Help needed with Parathyroid research

[Moggie]

Hi All,

I'm on yet another mission to solve my existing symptoms and need your help.

Just a quick bit of background as to why my thinking is taking me down this route.

Last May my vitD was 12.5 and after two weeks of 50,000iu supplements is went up to 154

ALP levels was 300 (80 - 260)

Parathyroid level was 6 (0.95 - 5.7)

Calcium levels were at top of range

After VitD treatment my parathyroid level came down, calcium went down slightly and didn't take much notice of what my ALP was doing (which I now know was foolish)

This April my vitD had dropped again to 43.9 and again went on 50,000iu supplements for a week but have not had a retest yet.

ALP levels are 316 (80 - 260)

Parathyroid level is 9.8 (0.95 - 5.7)

Calcium levels still top of range

I need to add here that after the first loading dose of VitD my GP told me to supplement 1,000iu daily to maintain levels but on doing this the heart palps I was suffering got worse so I stopped. My palps have been a lot better recently until I then took my second loading dose of VitD last month when they came back with a vengeance.

With the results above and the heart palps/missing beats issue I decided to do some research on the parathyroid and to my amazement found three things that really struck a cord with me. The first one being that having a parathyroid problem causes the electrical working of the heart to go haywire and secondly (which is the one that really started ringing alarm bells) was that taking any form of VitD will cause a strange reaction, namely an increase in palps/erratic heart activity (which I mentioned to my GP last week). The third finding was that liver tests come back wrong - hence the high ALP levels.

Have also learnt that when the parathyroid reading is high it means that the body is calling for more calcium (much the same as when the TSH level is high its calling for more thyroid hormone) and uses up all the bodies VitD reserves to make more calcium, once its used up almost all of your VitD it then takes the calcium from the bones - hence my high ALP levels. I did ask my GP where all that vitD had gone but she couldn't/wouldn't answer. It then deposits the calcium in all the wrong places like your kidney's (which leads to gall stones) and your heart.

I am due to see my endo on the 30th and, although he also has all the above results, he has said nothing about a possible parathyroid problem so I want to go armed with as much info and as many facts as I can to enable me to get a scan done so that this problem can be, either ruled out, or be treated.

Sorry for the long question - it takes some reading doesn't it.

Moggie x

[roslin]

Are you on alfacalcidol? I have read that the vit D levels do not affect serum calcium. It is the wrong Vit D. I probably have no functioning parathyroids but have very stable calcium on alfacalcidol. should know a lot more about it but a bit overwhelmed with the whole thing

hpth.org.uk/hpth.php?id=27

this website may be of help

Roslinxx

[Moggie in reply to roslin]

Hi Roslin,

Have just looked at the link you send and its very useful - thank you.

The difference between you and me is that your body can no longer regulate or make (not to sure which) your calcium where as, due to my parathyroid being over active my body is making to much calcium - well I think that how its working anyway.

Due to go home now but will look at the link you sent me more closely on Monday - thanks again.

Moggie x

[Moggie]

No I am not on alfacalcidol - what is it?

The VitD I was given to me by the hosp and was high dosage prescription VitD but it doesn't seem to matter how much VitD I am given my body uses it within months and then start taking the calcium from the bones.

I am well used to thyroid problems by now but this parathyroid thing is a whole new ball game to me, and your right it is overwhelming when you first start researching. I may even be barking up the wrong tree but need to get it sorted in my head to be able to tackle my endo about it.

Thanks for the link and taking the trouble to answer, I will have a look.

Moggie x

[roslin]

Alfacalcidol is the precursor to calcitriol which helps you absorb calcium from the digestive system. It doesn't sound like you would need any thing like that. The only thing I know is that when I had too much blood calcium I have been very thirsty. There is a section on hyperparathyroidism on the web sit.

Roslinxx

[Moggie in reply to roslin]

Thanks for the answer Roslin and sorry I haven't replied before but I haven't been very well.

