Hi all,ive been having many symptoms and havnt got to the bottom of what could be whats acutally wrong with me, ive had my hemocromotois checked low chance of it being that then gp suggested parathormone testing as a last resort, my levels came back as 11.6 and have now spoken again and aparently its only slighty raised and not a concern? The next suggestion is Vit D deficiency check to see if its possibly this?? Am i right to go along with the only slightly raised or ask for a second opinion?? To be honest im utterly fed up of feeling so unwell. xx
What are your symptoms Jenny?
hi shelagh, i feel like my list is endless,
lack of energy
brain fog forgefullness
needing to nap
not sleeping well
hair falling out
very low sex drive
anxiety/ rapid heartbeat
iritability ( my partner and i have noticed this significantlly
acid reflux constant heartburn
pain in bones like a dull ache
sorry to go on xx
Hi Jenny - are the 11.6 levels you mention, calcium levels?
Jenny, you may have hyperparathyroidism. Your GP won't agree but you need to have your ionised calcium level checked (this is the active form of calcium in the blood). If this is outside the reference range then you almost certainly have hyperparathyroidism. Unfortunately you can't get this check done on the NHS. You have to go to a private clinic which will charge you (£130 when I've had it done for my wife). They will give you a report which shows whether you are in or out of the range. I read recently on the facebook page 'hyperparathyroidaction4change' that in Denmark they only carry out ionised blood tests. The serum adjusted calcium levels that are performed by the NHS can be very innacurate. Research reports from Canada and Ausralia confirm this. Keep perservering.
Alan
Hi Alan, I'm intersted in your reply to Jenny. I was diagnosed with hyperparathyroidism some time ago - discovered when a raised calcium level was found after routine blood tests. This was done on the NHS but I didn't realise there were different ways of testing such as mentioned in your reply to Jenny. I am now at a stage where I have seen an endocrinologist and have just had a Sestamibi scan and awaiting an ultrasound scan next week. All this with a view to surgery in the near future. Could you tell me more about the ionised calcium level and the serum adjusted calcium - which is presumably what I had done as it was on the NHS?
Thank you Alan i dont mind paying as i suggested to my GP ill go private anyway as i really feel down and want to get to the bottom of this. shes testing my vit d levels this week/ next will this resolve anything or show more answers?? Thank you for your reply Jen x
parathrmone level x
Jenny I can describe my own situation to you if it will be of any use. About three years ago, after routine blood tests, it was shown that my calcium level was raised. After further testing - including a 24 hour urine sample test - I was diagnosed as having Primary Hyperparathyroidism. My GP at the time referred my case to the endocrinology department at the local hospital but was told that as the calcium level was only slightly raised there was no need to see me and she should monitor my situation on a regular basis. This she did via blood tests and bone density scan. At that time I was living in East Anglia but last year i moved house and came to live on the South Coast. When my new GP received my notes she immediately did further blood tests and referred me straightaway to an endocrinologist, who I have now seen twice, and who sent me for another bone density scan despite the fact that I had had one done immediately before I moved. Previously I had only had my lower back and hip scanned but the endocrinologist said that to determine the the measurement in relation to the hyperparathyroidism I needed to also have my forearm scanned. This was duly done and when I saw him again he said surgery would be necessary and in the meantime he would send me for both a Sestamibi scan and an ultrasound scan to determine the exact location of the malfunctioning parathyroid in readiness for the operation. At the same time he also put me on a course of vitamin D tablets. I pass on all this information because I am experiencing many of the symptoms you list. I send best wishes and hope you soon find satisfaction in your own case.
Hi Karole. You can find out about the science behind this on Wiki. Key in ionised calcium metabolism and scroll down to kidneys. For empirical evidence try this site:
http://press.endocrine.org/doi/full/10.1210/jc.2012-1429
Sestamibi scans don't always show up bad glands. The only certainty is a blood test. Have you looked at Dr Norman's website in Florida?
Alan
Alan
Thank you so much karole its so hard to explain my frustration and all i feel like i do i moan that i dont feel right. when my gp phoned the other day and said my parathomone is only slightly raised i cried as im sure this is whats causing my extensive list of ailments. do you think ill get more answers from my vit d levels being checked or am i clutching at straws??? xx
I do sympathise with you Jenny - I really sense your frustration. I am not a medic but would think it might be worth getting your vitamin D level checked. Has your GP mentioned hyperparathyroidism to you? As i said, this is what I have been diagnosed with and I can identify with very many of your symptoms.
she mentioned "moans Groans some saying like that??? and the possibility of hyperparathroidism but as my parathormone is only a bit high the vid d also needs doing,im not even sure on ranges?? xx
As I mentioned in my earlier more lengthy reply, when I was first diagnosed with hyperparathyroidism the endocrinology dept told my GP to just monitor me, as my level was only slightly raised. However, as I also said, when I transferred to a different part of the country I was treated quite differently. Maybe you ask your GP to refer you to an endocrinologist?
yeah im thinking i may, thank you so much for your advice and help x
You're welcome Jenny. Good luck.
Hi Jenny. If you have PTH your Vit D will show a low score. Your GP will then put you on a 3 month dose of daily Vit D3 pills. This will push your calcium levels up and make you feel more ill. There's nothing you can do about this because the system says you must do it before you can have an operation. It happened with my wife on 3 separate occassions. If your GP doesn't do this it's because she'll have recommended that you see an endocrinologist. The endocrinologist will probably mention some rubish like secondary hyperparathyroidism and put you on the Vit D routine. There's nothing you can do about it. You are dealing with Gods and they can't be questioned. Eventually you'll get an operation and hopefully be cured. Sorry to be so downbeat but this is the way of the NHS. My wife's been through this. Persevere though and you will get cured.
Best wishes. Alan.
Thank you Alan i feel bad questioning my GP never mind above but i know my body and thats why im not giving up. When you say will feel worse is it the same symtoms just more exagerated? x
That's how it was with my wife.
Hello Alan - many thanks for all your helpful advice. Have now watched Dr Norman performing the parathyroid op and was very impressed - rather wish I could get over there to see him. Where did your wife have her operation done? Re Vit D in your reply to Jenny - I was put Cholecalciferol 2000IU tablets about a month ago by the endocrinologist and have been taking them daily since - until today. I had queried being put on Vit D knowing I already had a raised calcium level and also after reading the information leaflet which stated you definitely shouldn't take them if you had been told you had a raised calcium level. But I was told I should still go ahead. Then after reading all the info on this site and knowing my symptoms had been much worse since taking the tablets I decided enough was enough and so I missed taking one today. However, you say it is necessary to raise the calcium level further prior to surgery - can you tell me why this is?
Karole