Any Doctors or people good at reading blood test results?

[Wherecanigetsomeenergyfromplease]

Had blood tests, my follow up appointment isn’t until mid November, tried Googling, can anyone help at all? Testing due to constant kidney stones and tiredness

@IntoDeepBlueSea Did you have kidney stones? Are you better now? This is my issue, I’m sure I’ve been fobbed off in the past, I need someone really good, a brilliant Dr

It would be unusual to leave someone for years with untreated kidney stones - whoever made that diagnosis would normally have sorted the stones out (eg if you needed stenting/lasering) and thought about further investigations if they were needed depending on the features of the stones.

eGFR is one component of the kidney function tests - you need the rest of them and ideally the trends (which you should have if you've had kidney stones before).
Most of the rest of the parameters are just gobbledegook - they're not terms used in UK blood testing. CK wouldn't spring to mind as being particularly relevant.

You'd really be better off spending your money seeing a doctor who can take a less scatter gun approach and actually interpret the results.

I ended up have 3 parathyroid glands that had become hyperplasic. That means they were behaving like tumours. Usually a patient will have an adenoma (a non- cancerous tumour) on a gland, but for some reason mine went full force.

Anything that we describe as glands impacts on the production of hormones and chemicals. Your parathyroids monitor your calcium levels, and tell your brain.
When they go off accept, and tell your brain you've got no calcium, your brain demands calcium be released from your bones etc into your blood stream. So your mineral balance is completely out of whack.

Every cell in the body is impacted by minerals, so if one of them is out of range, you can get the weirdest list of seemingly unrelated issues. In the case of parathyroid it can include, but not limited to:

Extreme fatigue (hence the expression"bone tired")
Joint pain, but more tellingly,
BONE pain,
Thirsty,
Increased weight,
Sleep problems,
Sore/raw/tender throat or neck
Husky/ changes in voice
Pins and needles,

Numb in hand and/or feet
Eye problems
Depression
Anxiety
Significant memory problems
Visual hallucinations (before my surgery I kept seeing what I thought was a small black creature just in my peripheral vision/ dashing out of site, maybe a mouse, or kitten, even when I knew there wasn't anything it was very frightening).

There are others, but those were the ones I remember. They've all resolved.

My last post for now - if you can afford to go private, given that your gp hasn't done anything before despite your kidney stones, I'd get the private appointment.

The way I saw it, I couldn't afford to leave my job, which is very common, I know tons of people now who ended up bed bound before finding the answer. On average it takes a decade or so from first onset of symptoms to diagnosis.

What I don’t understand is that you went ahead and ordered these tests, as you were worried your kidneys weren’t functioning properly. If the tests had shown your kidneys were in failure (which they don’t) - what action would you have taken? Who would you have gone to see? Now ask yourself why you aren’t doing that now if your symptoms are such an issue.

@FFF3 If they showed I was in failure I’d have gone to emergency or asked my parents for a small loan to fund immediate private testing, it’s all about money, if I had that amount I wouldn’t be waiting around for normal appointments

@IntoDeepBlueSea I have most of those symptoms
Thank you so much for the info
To cut all the other stuff out and make sure they’re not overlooking things, what would I need to ask for blood test wise to find this out please?

Re. Kidney stones:
If you pass one, save it in a pot and ask them to get it analysed when you see doctor. Knowing what components the stone has informs what foods to avoid to lessen likelihood of more stones . Mine are oxylate and calcium, which means I need to avoid or only rarely have foods high in oxylate. Your stones may be different. Oddly if I do have an oxylate rich foodstuff, I need to drink a big glass of milk (calcium)with it that causes it to go through my body without going through my kidneys, so doesn't increase stone formation. Most importantly, stone makers should drink 3 litres of clear fluid every day. Kidney function test is urea and electrolytes. My qualifications: 46 years as medical secretary and patient of a top stones clinic in a London teaching hospital. I have had no stones since getting proper advice about avoiding them.

