Email to endo

Hi All
I have sent letter to Endo complaining about response from registrar etc ( too much to repeat ATM) asking for a lot of answers.
I have received a letter cc'd to GP which came after my email of this morning so it's was posted this wk. All it says is that calcium still raised PTH mid range and urine calcium is 2.2 mol/l which she says is low. This was the old test I did 2 mths ago, she says urine creatinine not done so she couldn't rule out FHH.
Does anyone know what that level of calcium is I've looked on the converter and that is what it shows as example of PTH result but as I haven't got urine creatinine result I can't work it out. I think my serum creatinine was poss 60 not sure.
Just hope they get back to me soon.
If I did have FHH surely my Sister and Twin Sister would have high calcium and they've had theirs tested recently and it's all ok ?
Amanda xxxx

Hi Amanda,

they need to do blood calcium/ blood creatinine and urine calcium and urine creatinine.

I don't think you can calculate this without all 4 results. But calculation is as follows.

To exclude FHH, the Ca : Cr ratio should be > 0.01

Formula for your information:

Urine Calcium (mmol/l) x [Plasma Creatinine (umol/l) / 1000
Plasma Calcium (mmol/l) x Urine Creatinine (mmol/l)


Good for you with sending in a letter, they need to send you a copy of all blood tests, might be worth contacting your GP and see if they can organise this test.

They honestly should have check this with the urine test, but nothing surprises me. I went for recent bloods and they managed to miss out the vit d- which is the test result they really wanted !

best wishes

Lozza

Sorry Lozza I should have said that was old result 2 mths ago which they forgot to do urine creatine.
I've done all that and handed it in on Monday so I'm hoping they can pull their blasted fingers out and do the calcs ASAP.
Thanks Amanda xxxx

Hi Amanda,

No worries, I would try and copies of these tests for yourself, hope you get info from them soon.

best wishes

Lozza

Hi Amanda

I think the average for a woman is 5 mol/l, so yours is below average.

For comparison, mine was 8 when last tested, so I'm obviously excreting calcium in my urine, which is a risk factor for kidney stones in the future.

Not that it helps much, just an extra bit of info.

Love Tigerlily xx

Hi All 
Got a question re FHH just incase the Endo decides that's what I've got !!!! And says go away and put up with the symptoms     
I'm hoping 2nd 24 hr urine sample will actually be tested properly etc.
It's genetic right ?
So since birth I would have had high calcium yes?
Also it runs in families ?
So I wouldn't just suddenly have got it ?
Wouldn't I have had these symptoms from birth then ?
Also it is extremely rare ?
I need to get some answers to these questions as I'm sure the Endo is not really clued up about FHH either and if I have to wait another 4 months to see the Registrar to discuss this I think I will go mad.
Thanks for any help on this.
Strange that it is so rare yet so many of us are worrying that our Endos will put everything down to this.
Amanda xxxx

Hi Amanda

Yes, it is strange that suddenly FHH has appeared on our collective radar! I think it's buzzed mine because Mr Palazzo mentioned it as a possibility as I've had two unsuccessful surgeries and he wants to first rule it out before going down the same route for a third time, and having read up on it as a result it has given me the heebie jeebies because there actually is no treatment required as it is literally, in simple terms, a naturally higher calcium level which is normal for the individual so no treatment needed.  I'm afraid of being misdiagnosed with this because I can't face these debilitating symptoms for the rest of my life.  HOWEVER, having said that, and to answer your questions:

yes, it's genetic so you would have been born with high calcium and surely it would have been detected MUCH earlier in our lives, right?

Yes, it runs in families but a family history can't always be identified.

Yes, it is incredibly rare and most endos would never ever see a case in their entire career so that lowers the odds a tad?

It's usually completely asymptomatic, so no symptoms and no adverse effects on your health and wellbeing - and that's definitely not us is it?

All things considered, it's highly unlikely any of us actually have it but I have a sneaky feeling that there is a new NHS directive instructing endos to rule it out first to save money on going down the longer route  of diagnosis and surgical treatment just in case it's not necessary; a cynical viewpoint I know but FHH does seem to be figuring more prominently recently considering how incredibly rare it is don't you think?

Jasmine x

http://www.clinmedres.org/content/11/4/219.full

Amanda, sorry to hear you're still being messed about. Have attached a link to a paper about urine calcium showing that it is not a useful diagnostic tool. In fact, it could be argued that as pth increases renal reabsorption of ca that many with PHPT could have low ca in the urine until the renal tubules are overwhelmed.

Anyway, good lick with the accountant, I mean endo....