The thirst you are talking about - does it come in spates or is it continuous. I have spates of being very thirsty and can stand at the sink drinking glass after glass of water and other times I hardly drink at all.

Thanks for being so helpful, its appreciated.

Moggie x

[helvella]

Suggest you have a l-ooooo-ng read here:

parathyroid.com/

Rod

[Moggie in reply to helvella]

Thanks Rod - sorry I haven't replied before but I caught some sort of flu bug and ended up off work and in bed since Saturday.

Will definitely have a good read.

Moggie x

[helvella in reply to Moggie]

No problem for me! Hope you are somewhat better now?

[Moggie in reply to helvella]

So so - have struggled into work today and am now sitting here wondering if I should not be back in bed. My duvet is calling.lol.

It just brings it home that us thyroid sufferers seem to be hit a lot harder, and seem to take a lot longer to recover from a bug than non thyroid sufferers.

Thanks again for your input and have already started reading the link you kindly posted for me.

Moggie x

[Jackie]

Hi Maggie, Calcium does effect vit D, calcium needs to be tested before treatment, 3 months both and then 6 to 12 months when stable, It can suddenly alter, If calcium high, above range the D must be stopped, no matter how low it is as otherwise dangerous. This happened to me after some years on D. ( I see a good endo)That PTH is not too bad but you must have a specific blood test, am for PTH, Calcium and vit D done together ( most GP`s do not realise that D is as important for a diagnosis)for a proper diagnosis, If all gone up , above range or 2 gone above range and D high for you ( normally D treatment for life), then a nuclear scan and CT of PTH, done at a large teaching hospital under a specialist radiologist and an ultra sound of the thyroid. Anything out then needs a biopsy. It does not mean any thing serious but only way to check. If not seeing a good endo, you should be.

i hope that helps.

Best wishes,

jackie

[Moggie in reply to Jackie]

Thanks Jackie,

I have been having all the blood tests you have mentioned, hence why I have possibly found a problem.

Yes I am under an endo (who seems very thorough) and am doing my research so that I can but "my case" and my theories to him and hopefully get a scan done.

Sorry for the delay in answering you but I have been down with a flu like bug that wiped me off of my feet for a few days.

Moggie x

[Jackie in reply to Moggie]

Hi Moggie,

I hope you are feeling better. Good that you have a good endo. I am sure she will send you for the nuclear scan ( large teaching hospital) and a CT scan of PTH, Just to warn you if anything found, it is normally very localised and a very good OP with good results, However, if found it does mean probably is not benign, ie needs removing!My PTH with the other bloods as I described is 14, I forget range, but well over double. Mine OK ,.so hopefully yours will be too.You also will need a routine ultra sound of thyroid, I have very enlargement and nodules. Had thyroid disease nearly 50 years. It should then be a biopsy, routine, often OK , but unfortunately I cannot even have a biopsy. Glad my PTH as OK as any op even a needle too dangerous for me ( not thyroid connected I had an email from someone ,worried about seeing a surgeon, but quite different now, they are really against any risks, it does not look good! Actually, I am joking they really do what is best for you now, not like years ago Hence none of them will give me life saving surgery that I need.. So, if endo suggests a surgeon, do go, they will keep you fully informed and right up to the day of the OP ,you can cancel.

I hope it goes well. Send me a PM and let me know how you get on.

Best wishes,

Jackie).

[Moggie in reply to Jackie]

Thanks Jackie.

Moggie x

[micksal]

I have just read your replies and although this was 10 months ago wondered how you have got on

I have just been diagnosed with Overactive parathyroid and am having 2 scans end of this month - my surgeon has already put me down to have surgery as he says parathyroid problems can ony be cured by having it removed - he has to find out which one it is first hopefully it is only one of them!!!

So my question is did you have surgery and have you removered. Many of parathyroid symptoms I have and getting horrid flu like symptoms are fairly regular in last year - I have never felt so unwell without actually knowing what was wrong with me - I was lucky I think in that I was diagnosed when they were looking for something else and my calcium levels were high in my blood!!

