Fathers calcium and parathyroid labs

First topic message reminder :

I decided to ask my parents to have their calcium and parathyroid checked as I was concerned about my dad as he complain of the same symptoms and has done for years.  He is on blood pressure meds and has bad joints fatigue and all of the symptoms. 

I found this very interesting
these are my mum's results

Calcium 2.34 
parathyroid 2.6

These are my dad's

Calcium 2.65
parathyroid 3.2 

He has been asked to go back to his gp to discuss this and his gp is aware of my situation.  
His parathyroid hormone seems innapropriately high for the cacalcium level just like mine.

Now I'm worried what to do and if to inform my endo. .. or will this put a spanner in the works with my case or will this info help my case.

I'm thinking about an isolated famillial hyperparathyroidism problem.  

I'm stuck on what to do for the best. ... and if this will stop my process for surgery as I have an appointment with the surgeon on the 27th of Jan.

Have I opened a whole can of worms or will this help my case for surgery better.

In the mean time my dad isn't keen on persuing hpt problem as he brushes things under the carpet but I think this may have been his problem for a long time.


Any recommendations or advice in what to do would be great.

Happy new year to everyone
lots of love Rachel xx

Thanks for your input Anna, this has caused a great deal of stress over the new year. My mum picked up his results today and I had a look. There is a message written saying to conaider a refferal to an endo be case of the unsupressed pt level. It also has written suggestive of primary hyperparathyroidism.  

I decided it's all to coincidental and phoned my endo about an hour ago and luckily she was there to speak to. She has agreed and asked me to request that he has his levels retested and them sent to her. 

She wants these results in before my next appointment on the 27th with the surgeon because like I suspected she may need to postpone my appointment with him.  Which was why initially I was reluctant to tell my endo this info. 

Unfortunately I am worried that they will not operate on me now because it maybe a 4 gland problem and then surgery will leave me in a worse situation.  But I don't want to be stuck on cinacalcet forever which I'm worried they will do.  

As for my dad he hasn't reacted very well.... and shows his worries in anger. 

Im worried I have messed this all up for myself and me things worse. 

Rachel xx

Rachel

I am so sorry - but I doubt very much that you have messed things up for yourself or your dad.   His anger is just a symptom of his fear which he cant cope with.   The unknown affects us all differently and you have done the right thing.

Your surgeon and endo will have your best interests in their minds and the fact that doctors suspect primary hpth in your dad's case might even make your operation all the more likely, so dont give up hope just yet.   4 gland disease is quite, quite rare but they should all be checked during the removal of any para and further investigations will need to take place after surgery if the medical team suspect anything else could be amiss.

Anna

Thanks Anna,  

Somethings telling me this is going to halt everything for me but maybe I did the right thing. 

I'm worried now that they may not think surgery is in my best interests if 3 and a half glands are removed there is a risk of being hypo.  

My endo is waiting for some more labs from my dad that he is having next Tuesday.  Based on that she will then decide if she will keep or change my appointment with the surgeon on the 27th.... 
why should this make any difference as surely if it's hereditary then I still need the op. 

This is where I start to worry that I will be stuck like this forever. 

 Does Familial hyperparathyroidism have different management guidelines. 

My endo said my dad's problem is not FHH as his last calcium was 2.5 in 2012 she said if it was FHH then it would have been elevated back then.  This all seems too much of a conincidence that his health has deteriorated over that last year's as his calcium has risen. 

My mistake Anna but I can't remember if you have a familial case or not ? 

Thanks Rachel xx

Hi Rachel

This part of Anna's reply is really important, I feel:

 "Information about your dad's problems should not at this stage prevent or delay your surgery, but the surgeon will probably want to check all 4 glands (which I like to think they would do anyway)."

I was told by the female doctor working alongside FP that he "always does a 4-gland examination" and I was hugely reassured by this, as both his male registrars had told me that during the surgery they would measure the PTH after removing the single adenoma that showed up on ultrasound and if the PTH level had fallen by at least 50% then I "was cured". It sounded to me from this as if they were not going to look at the two glands on the opposite side - and if they had not done so (10 minutes before the op I voiced my request for a 4-gland examination no matter what the PTH measured after removal of the first adenoma) then the two adenoma sitting there would have been missed.

