As my GP has me down as a hypochondriac malingerer I need some evidence to force testing of calcium properly. I can’t afford a £150 6 hour round trip London clinic test so some internet research led me to a £25 set of 10 dipsticks. I’m ready for the ‘waste of time’ responses and see an endo responses. We don’t have any nearby and GP is doing her best for me. ENT think watch and wait. So I’m arming myself with the best I can do to prove it’s worth a second opinion.
I’ve read that you don’t use the first wee on day one, but you do collect all other day 1 wee and the morning of day 2 and refrigerate and test the mix of wee on day 2.
Hubby is going to be thrilled 🫣
Says about eating certain diet but not specific as to what. Any ideas?
the pin point accuracy of the results aren’t too important to me I just want to see if I’m obviously above or below normal to help with forcing some action regarding parathyroid adenoma. If it’s normal then I have to accept that with PTH normal then watch and wait is correct.
all suggestions gratefully received 🌱
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Oh, I'm interested in this as I wasn't able to get a straight answer about testing calcium levels, it's hard to believe bloods as your body leeches it out of your bones to keep the levels up?
Only calcium tests I found had to be done in clinic in London. This Medichecks one looks cheaper than those. But, as I need to do the MMH £65 thyroid and vits panel in a couple of weeks I can’t stretch to this as well.
Vit D3 K2 4000iu daily D was coming up very slowly, last test I also take magnesium daily.
Medichecks Sept 2022 79
Medichecks June 2022 was 47
I’m just trying to prove to myself there really is nothing to worry about despite adenoma and normal PTH. If I get an out of range result I have a reasonable chance of GP supporting further investigation.
Why does the NHS say that levels >50nmol/L are 'abnormal'? Mine are currently 168nmol/L and I've read that 250nmol/L is the upper limit for 'normal' Does anyone really know what's 'normal'? I suspect not.
I would suggest you speak to your GP again about your worries regarding hyperparathyroidism. I did have the urine test initially but it didn't show up much and I was more or less ignored for nearly five years, having calcium, pth and vitamin D every three months (these must always be done together from the same blood draw). Every time GP would write "above the normal range, to be expected"!! The endocrine department at our so called famous teaching hospital in Cambridge was awful. In the end I had to do an interest free credit card payment to partly pay in excess of £11k for a private operation in London, three days before lockdown. The surgeon removed three pth glands and wrote a diplomatic bo**ocking to the endocrinologist and I was advised to report them and the GP who unfortunately retired, to PALS, which I did. Not that that would help my ever worsening osteoporosis. However, I felt duty bound to complain for the sake of any other victims of this woman. Do not accept this hypochondriac rubbish, I was also told I had "mild hyperparathyrodisim", no such thing like being mildly pregnant. I felt like hell with anxiety and all the vile symptoms that go with the disease.
I recall reading an Addenbrooke's endocrinologist saying how they were to encourage rationing of vitamin D and PTH testing, no doubt for sensible reasons, but one wonders whether GPs implement the directives with excessive zeal. They certainly appear clueless about calcium issues.
my GP won’t organise anything, she told me I had to trust her, you see I’m normal, my results are all normal, she’s worked in 11 hospitals and A&E in big cities and never had to organise a calcium test with PTH 🤯my concerns are not rational and I read too much online and ‘not fro this country’. I need to stop worrying. She is however open to being presented with evidence and readily accepts my private test results. She after all was the only GP in 48 years to spot thyroid symptoms.
My reason for urine testing myself is to prove to myself I’m either a raging hypochondriac or all the advice about getting second opinions and don’t let this lie advice about my MRI results were founded.
As your PTH is well within range and your scan hasn’t shown anything why do you think there is a parathyroid problem ? 24hr urine testing isn’t usually done as a first line test, it’s done as a confirmation when all the other results are abnormal. Your VitD is also not indicative of a parathyroid problem, my VitD was below 12 when I had hpth.
I had an ultrasound followed by MRI with gadolinum contrast as CT with iodine was contraindicated by poorly controlled thyroiditis at the time. Radiologist was cautious. Scanner was back of a lorry in the hospital car park.