I think many people propably suffer and its never been diagnosed!

Hope to hear from you

[Moggie in reply to micksal]

Hi,

I ended up not having parathyroid problems but vitd problems which was pushing my parathyroid levels up.

It's unusual to find a consultant that is so on the ball as far as this is concerned as it can take months or years for doctors to act - what are your parathyroid, calcium and vitd levels?

There is a very good site re parathyroid issues but, unfortunately, the guy who runs it has not been well so its not taking any new members BUT if I can find the link you can still read all the very good info on it. He might be back up and running so joining might be an option but I gained some very good knowledge and help from this site.

parathyroid-forum.co.uk/

You might also want to ask a question on this site regarding this as I know there are a few very knowledgable members with parathyroid issues on here. If you make the heading something like "parathyroiud surgery" it will grab peoples attention.

Sorry I haven't been of much help but hopefully if you ask a question others will come in, who have more knowledge, and put forward some suggestions.

Moggie x

[micksal in reply to Moggie]

Thank you for replying so quick - My calcium levels were only 'slightly elevated' and I have been researching this a lot and I think, on that site you recommended, somewhere in the blog it says the symptoms of the parathyroid are more pronounced if your calcium levels are only slightly high rather than being very high and I tend to agree with this. My doctor told me this was found by accident!!!!! He said he wuld not have diagnosed me if I had gone to him with the symptoms I have. I am absolutely desperate to have this sorted as I have felt so unwell for at least 1 - 2 years and thought this was normal!!!!! I assume you are OK now????

Thanks

[bantam12 in reply to micksal]

Can I ask which hospital you are attending for your surgery.

[micksal in reply to bantam12]

it will be Ipswich

[Moggie in reply to micksal]

Snap - who are you under. I see an endo called Dr.Fowler, who I think is very good but I hear there is a Dr.Morris there as well who is also excellent.

Where do you live, in Ipswich or one of the surrounding villages.

Moggie x

[micksal in reply to Moggie]

OMG how uncanny - am under Craig Wilkinson not sure how good as only seen him once but he OK - Live in Eye - do you know it?? He was more concerned that my parathyroid would bring on osterperosis early as already have signs just had a major back op) and things haven't gone to plan!!! back to dr next tue and its only 3 weeks after op and still in excruiating pain in sciatic nerve - also suffer from cluster headaches and these have just started - can't believe my luck as very busy active person normally and have lost the will just lately - sorry to have a moan but you prob know how it is.

SAL x

[Moggie in reply to micksal]

Yep I know Eye as my aunt and uncle lived there for many years - he died a couple of years ago and she has just moved to Norwich. They lived in Oak Crescent - lovely place with a big green all the way around it - and I used to visit a couple of times a year.

Why are you under Ipswich hosp then and not Norwich - is Ipswich closer?

I also suffer with sciatic nerve trouble and really feel for you as it is sooo painful, I would rather have another baby than suffer that pain.

You really are stuggling at the moment arn't you but I think that's how things go - once one thing goes wrong it seems to start of a chain of events and you end up with two or three other things going wrong.

My MRI I had for my sciatic nerve trouble flagged up a huge ovarian cyst which has led me, after a year of hosp checks due to many things being out of kilter, to having to have both overies removed two weeks ago, so like you I am in recovery mode at the moment.

Your consultant really does seem to be on the ball but I have read that it is only the surgeons skill that will stop you having thyroid troubles afterwards as the op can actually damage the thyroid, so maybe ask the question when you see him next.

Dont appologise for moaning, we all do it from time to time on this site, that's one of the great things about being on here - people really understand what you are going through and will help/listen/advise as much as they can.

I hope you get some relief from your back troubles soon (just the thought of that pain makes me wince) as well as your parathyroid troubles.

Please let us know how you get on wont you and if you need another moan you know where we are.

