GP refuse to test Calcium & PTH until Jan 2015!

Hi All

I've just been to the GP begging to give me regular PTH & Calcium but they have insisted it's not needed but are willing to test every 6 months    I nearly burst into tears! I don't know what to do! 

Lucie x

Just to add to this - I showed her my email response from FP who said HPTH is a possibility but still unproven and to keep regular testing but she didn't take that into account. I'm tempted to change my GP to a smaller practice that I know of, the GP there knows all his patients!

Feeling frustrated!

Oh Lucie, that is disappointing - yet another bl**dy 'know it all yet knows nothing' GP!  Grrrr.....this makes me so cross, especially in view of FPs opinion and advice in black and white! I suppose in her uneducated opinion every six months IS regular testing! Yes, changing GPs is an option to see if you can get a more sympathetic one but why not try taking advice from PALS as this is an issue with NHS service, or you could write another email to FP expressing your gratitude for his input and how much you appreciate his advice (a little feather stroking never hurts ...), and what would be his recommendation on how often you should be tested so that you can pass this on to your GP. Worth a try, even if only to wave it in front of your GP's nose ...... Of course, if FP says every six months then you're stuck.

Jasmine x

Jasmine, honestly I have shed tears since I came home.

I was happy with FP's his response, I felt like he agreed with what I had been trying to get my GP's to acknowledge and I was happy to have regular blood tests but not every 6 months :-( how can that show an irregular consistency, it's too long a gap. For me, who has been trying to figure out this battle for well over 18 months, I'm not happy with that. I'm 31 for goodness sake, I want my old self back. I have been tempted on a couple of occasions to switch GP's as I feel they are ignoring me, they don't seem to want to acknowledge the abnormal tests. How are we supposed to take on board advice from a highly regarded Consultant without the support of our GP.

Sorry to put a dampener on your Friday - it's nearly the weekend

Lucie x

Hey you haven't put a dampener on my Friday Lucie, I'm having quite a sh*t day myself today with symptoms (and my dry eye has reared its ugly head again in the past few days after a few months respite, so I am light sensitive +++, have tears streaming down my face, blurred vision and want to rip my sore and painful eyes out with my bare hands ....) and bad days always make me more mindful of how others are suffering too, and that I'm not alone with all this cr*p, so please don't think you're putting a dampener on anyone! we're all here to support each other.

Jasmine x

Thanks Jasmine. I'm sorry you want to rip your eyes out, I hope you feel better to enjoy the weekend. When did life become a headache LOL I want to be 8 again  all I had to worry about then was making it home before the street lights came on!

Lucie x

Hi Lucie,

I some ways I find the response from doctors more upsetting than the symptoms. I remember the endo offering to ask my GP to retest my levels in a year! I was so shocked I didn't know what to say. Like you I was thinking what am I supposed to do until then!

By all means change GPs but I'd also recommend trying to get hold of your local health boards guidelines on testing. I have fallen foul of the vitamin D ones in my area which insist on only testing every 6 months so even when the endo requested it, the lab refused to do it. If this is the case you are unlikely to get much further with another GP, but they may at least be more open to FP's opinion. Otherwise, you may just need to make such a fuss they do it to get rid of you. Or get a referral to Hammersmith. Don't give up, you know your symptoms are real and need addressing. Keep fighting til you get somewhere.

Jasmine, sorry it's a rubbish day. 

Love
Dee
xxx

Oh Lucie, what a disappointment GPs are, I'm so sorry you've been set back in this way, but Jasmine has worthy advice to follow. Perhaps PALS is the best option in the short term or at the very least a complaint to the Practice Manager and a demand for a second opinion. 

I must say it's not encouraging to find so many Doctors who don't seem to care too much about their patients. I'm still reeling from the fact that my surgeon doesn't believe pHPT causes symptoms! The whole medical profession needs retraining on the subject of HPT.

Jasmine, I'm so sorry you're having a miserable day. My not allowed symptoms have waged war on me today and I sympathise with you in shared cr*p.

Love and hugs 
Brigitte xxxx

There's some good advice here, Lucie, as to how to get around this problem. I would do as Jasmine suggests first of all and ask FP how often you should be tested.

If your current GP won't agree to that, then I would change to the practice you have in mind. It might just be the motivation you need to move in the hope of finding a GP more sympathetic to your needs who will work with you on this, and not against you.

You shouldn't have to pay for testing yourself, but you could contact:

http://www.labtestsonline.org.uk/contact/

and ask how much they charge for Calcium and Parathyroid Hormone testing.