Now we know thyroid is small/atrophied I guess CT could go ahead.
Had to Google Sestamibi, i don’t think we have that near here. Looks like a few London hospitals have it. Nuclear medicine clearly not on the menu in the Welsh borders countryside.
ah interesting that’s not too far. I’ll ask the doctor if calcium turns out to be out of range. Thanks for sharing your knowledge it’s much appreciated 😊
If you have an adenoma, it certainly does change everything and should be removed. I had numerous scans, two sestimibi, 2 ct scans, 3 ultrasounds, all negative apart from something perhaps showing on the ultrasound. However, a decent surgeon will go by bloods rather than scans which are invariably negative. My calcium was almost top of the range or slightly over and PTH was always over. I was getting quite desperate as I felt so ill and I already have severe osteoporosis. I then spoke to a wonderful man in California, possibly the best endocrine surgeon in the World and he said, please don't let it go on, it is ruining what is left of the rest of your life. Find the money and he only could recommend Professor Palazzo as he had sat in on one of his operations when in London. That was in the January 2020, saw Professor P in February, he said okay and had the operations in the March.
Was great for two months until i tripped in the garden and lost a piece of finger in the door which couldnt be re attached but plodded on and very very foolishly I opted for the Pfizer when i have Hashimotos which has since been advised against. I now have peripheral neuropathy so some days cant walk very well and a screwed up immune system, so a very bitter and unhappy bunny. Had the EMG and MRI and even consultant confirmed most likely vax but of course then he was too nervous to put it in writing but everything is coming out now thankfully. Not that that will help a lot of us.
I too am interested in this as like Eeyore I couldn't get a straight answer from ROS as to whether my calcium blood results were deemed to be good enough or not. GP just said that they were fine as they were in range (as is always the way) but I really have no idea😱
With you having the scan done by an ENT clinic would they not be able to request calcium profile, PTH and vitamin D blood tests for you?
The ENT clinic that I am under has been really helpful in this regard as my PTH was out of range prior to my thyroid op and is still out of range so I'm getting blood tests done again. It may be worth contacting them?
I realise the person doing your scan didn't sound particularly helpful but it still might be worth a go?
nope after comical appointment with ENT worthy of a Harry Enfield skit where everything was normal, nothing to worry about, (which is not what the US or MRI reports say, the reports say FNA and CT for more info). Link to that debacle here healthunlocked.com/thyroidu...
His words were PTH in range so no need for further testing for now. I asked directly about Calcium testing in the appointment 3 times. Each time the question was deflected. He didn’t refuse but he changed the subject. Told me it was normal, I had to point out it’s never been tested. 🤯🫣
I took hubby with me and he said he wouldn’t have believed me if he hadn’t been there.
Glad your ENT were helpful, mine are patronising and un reassuring. I looked them up, they are all ear experts. The one I saw before the MRI report came back only wanted me to take gaviscon, although he did give me a smidge of evidence to ask for 25mcg T4 raise to trial as this may help stomach / silent reflux symptoms.
This is why I’m either trying to reassure myself or gain evidence for my GP about calcium levels to have something to go on for a second opinion as ENT are apparently the experts.
Thankfully at least your other half was there to witness what was discussed.
Yes my ENT clinic have been really helpful luckily as my Endo went AWOL and cancelled my appointment a few days before my thyroid op. Not helpful in the slightest is an understatement.
Now I'm back on the waiting list for an endo appointment?
It must be very difficult for you, hope you get answers soon.
Really sorry to hear that you are having so much difficulty - it doesn't exactly help when you are so worried over something. Good that your hubby was there. Will keep fingers crossed for you!😙
Do you have a big sterile bottle available? Like a 5/10litre one.I had to collect 24 hours of urine for a test done by the labs and the bottle was filled in the time.
We sterilised a large plastic bucket to place in the toilet seat to collect then needed a sterilised funnel to put it in the bottle.
It certainly didn't fit in the fridge , but the advice sheet told us to keep it in a cool clean place , so we kept the heating off and it stood in a spot in the shower cubicle as we could keep the bathroom cold.