Moggie x

[micksal in reply to Moggie]

Hi again - just to let you know had the ultra sound scan yesterday and lo and behold there it was the little FAT enlarged parathyroid!!!!!! I was so please which sounds really mad but at least I know now that I AM NOT GOING mad myself and that there was a reason fdor all the horrid symptoms have been getting - Nuclear scan next week to confirm and then hopefully they will get rid of the horris little thing!!!!

BACK is still bad - had injection last week and it came back with a vengeance but that was expected - AT LEAST surgeon is going to do a CAT scan to see whats going on (5 march) which is reall good as theres no way I can go back to work and its now 5 weeks since op!!!!

Hope you are recovering well from your op - I had a lot of trouble years ago as I had a cyst on my ovary and endrimetrosis and had one ovary removed and my womb - best thing ever had done!!!! So you should soon feel really well????

SAL xx

PS I know Oak cresecent very well and know many people there - were your aunt uncle there up until recentl or years ago???

[Moggie in reply to micksal]

Well done you for finally getting your answer, bet your pleased that you now know for definite what it is. So will you be having the op at Ipswich and if so have they given you a time scale? Lets hope its sooner rather than later and you can finally get back on your feet (back allowing of course)

My aunt and uncle lived there for over 40 years, my uncle died a couple of years ago and my aunt moved about 6 months ago to Norwich to be nearer her children.

My recovery is going well but still don't know when I will be back to work as I have had no follow up appt to sign me fit for work and my boss wont allow me back until that happens (health & safety & liability insurance nonsense) so will be phoning up on Monday to find out when my appt is likely to be.

If you feel up to it why don't you do a post on your experience, as it's all very useful info that can be passed on to our members.

Keep in touch wont you and let me know how things are going and what they decide to do.

Moggie x

[Moggie in reply to micksal]

Yes - thank you for asking and I really hope you find your answers and get this sorted sooner rather than later as you sound as thought you have had enough.

Good luck with your research, which is all we can do isn't in when we find ourselves in this sort of situation and please stay in touch and let us know how you are getting on.

Moggie x

[micksal]

Hi Moggie again

Sorry haven't replied sooner

Tried to answer the last e mail we sent each other and I mucked it up or couldnt do it!!

Had my parathyroid scan last week and have the results - he has said that this hasnt shown it up yet the ultra sound has!! - He has been very non commital in the letter but surgery has been mentioned - I am due to see him on 29 May - unfortunately this is the earliest they can do (I spoke to the secretary) and he said in letter he will discuss the options with me then!! Hence at least another 2 months I wuld say until surgery - arghhhh!!!! BUT at the moment its the back thats the problem - had cat scan on that and am waiting for result - the pain in the buttock ging right down underneath is awful if I move wrong!!!!!! OMG would do anything to get rid of this bloody pain!!!!

How are you anyway?? Back to work yet???

I will do something on here but not sure how t do it?

Sal xx

[Moggie]

Hi Sal,

Nice to hear from you again, although I am so sorry you are no further forward with either you back or your parathyroid issues.

I really do feel for you over the back - I think I would rather have last stage labour pains that the awful pain shooting through your back, down your leg or where ever it deems fit to attack. Any further treatment pending for this?

I would suggest you try and do as much research as you can before the appt as he doesn't seem very on the ball, or helpful.

What do you mean your not sure how to do something on here - do you mean a post? There are a few people on here with parathyroid problems so if you do manage to do a post that could be very useful. If you want me to guide you through it let me know.

Moggie x

[bantam12 in reply to Moggie]

Hi Sal

I would look into finding another parathyroid surgeon if your current one is dithering about.

I saw my surgeon last week and i asked what he will do if nothing shows on the scans, answer was " I just have to go in and search" which is more difficult for him and me but it has to be done, if there is an adenoma there, which you have shown on ultrasound then it has to be removed. There is no other option as pth disease will not go away, cannot be cured and will only get worse. Yes you can take meds to control the calcium but that is not going to get rid of the problem.

I haven't had the scans yet but I am booked in for surgery in about 12 weeks.

If you are anywhere near Bristol I can recommend this surgeon.