That's a really helpful link Johnny, thank you.  It will help me too having this information under my belt for any future 'discussions' I might need to have to fight my corner.

Jasmine x

Thanks Jasmine 
You have just reassured me that what I was thinking was right. I think the first thing I will do if I'm presented with this, is obtain every calcium test I've ever had with my doctors and I've been with them approx 20 years and I'm sure prior to the one which led me on this thrilling journey, I must have had several of them done.
I've been having ferritin infusions for over 5 years and I know they've done full blood tests, I can't get any joy from genetic high calcium from my parents as they have both passed away, however both my sisters have been tested recently and they are both in normal range and one is my twin. I think you are so right about the new directive it's too much of a coincidence that we all seem to be in the same boat.
 Johnny that is a very interesting link it could come in useful if we find ourselves in a difficult position with the Endo deciding we aren't really unwell anymore.  Thanks.
Amanda xxxx

Hi Amanda

Just thought I'd ask, as it is a question I've never asked before in connection with a few health issues.

But do you know WHY (sorry to shout) you have to have these ferritin infusions? What I mean is, why is your ferritin low enough to have to have it added into your system by the infusions?

I ask because I have a 3rd cranial nerve palsy that causes double vision. When it was diagnosed (by a very thorough opt ...-whatevertheyare at the Eye Clinic) she could not understand WHY (sorry!) she had diagnosed this at such a late stage - i.e. why it had not been picked up before now (age 59).

Do you know WHY (sorry again!) you have such a low ferritin level?

Love Tigerlily xx

I don't know if it helps, or not, but I have recently had my third iron infusion in 4 years.
This is due to having a limited renal function (Stage 4 CKD).  Over time, my Ferritin and Hb levels drop and there are trigger points where the renal consultant says that it is time for an iron infusion.  I also notice less stamina and breathlessness (although these are also Hypothyroid symptoms).

Edwin

Tigerlily & Admin 
I have never been able to get that question answered, I have just been told my body for some reason does not store iron, I last spoke to big chief haemo and he said that he has experienced it before and they couldn't find a reason for it !!!!
The only possible reason I can deduce is that the Nexium (Esomeprasole) I have to take for reflux obviously reduces the amount of stomach acid and this stops iron being absorbed properly. This is only through google research !! No doctor has ever confirmed that. He said it's usually througher lower gut problems but I've been tested and there is no evidence of anything going on.
I have appt next month with them to see if I need infusion yet so I'm going to ask the same question again.
Depending on how low it gets I get terribly breathless, shakey, palpitations, sore tongue, white gums and look vv pale.
That is when it gets to 3 or 4 which basically means I don't have a lot left.
Perhaps I'm a Vampire !!!! Never did like looking in the mirror, love garlic though so I doubt it.  
Love Amanda xxxx

Amanda

I've just idly Googled "ferritin levels and sleep" and a lot has come up to say that these are connected - as the ferritin levels drop this affects sleep quantity/quality.

Just a thought.

Love Tigerlily xx

I do think my levels have dropped I'm getting extra palpitations and white gums !!! I'm speaking to GP hopefully this morning re back pain and headaches and as I've got Haemo next mth I need to do ferritin test soon. So I'll get that sorted as well. I'm wondering if all this extra pain could be linked to ferritin, going to have a quick nosey on dr google, doesn't help the headache though.
Amanda xxxx

Dr Google says yes so I need my iron checked ASAP xx
Also it says muscle pain so that may be why I'm in extra pain so suddenly, I have appt with GP this morning now, I've just been deemed sick enough to bee actually seen  
Unfortunately the GP I'm seeing is very lovely and sympathetic but that's as far as it goes. She doesn't instigate anything just waits for me to suggest what I think is wrong so I will get ferritin blood test but not sure what else.
Wish me luck.
Amanda xxxx

Yes, check it out, Amanda - you might be getting lower than you think, and perhaps sooner than has been foreseen by the dates of your appointments.

Love Tigerlily xx

Amanda Lynne wrote:Dr Google says yes so I need my iron checked ASAP xx
Also it says muscle pain so that may be why I'm in extra pain so suddenly, I have appt with GP this morning now, I've just been deemed sick enough to bee actually seen  
Unfortunately the GP I'm seeing is very lovely and sympathetic but that's as far as it goes. She doesn't instigate anything just waits for me to suggest what I think is wrong so I will get ferritin blood test but not sure what else.
Wish me luck.
Amanda xxxx

Go for haemaglobin as well.
Low Hb means less oxygen getting to the muscles = muscle ache.

Edwin