@mrsjoyfulprizeforraffiawork Thank you so much for the feedback. How often were you having stones? So since just making dietary changes you’ve not had any or did they give you other treatment? I’m getting pretty desperate now

Mine are strange as I have gone long periods without any. Had lots when pregnant with Dd, had to stay longer in hospital when she was born until signs of infection were clear. Then I breastfed for 3 years and didn’t have any, another year with not many and then the last just under a year, I’ve started to have them more frequently, I’ve put on a lot of weight and am just constantly tired, it isn’t normal

You really shouldn't have to ask for anything specific, they should know what you need!

Just tell them you've got tons of symptoms for parathyroid.. if you look at that website, there's a huge list, and there'll be something in there about the usual tests in sure.

@IntoDeepBlueSea I shouldn’t have to, but many things have been overlooked over the years 🤷🏻‍♀️
Ok thanks so much, I appreciate it 💜

You are probably tired from dealing with the pain of 'constant kidney stones'! They are one of the most painful things I've ever experienced.
Are you passing them unassisted?

@kittensinthekitchen Yes, perhaps it is, but something has to be causing them 😩
I pass them on my own, but some take longer than others. In the past, when I’ve had scans etc, there’s also been lots, but small ones at least

@Wherecanigetsomeenergyfromplease Yes, as stated I have been stone- free since following advice from stone experts. Before that I had a few removed in the months after an emergency admission to hospital for an (unrelated to stones) blocked kidney. The blocked kidney unfortunately did not recover, so I am routinely monitored now for stones forming since I cannot afford to risk blocking my remaining kidney. Drinking the 3 litres of water daily is key - I know that before all this I did not drink nearly enough (and it makes you feel better if you are well hydrated anyway).

@mrsjoyfulprizeforraffiawork Yes, I have to make a really conscious effort to make sure I drink enough. But even when I do these last few months, they’re still coming all the time, it feels relentless since June. What sort of foods do you avoid? How often did you get kidney stones?

Yes, this is why I asked earlier @Wherecanigetsomeenergyfromplease if the doctor who diagnosed you discussed with you the type of stones you have, dietary advice etc. Suitable diet and fluid intake can greatly help prevent the formation of some types of stones. The foods you should avoid or include in your diet will depend on the type of stones you have. Do you know what type you have?

@Lemon23 Years ago, I had lots of blood tests and he only found slightly low magnesium, so I’m on supplements for that. I did a 24 hr urine test which he said was fine. I remember being just sort of left at a loose end really, then I only got attacks twice a year or so, which awful as they were, I could put up with them. The recent times have been the worst ever and don’t seem to be stopping

Are you having the stones diagnosed and confirmed every time, or just assuming that's what they are?

@kittensinthekitchen I’ve had them for almost 20 years, I know when I have stones sadly

I'm just wondering if there could be something else going on that is being dismissed as stones, or something alongside.

For example, doctors could not understand why the very small stones they were seeing on scans were causing me quite as much bother and pain as they were. I finally went into surgery to remove some and they also found a large stone in my bladder, that they thought was likely causing the issue. They hadn't scanned my bladder, as there were stones present in my kidneys, so it was assumed they were the problem.

@kittensinthekitchen So sorry, have yours gone now? Do you know what caused them?

Yes I really need scans and all sorts, so tired of waiting now, private is tempting but just so pricey, especially with Xmas coming up

It’s a beautiful day and another weekend just lay in bed, I’m missing out of life and missing work and losing money now

Op I hope you eventually get the clarity you need.

I just wanted to say I really hate the patronising posts asking people not to ask for help on here.
It's an adult site.

I'm sure op totally understands anyone can post anything. I know myself when I've asked for any legal or medical advice I've been given, armed with info to then take to a doctor etc.

@RoseandVioletCreams Thank you 🙏

Yes, I completely agree