Another thought would be to insist on a referral to an endo at your local hospital for a second opinion in the hope of being referred to one who knows about HPT.

Have a think about it and keep us posted on developments. I'm sure we'll have other suggestions to make for you.

Love from Tigerlily xxxx

Hi Lucie
GP is an a**e I agree with all the suggestions the ladies have given! good luck.
Jasmine I'm so sorry you are having a really bad time sore eyes are hell. Hope it gets better soon.
Lots of love Amanda xxxx

I totally agree with Tigerlily - you should NOT have to pay. 

But fyi I used these guys to get my ionised calcium and PTH done

http://www.medichecks.com

Pricey, but the only way i found to get ionised calcium since UK doctors don't even understand the relevance of it. The customer service was fab and the results very quick. Cannot fault the service at all. They are happy to talk through things over the phone if you have queries and will do pretty much any test you want and fast.

I also discovered Birmingham local health authority do cheaper vitamin D test via post for anyone in the UK but I haven't used the service. Still hoping to re-educate my local health board before I shell out even more.

Dee
xxx

Hi All,

Well, I just bit the bullet and emailed FP again asking for his advice, but also apologising for nagging him again.

I've been in a foul mood all day because of those dam GP's! 

I'll sit back and wait now for a response from FP, may take a while but at least he has some excellent advice.

I hope you all have a good weekend and let's try and relax   

Lucie xx

Dee i have used the Birmingham Vitd service and the result was wrong.

The problem is likely to be the finger prick test which is not reliable, too easy to do it wrong and time it takes to get to the lab.

I had 2 tests done at the same time, GP test came back at 41, finger prick 70 ! GP test was correct.

Nelly

That's definitely worth knowing Nelly and just goes to show how misleading blood tests results can be and how many factors affect them.

Did you query it with Birmingham? If so, did they accept it wasn't accurate and give you a refund?

Dee

Interesting i also had completely different results for birmingham which was the finger test and than had blood done at GP, Birmingham said i was low, gp came back all ok. I did email birmingham and explained about different results. i never got a reply.

keep fighting Lucie,  alot of GP only want to do Yearly bloods for calcium, pth. I am having bloods done every 3 months - but i do have other health issues.

I get private bloods done through company called blue horizons.

best wishes to all

Lozza

My goodness, Lucie, I'm so sorry to hear about your dingbat doctor!! Definitely find another doctor!! I remember going crazy having to wait 2 months for bloodwork, but 6 months is totally ridiculous!!! As far as putting a damper on our day, I think we're all pretty well dampened already. A little more dampness won't hurt anyone! That's what we're all here for.

Jasmine, I'm also very sorry to hear about your eyes! Dear God, have you not suffered enough?! I do hope you get some relief from that VERY soon!

Audrey

What an a**e! Forgive my ignorance but can't FP request your gp to test you? I know my gp will get in touch because he's had a letter, they seem to talk a lot (never to me usually!) although I did have a blood form sent to me by the gp once and I was just able to choose where to go to have it done.

Sorry, that's not helping at all! I am just so angry for you and can't believe how bloody awkward they are being.

Morning All

Well I got a response from FP - I couldn't quite work out what he said  as I'm sure sometimes it's a riddle but it was along the lines of it's hard to assess the situation from the outside but having regular monitoring is necessary as HPTH is still unproven in my case but an agreement between the GP and Patient should be decided on the blood work duration. 

My GP mentioned that sometimes Labs question why patients have regular testing, is this true?

Yes, Lucie, this is true sometimes - and I've even had blood test results come back where the lab has decided that it wasn't necessary to test for something - usually thyroid hormone levels when they decided that the TSH was "normal".

I find this unbelievable!! And an endo once refused me an ultrasound of the neck because "my colleagues in imaging would not thank me for sending you for an US of the neck when it's not necessary" (i.e. my calcium wasn't high enough to have pHPT - but an US some months later revealed a 2cm PTH adenoma ..... I rest my case!)

This is why it's important for the GP to write on the blood test form "possible hyperparathyroidism" or some such explanation. I've even had a GP tell me that if they write "please" underlined that is an indication that the lab is NOT to refuse the test.
These labs can be very uppity!

