Just a vit d deficiency

Date	PTH (15-65)	Corr. Cal. (2.2-2.6)	Vit D dose	Vit D (50-144)	Phosphate (0.8-1.5)
20.01.14	Not done	2.66	None taken	Not done	Not done
23.01.14	81	2.62	Started 400 units	35	0.83
20.03.14	54	2.65	Started 800 units	32	0.64
31.05.14	Not done	2.56	800 units	37	Not done
10.06.14	53	2.58	Started 1600 units	47	0.62
06.08.14	63	2.50	1600 units	66	0.77
15.09.14	37	2.59	1600 units	61	Not done

 
Hi everyone
 
I saw endo last week and I am very confused he wanted to discharge me as he thinks I have a vitamin d deficiency and not PHPT.  Due to my last blood tests he thinks I am now cured from his endo services. He told me to go back to my GP as he can not explain my symptoms: Pains in bones – mainly shins, wrists and hips, Heavy legs, Weakness in legs and wrists, Tiredness, Palpitations, Dizziness, Nausea, Muscles ache, Headaches, Lack of energy, Emotional – cry all the time, Snappy, anxiety, Forgetfulness, Urinating more, acid reflux.  
 
I have osteopenia in my spine (-2.3) forearm (-1.3). I have SVT (irregular heart beat).  The ultrasound scan I had on my neck in July (still awaiting for a copy) stated inconclusive to parathyroid tumour but it did show enlarged benign lymph nodes and thyroid nodules.  Do either of these happen due to PHPT?
 
Would a vit d deficiency be classed as secondary hyperparathyroidism? If so would my calcium levels be lower than the low end of the range?
 
The endo stated that it would be dangerous to continue looking at PHPT when something else could be causing the problem and that’s why I need to go back to my GP.
 
What do you think should be my next step?

I think your endo is giving up to soon. Your calcium is borderline high if it was borderline low with high PTH and low D I would think secondary hpt. If your gp is willing to run labs for you, to see if it trends back up that is what I would ask for. Best wishes

Hi Kathi 

Thanks for your comment. 

Yes I felt very dishearten when he said he was going to discharge me.  I am wondering if my GP would refer me for a second opinion, she will probably said no, not while my PTH is at the lower end of the range. 

Just a thought if I stopped or lowered my vit d supplement do you think my PTH would go back up?  If it does, does this mean a vitamin d disorder or PHPT? So confused?  

I`ve got an appointment next week with my GP I will listen to what she has to say! 

Take care 

Mel x

Hi Mel,

My personal diagnosis would be that you need a new endo. You have high calcium, all your symptoms are consistent with high calcium and you need them sorting. This endo clearly isn't up to the job. Fortunately it seems the majority of them aren't.

You can see what happens if you stop the vit D, but PTH is nothing if not pesky. Unless a rogue Parathyroid is churning out a lot of hormone it may never get out of range, one minute it's up, the next it's down and readings can be influenced by a large number of things including how the local lab does their testing. Just because your last reading was lower (though still inappropriate alongside the Ca level) it doesn't mean your levels are decreasing.

If their excuse is that they don't want to miss other things whilst looking at HPT, personally I'd say fine, do whatever tests you want but insist on monitoring PTH, Ca and vit D. I would keep pointing them towards the literature concerning pHPT and its symptoms and politely but firmly keep the pressure on them to refer you to someone who actually knows something about HPT. You may find the data on how pHPT patients have low vit D from Dr Norman useful.

I've had the whole 'it's your low vitamin D causing the problems' diagnosis. It's rubbish. Secondary HPT caused by vit D is actually rare. My feeling is (unless you have kidney failure) you'd have to live in a cave for years to get to the stage that your parathyroids got themselves in a state of overworking constantly and more importantly it would be accompanied by low vitamin D and serum calcium! You don't live in a cave, you don't have consistent PTH (which shows some of the glands are at least doing something) and you do not have low vitamin D or calcium. How is this a vitamin D problem?

Trouble is, we know from experience that it's difficult to get doctors to listen to patients - they don't know what's wrong with you so they'll want to get rid of you. So persuade them that the best way to get rid of you is to refer you to someone else (of your choosing.)

Also, don't rule out seeing a rheumi or bone specialist since it appears that these disciplines have better training concerning HPT symptoms and they may be able to get you a referral to a surgeon bipassing the goats and monkeys in endocrinology.