It was certainly an unusual sight for others taking their little urine bottles in for the lab van on the morning I had to hand it in when my giant handled plastic bottle was pulled out of my bag!
Not sure whether suggesting another group is allowed but you will find more advice I suspect from joining a specific group on for Hyperparathyroid patients. The best by far is Facebook - Hyperparathyroid UK Action4Change. Many on there have experience in fighting their way around the system and testing. I was diagnosed with ease in comparison and had no struggles obtaining all the testing in the lead up to surgery. There is a website to but access to the members is what uou need. Best wishes.
I was just going to post some advice but was pipped to the post! So, I will just second the recommendation to join the Facebook group Parathyroid UK, Action4Change. You will see from that the difficulties members have had/are having with diagnosis, the protocols to follow, and help regarding GPs and surgeons. The lady who runs it is a great campaigner and has secured treatment for many whose symptoms were ignored. Do check this out as her advice is invaluable, and she can tell you how to proceed. You need specific help from those familiar with parathyroid, not thyroid issues. Hypothyroidism and its diagnosis is a walk in the park compared to that of hyperparathyroidism. Good luck!
Ok I presume you want to know as I did if your purging calcium in your urine? Which can indicate it's in your blood, and why is it in your blood?Don't worry my GP as also called me a hypochondriac and a waister of his time, even when my thyroid went overactive and he couldn't diagnose or send me to the dreaded endo..went into thyroid crisis and lost it in 2019...am I a hypochondriac now doctor? Well you'd think not, but after my PTH and calcium went over range and 2 endos saying I probably have primary hyperparathyroidism (2020) my GP and endos are bk to the hypochondriac waister again...do they never learn anything 😠
I purchased a calcium test off Amazon you urinate then mix the 2 components then place it in to a small test tube place it next to some text they give you..if you can clearly see the print your ok if it's unreadable cloudy then you have calcium in it.
But to be truthfuly honest a 24 hour urine test is the way to go because my endo would not accept the Amazon test😠
Getting bk to normal PTH or normal calcium it is possible to have a parathyroid problem with top end PTH within range.. and top end calcium within range.
A PTH over range with a calcium top end within range is normocalcaemic hyperparathyroidism,and you can have a PTH top end and a calcium over range it's the same thing, your parathyroid is acting up!! In a healthy person if the pth is in mid top range then the calcium will be in the bottom to mid range or the pth is mid bottom and calcium is mid upper..this is the sea saw method.
However if both calcium and PTH are over or top end then you have a bad relationship between PTH and calcium.
But here's the bad news..I've been fighting the NHS with this since 2022 but I was also diagnosed in 2004 with the same thing primary hyperparathyroidism but we're dismissed after a normal blood test, I've gone on to have many health issues one being kidney stones but because I managed to pass them they the so called specialists don't think I have a problem with kidney stones (you just can't make it up) last kidney stone passed 2019😠
Through a lovely parathyroid surgeon in Oxford (private appointment) he as identified the node (adenoma on my left side of my neck) now waiting for the NHS to do all bloods 24hr urine calcium and the pet chlorine scan in Liverpool...but they are so far refusing to do these tests because I went to a private parathyroid surgeon, I know this is bull and I'm fighting with all I have 👊 its such a drag with the NHS on the subject of parathyroid problems they know little to nothing of them and even less of how to diagnose it or treat it, they would rather do a watch n wait with you.....watch n wait for what? A heart attack, a stroke a stuck kidney stone 🤦 honestly I have no faith in the NHS anymore 😠
That's my horror story, I hope your outcome is better than mine and you manage to get someone who knows what they are talking about 👍 best of luck💚
Thanks for sharing. Based on everyone’s helpful advice I did a similar urine test bought online over the weekend. Super easy! Showed calcium completely normal, plus I already had normal PTH. So I’ll test again when Vit D is over 100 as recommended above and keep an eye out for symptoms. Looks like adenoma and no symptoms, no raised or lowered levels associated. GP will follow up MRI report in a couple of weeks. Thanks for your help, I hope you get the help you need after the private specialist appointment. Keep on battling 🌱🤗
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