Sounds as if FP was trying to be diplomatic with his reply so as not to upset your GP. I would take his email back to the GP and try once more to get testing at least every 8 weeks (I would push for monthly if I could). I would say something along the lines of "this is the endocrine surgeon whom I would wish to see about this issue if it does turn out to be hyperparathyroidism, and I would be grateful if you as my GP would work with me to get to the bottom of my problem. If you would agree to monthly blood testing this would give Mr Palazzo a run of blood tests to enable him to see how my Calcium and PTH levels are running - to see the climate and not just the weather, so to speak. I believe it would be more cost-effective to monitor my condition with regular blood testing, rather than having me running to the surgery every week with my symptoms."

That's just my view, Lucy. Take what you want out of it and leave what won't be useful to you. I do hope your GP sees the sense of regular testing for you.

Love from Tigerlily xxxx

Hi Lucie, I agree with everything Tigerlily has said, in fact she beat me to it and my post would have been virtually identical! Mr P is very mindful of the sensitivities of other medics involved in a patient's care and I've noticed similar diplomatic responses in letters to my doctors, particularly where he is suggesting an opposing approach. Tigerlily's suggested approach to your GP is exactly how I would play it, be polite and respectful to your GP, even though he or she may be an intransigent fool and deserves a poke in the eye with a sh***y stick, and appeal to their professionalism and better nature in requesting a joined up approach to finding out what's causing you to be so poorly. A little bit of feather stroking often goes a long way I find ......

Meggy, I think the reason FP can't request any interventions with the GP at the moment is that Lucie has only so far emailed him and asked for an opinion on her 'case' and hasn't actually been referred to him, so as she isn't actually FP's patient he has to be extremely sensitive in his response and choose his words carefully to avoid causing offence to said GP.

Jasmine x

Aha, thanks Jasmine, thought it seemed a bit odd that a gp would refuse to listen to a consultant he'd referred her to!

I'm not stupid but looking at the random comments I've made on here I must come across as really thick, mixing up conditions (FFH, FHH? (FFS?!) and MEN1) and I keep getting so confused with what stage everyone is at with their diagnosis/treatment. Sorry guys, just bear with me please.

No no, don't worry Meggy. I find it difficult to remember how far everyone has got with their treatment (if any) and what's going on. Don't worry about it. Some of the time I can't remember my name and as for spelling it, what a joke! I speak fluent gobbledegook and when I write things down I wouldn't know what I mean if it wasn't for spellchecker   Don't ever let anyone call you thick, even yourself! 

Love and big hugs 
Brigitte xxx

Meggy don't worry, you're not stupid or thick! This disease messes with your brain - literally - and believe me I've had more than my share of dumb blonde moments, we all have, even though we're not dumb and some of us aren't blonde! In my case I'm a dumb old grey, cunningly disguised with strategically placed highlights haha! And I certainly can't remember everyone's story, just every now and again I'll have a 'ping' moment where I can think about or remember something with real clarity but it's a one off, few and far between situation, trust me. We all bear with each other on here Meggy, it's the nature of the beast, and we're all a work in progress ....... and similar to Brigitte I speak fluent scribble .....

Jasmine x

Thank you all for your replies, some good advice I will take on board.

Meggy, Jasmine is right. I have only had email communication with FP so unfortunately, he cannot help me any further at this point. The trouble I am having is that I have seen 2 Endocrinologists, one at Colchester General and another at a private hospital in Essex and whilst I get them to agree I have had elevated Calcium levels, they then run their own set of new labs only to find my levels are "normal ranges"  so of course they write to my GP, no further action blah blah blah and my GP looks at me like she's just scraped me off the bottom of her shoe when I ask if I can be monitored for HPTH. 

I just cannot get a GP on board with me, they will not listen to me when I show them by abnormal results because they have letters from Endo's saying I am perfectly healthy. I can't seem to get through to them that it hasn't been ruled out from blood work taken in January and even FP agreeing that my levels are inconsistent and monitoring is the only way to prove a diagnosis.  How much clearer could it be?!

Unfortunately, this has taken over my weekend, I find myself in a constant train of HPTH thoughts! I haven't replied to FP as there isn't much else he can advise, he's stated the obvious. So it's either a case of going back and trying to get a GP on board as Tigerlily and Jasmine  suggested or a change of GP practice 

Lucie x

Lucie why don't you ask for a referral to FP, if your GP won't do it on the NHS then ask for a private referral if you can manage the cost of course.

He can give his opinion and either take things forward or not. It seems to be the only way you are going to get anywhere. Sometimes the quickest route is to bypass the GP, I have done it several times and found my own preferred consultant. 

Nelly