouldn't have sped it up) I don't have any other suggestions but am watching with interest in case someone else has any solution.

Thank you Firstcuppa :) keep strong and keep on at them I think is the key. My bro had to have multiple GP appointments when he had thyroid cancer back and forth with a badly swollen neck (!) until they suddenly realised what was going on and then all hell broke loose and he was being operated on and starting radio-iodine therapy within a week/fortnight as they realised they’d missed it for so long!

Tbh I feel I’m a bit guilty of letting the anaemia run a bit too long (even though I pointed out to doc I’d taken myself to hospital on 4/5 occasions for ferinject infusions), but given the now raised RBC and platelets and weight loss, plus no periods in last year to contribute to iron deficiency, then there has to be another reason!

Much love x and hope you all have a good weekend.

Typically today, after telling my GP I’ve only had about two periods in the last year so think I’ve hit menopause, I’ve now come on a period but black coloured menses (which I know it’s necessarily something to worry about). But still, annoyingly timed and I feel like crap! I’m due my 3 yearly cervical smear test, so have got that booked for 9th Feb, so if there is anything going on there it will get picked up then anyway. Not expecting it though. Just going through the motions, to rule stuff out.

Im not working currently and the other half started a really good new job last week, so I used this last week to nap when I could and I think it helped, but that’s really not like me to sleep in the day.

Anyway, just sharing x

OP Really high platelets sounds worrying, I’m surprised your GP hasn’t arranged other tests.

Tbh I’m just waiting on what she has referred to the hospital from my GP appointment 2/3 days ago … ? I did verbally point it out … twice … so I feel currently I can’t do much more? My bloods are being rechecked on 18th Feb, so if my platelets and RBC is high still or, dare I say it, higher at that point I will make another call.

Just an update for me really … I have had about 48 hours of neck / throat pain, and today discovered lump in my right groin (presumably enlarged lymph node), so contacted the docs and they called me back this afternoon. I now have another GP appointment with the same GP as last Wednesday, this Friday at 11, as they want to check the groin lump. But turns out she didn’t do any referrals last week like she said she was going to do, as the admin person said there was nothing on the system regarding that! So let’s see 🫤.

What s worry for you. I hope you can get some reassurance at the appointment and the referrals sorted.

FIT test has come back negative today (which I thought it probably would be), and my GP has sent off the ‘2WW urgent cancer referral’ form to the hospital, and I’ve had an update on the NHS app regarding it, and that I’ll get updates re appointments through that.

It says their next ‘target’ date is 18th February re getting back to me with next steps (presumably colonoscopy - I last had one in 2021). I also have an appointment for them to take my blood again on 18th February, so will be interesting to see what’s happened with levels since the last lot.

Just updating for me really, and for anyone who’s gone or going through similar.

I imagine it's a very worrying time. But I'm really glad they're taking things seriously and you're now in the system. I hope your appointment comes through soon.

Thanks Tiptop … I got a call from my local hospital this afternoon from a lovely lady. She explained that over the next 2/3 weeks I’d be getting a full ‘MOT’ and she was calling to check they had my details correctly and asking me some additional questions. It turned out she knows my brother from when he had cancer 25 years ago, and we had a chat about that, so that was positive (she had asked re familial cancer history and my brother had thyroid cancer when he was 23).

I explained history and she was concerned they didn’t have a certain kidney blood test result they usually need at this stage so she said they might call for me to go to the hospital at short notice if they want me to do another blood test to get that parameter prior to scheduling my MOT tests. She said it would include, colonoscopy, gastroscopy, CT scans and ultrasounds over the next two weeks.

Anyway, she was nice, positive and said it was about ‘leaving no stone unturned’ in getting to the bottom of things.

So … let’s see …

That's so reassuring. I'm so glad they're going to get to the bottom of it. I have everything crossed for you.

Thanks Tiptop … let’s see how next week pans out …

CT scan is done (by a rather tasty young male medic), and a week today I will have had the ‘endos’ all done, so let’s see if any conclusions …

Was it a regular CT scan or did you have the injection that makes you feel like you have wee’d yourself?

Yes they took one picture without the injectable die, then injected it (so you feel the warm sensation!), and then took another scan.

Im having sedation for the combined colonoscopy / gastroscopy next Wednesday (I’ve had these several years ago, but not on the same day before), but apparently it’s more the done thing to do a combined one now.

Im still feeling like 50/50 whether they will get a diagnosis on the bloods from these, but let’s see?

I had that and was convinced I really had wet myself!

I’m very glad I was warned beforehand to expect it as it really did feel like I had done a wee. Very strange feeling.

Hopefully these tests will find out what is wrong.

Had a rough time at dual endoscopy session this morning and have just slept 2-3 hours back home recovering.

The Gastroscopy went fine, but they couldn’t complete the colonoscopy because my colon ‘was too loopy / restricted’ so they couldn’t get the camera past the first section as I was in too much pain from them trying. They kept upping my IV pain relief and meds to try again etc and giving me gas and air too, and they had to leave it and said they will have me in for a CT scan of the colon in the next week.

So that has worried me now, as when I had that done 5 years ago there was no issues with it!

I haven’t Doctor Googled yet …

Can’t help thinking this ‘can’t get endoscope around my colon’ issue is also related to my loud stomach noises etc