Unfortunately I can't speak from successful experience. I'm currently back on the waiting list for endo, having been previously forcefully discharged and then referred back due to a subsequent high PTH, though my last test then came back normal (pesky PTH!). Also, I live in Wales and we are not allowed any choice concerning who we get to see in the NHS.

Don't give up. There will likely be more knockbacks and goats and monkeys to come but you have to push through. Keep on keeping on.

Lots of luck,

Dee
xxx

Hi Dee,

I totally agree that this endo is not up for the job, the thing is he was a locom when I saw him in March and now his got the permanent job as a endo consultant, no hope!

The endo, after some pressure, will see me in 9 months and write to my GP to ask for blood tests every 3 months, this was the best I could get.  When I see my GP next week I will ask to see a rheumi (great idea) as the endo said with my calcium levels I should not be getting the bone pains, muscle cramps etc that I am getting.  

I feel for you Dee these appointments take so long and you build yourself up for them.  I was unaware that in Wales you have no choice, that's ridiculous in this day and age.   Do you take vit D supplements? 

Take care and I hope your appointment comes quickly.

Mel x

Dr. Aud weighing in here. No, Mel, you do not have a vitamin D deficiency. You have hyperparathyroidism!! Nobody should have levels like yours! Why is this so darned hard for doctors to understand?!! This REALLY angers me!!! I too was told I had a vitamin D deficiency. I knew my doctors were wrong! They prescribed 50,000 IU of vitamin D bi-weekly. My vitamin d went from 23 to 99, and my calcium and PTH levels continued to look terrible! I finally just stopped taking the vitamin D. I kept insisting I had hyperparathyroidism. None of my doctors would believe me! Thank God Dr. Norman finally did, after also dismissing me the first time I contacted HIM! It was one #@!! of a battle, but I kept fighting. You must do the same. Don't ever give up! One day a very wise doctor will realize what the problem is and get you in for the surgery you so badly need!

Print my levels and take them to your doctor! Tell them I had 2 tumors removed! Tell them to open their eyes!!

Hang in there!!!

Audrey

Wise words, Dr Aud!

J x

Hi Mel,

I don't take vit D. I have tried it 4 times in total (twice with capsules, and twice with tablets just to prove it wasn't an allergic reaction) with the same effect. The second day I feel great, brilliant mood and extra energy, over the next week I get increasing joint stiffness then pain, headaches, nausea, tinnitus to the point at which I have to lie in bed with my eyes closed. I've never lasted more than a week on a dose of 1600 daily before stopping.

I managed to correct my insufficiency (38.2) by sitting in the sun for 20mins every lunchtime over the summer so my last vit D was 74.2 I think. But now I suspect this has screwed up my estrogen levels so I've stopped and guess my next test due in December will be back into insufficiency again. Ho hum.

The most priceless thing the endo said when discharging me previously was 'Lots of people have low vitamin D, in fact, I probably have low vitamin D and I don't have any symptoms'. Yes, well, lucky you for having an unproven, assymptomatic condition can we maybe focus on my actual real symptoms please (Is what I replied in my head).

Lots of love,

Dee xxx

Hi Audrey 

Yes thank you, I will print your blood levels off, if you don't mind and hopefully my GP will open her eyes, stranger things have happened!!! 


Thanks Dee, where do these endo`s get their bed side manner from? What a ridiculous thing to say!!

Take care 

Mel x

Feel free to do so, Mel. Heck, you can give your doctor my phone number too. I'd be glad to talk to him if it would help you!

Audrey

Hi Mel,
I also think you need to find a new endo or surgeon, your blood levels are not caused by having a Vitamin D deficiency.  I also started taking Vitamin D in July as my level was 42, it has now risen to 67 so still not replete.  I thought it would lower my PTH but it has gone back to high normal so clearly there is a problem as my calcium has also risen to 2.74.  I have been seen twice by a nice on the ball endo and this last appointment was another endo who appears to have labelled me FHH.  I am trying to speak/make contact with the first endo to discuss.  I have been promised a phone call but as yet am still waiting. My next appt is not until March sometime  and the luburo endo has not organised any further blood tests or monitoring as promised whilst I take D nor how long to take it for.  I am having GERD symptoms which I know is PHPT related but now am having that investigated.  I have most of your symptoms if not all, even the benign lymph nodes which I now think are reflux related.  I do think taking D has helped some of my anxiety and the muscle twitching has eased.  The only thing I can think off that has lowered my D is PHPT, especially as the whole of last summer I was outside recovering from my hip op and got plenty of sun.
Good luck and hugs Sue