The FHH chair is now a bench

First topic message reminder :

Hi everyone,
This will be short but right now am feeling pretty awful.
Monday we took Scamp to the vet and he has joined Tazz and Steve.
Tuesday I had my appt with Mr P for my genetic test results, four months and still not back so had to wait for them to get it faxed from Exeter and then told it is FHH.
This morning, ring my endo sec asking where is my six month follow up appt after being seen last Sept and it is due now and I need to discuss options re how does it affect myself and my family.  Told many patients are way overdue their appointments, am on list but it will be a while as he is going on vacation soon, so it may be another 3 or 4 months before I can be seen, they will probably wait for Mr P letter which he also told me are delayed.  
So feeling left out to dry, all my muscle aches and reflux not caused by FHH, it runs a benign course, aches, brain fog etc depressive feelings maybe thyroid and discuss with endo.
Soooo at least Amanda has some company now if she can stand me.
Life is a bit suck it up but maybe in a few days I will crawl out again.
Also back to worry about my neck lump as stuff was ruled out due to having a raised PTH with calcium, but if FHH skews everything blood test wise, how do they rule out lymphoma or Hodgkins??  So need to try and see GP as not Mr P area.
Hugs everyone and thank you all for being here when I needed a boost over the last year.
Sue xx

Hi Dee and Amanda,
I am sure you have seen this paper before but it sure is interesting reading.

http://www.eje-online.org/content/159/6/719.full.pdf

It explains an awful lot about Vitamin D status and FHH and that thee is still conjecture on how it works.  One question that they ask is whether FHH predisposes to PHPT?  Also in their study they state that Vitamin D status is irrelevant in FHH patients for the 24 hr urine and CCCR, the ratio is always low.  Soo my first 24 hr urine Feb 2014, Vit D status unknown was low.  D tested in June and low at 42 so supplemented and got it to 61, a repeat 24hr urine and my calcium had increased dramatically, wonder what it would have been if allowed to get it up to normal?  It certainly seems to think that depending on the mutation that there are many degrees of FHH. Another interesting point was that proven PHPT patients are not gene tested, it would be interesting to see if any also had minor mutations?
It sure is a fascinating subject and good luck with your thesis!
Hugs Sue

Hi Sue
Yes I have seen this paper and it raises many questions. My Vit d was always low but with intermittent supplementation plus last years summer sun it got up to 74. I think in my case it reduced my calcium urine output. Well that's what the Endo said, in my calculations it seemed to remain roughly the same.

If yours increased would that not indicate that there is possibly a PTH tumour ? Did FP not consider this or did he dismiss you because you had FHH?

I feel the FHH diagnosis raises as many questions as answers but no one seems to be able or want to go into these.

Love Amanda xxxx

That's a really interesting paper and I hope it leads to some studies with bigger groups internationally.

So it suggests that if you have pHPT your 1-25(OH)D will be much higher than if you have FHH alone. Have either of you considered asking to have that type of vitamin D tested? I suspect the local lab may not be able but some of the bigger labs would so you could go down the medichecks route.

Sue, I think your plummeting vit D (25(OH)D) argument is a strong one (though you need an unusually bright endo to get it.)

Fingers crossed,

Love
Dee
xxxxx

Hi Ladies

When I was trying to rule out sarcoidosis as a diagnosis, I asked my GP if we could test 1,25 (OH) Vit D. When he asked about testing it, the comment back from the "powers that be" was that it was "not indicated", so I could only have it tested if I paid for the test myself.

I duly paid over the £68 and had it tested. It went all round the hospitals - first to Addenbrookes, then to Glasgow, and ended up at Norfolk & Norwich Hospitals, who actually did the test. It came back at 67 pmol/L and the range is 42 - 143, so I thouine was a bit low.

An acknowledged Vitamin D expert is Dr Michael Holick in the US and (wonder of wonders) you can contact him for his advice on Vit D related issues and ask him questions - and he will reply!!

Go to: www.drholick.com and post your question on his Question & Answer page.

His reply to me was as follows:

A blood level of 1.25-dihydroxyvitamin D is of no value in determining a person's Vit D status. Only 25-hydroxyvitamin D can tell you about your Vit D status. However, 1,25 dihydroxyvitamin D can give an insight as to whether the patient has primary hyperparathyroidism or sarcoidosis.

Dr Holick seemed to think that I might have normocalcemic HPT, but of course it turned out at surgery that I had 3 hyperplastic PTH glands (none of which showed up on the nuclear scan).

I still think, like you, that the active form of Vit D in the body (1,25 ...) is relevant to our researches, but it's not easy to have it tested unless you have a really sympathetic GP or endo who can understand why you are asking for it.

Pressed send without sending Love and strength to you both (the strength of the sent strength being of the "Gawd, give me strength" variety!

L ove from Tigerlily xxxx

So sorry to hear you are all dealing with so much! Even though I have my share of issues, FHH is not one of them, so I am not of much help here. I'm sorry.

Edwin, GREAT article! I checked out a couple of the other articles at this site, and they are all very good! I actually printed a couple of them, and I am taking them with me to my next appointments with my nephro and my endo. My poor endo seems rather clueless about most of my issues. I'm hoping she will take notice of these, but since they weren't written by doctors, she will probably say something about that. It bothers me greatly that doctors only listen to other doctors and don't listen to their patients! I would think by now, after dealing with me and my issues, and realizing that I know what I'm talking about, they might start to think differently. I know I'm not the only patient who has presented to them armed with GREAT information, and then proving them wrong in time! Why can't they all wake up and change their ways of thinking?!

Audrey

Hi sue
I hope you don't mind me Asking a few questions.
My endo said in fhh calcium levels are always high and will never be in the normal range. Was this true for you?
Can I ask your calcium creatine ratio? And urine output.
I've found so many articles about the 2 existing together for and phpt.
My dad has had a few high calcium and normal ones.
and a low urine output but he has a vit d of 27. He was put on vit did at 800 iui daily and had a urine test 4 weeks after starting.
Unfortunately I don't know if he is taking the vit d and my Mum said he didn't do the urine test properly and did put in the ones in the middle of the night and when he took the dog put for a walk.
I've had fhh ruled out but maybe it's possible I have it and so does my dad.
very confusing

Rachel xxx

I haven't been on here for ages and have only just seen this. I'm so sorry, what an absolute pain. I don't see how FHH means that you don't get symptoms, surely if you have dodgy blood levels then you are going to feel awful? Why can't doctors connect the dots?! I'm so angry on your behalf. I hope the last month has brought some peace of mind and a few more ideas from the medical people to help you.