What I am trying to say is that it would be best if you could be certain before surgery that your surgeon will examine all four glands. Perhaps you could ask your endo to ask him.

Something good comes out of everything, I believe, and the way events have moved on since your original post is (despite what I said in my post earlier) the way things should be going. Your endo is really supportive and you get on well with her, and I think you did absolutely the right thing to alert her to the situation with your Dad. Hopefully she will now pick up the reins, so to speak, and move both your case and your Dad's situation forward along the right lines.

Try not to worry, Rachel. You have other options if this pathway you are on does not lead where you want it to.

Keep us posted on developments - Lots of Love and Hugs from Tigerlily xxxx

Thanks tigerlily

I was hoping it wouldn't delay anything but unfortunately I think it will if my dad's next labs come back again indicative of a pt problem. Again on the phone my endo stated be case of my age there maybe a link. 

Even if he decide's not to pursue it from 2 lab tests she my endo may get more of a picture. 

I'm trying to figure out what testing they would need next and what would prevent me from surgery now.... maybe the fear of hypoparathyroidism. 

I'm wondering if it is in the family if it is possible to present itself and different stages and ages in families. 
In some ways I'm glad I've told her I feel relieved as with anything I struggle to withold info from people and always thinks there could be consequences

I think know I've caused arguments between my parents be case of all of this. And I feel terrible. 

My endo also asked me on the phone today if I feel okay.... she thinks I'm fine and should be fine as I'm on the cinacalcet but it may lower my calcium but it won't cure my problem.  That's my fear now.... I will be kept on that forever without surgery. 

Surely that caby happen as well as the cost issues of cinacalcet at over 100 pounds a pack

Safe to say today I've shed some tears

Lots of love Rachel xxx

Just a little update about someverything latest labs from my dad's bloods on Tuesday. 

Calcium 2.62
pth 3.0

From this I'm still going with my original thoughts that I have inherited this.

I know my dad's suffering bu he seems to cope so much better that I do and not feel as symptomatic. I'm wondering if this is because he's just more endeering than me and copes better. Or if it's hereditary it may have in my unmedical terms changed form so to speak and presented at an earlier stage in me. 
I'm wondering if this is true what this means for me

Tigerlily I've been following your updates and I am facinated to know what's going on with your situation

Many thanks Rachel xx

Hi Rachel

Good to hear your update on your Dad - and thanks for caring!

Medics would say your Dad's readings are "within range", even if the calcium is beyond the top of the lab range. I still feel that your Dad's PTH should be a bit lower, even though it's not very high in its range. Maybe he just got measured on a day when his possibly fluctuating PTH wasn't very high.

I think you are right in your original thoughts, and also right that it has appeared at an earlier stage in you.
I think I inherited it from my Dad and he was further along the line with it and it caused his myelofibrosis.

FP wasn't very forthcoming on whether I had the isolated familial or hereditary version of PHPT. He seemed to think that I should go back to my endo to discuss that. He has been happy to see me for the surgery, but not to investigate the possibility of MEN1 or other things. As 3 of my glands were hyperplasic, I think the possibility of MEN1 or whatever is present, especially as I have already had a melanoma and have other skin issues, lumps/bumps etc. I'll keep you posted!

Will you still be seeing your endo and the surgeon? Hope so.

Love from Tigerlily xxxx

Thanks tigerlily

I see what you mean.... His labs are similar to mine although my calcium has been muchecked higher and parathyroid higher but my parathyroid has also been lower.  Like you said maybe he has his bloodd when his pt had gone down a little as his calcium has risen so maybe there was an increase in pt to cause this. 

It's all so complicated just trying to get my head around it.  My endo wasn't me to send here these latest results along with his others before X mas so she can have a look herself and compare then. I think if she agrees that he has a problem she will see me in her own to discuss this with me and other possibilities about a familial case to then present to the surgeon at another date. As I understand they need all this info and as my dad hasn't had a confirmed diagnosis yet. 
I'm hoping she will just let me go to the joint appointment with this new info but I doubt it will be that straightforward.  

Yes keep me posted! 

Rachel xx

Just another question haha!
Do you think parathyroid levels can correlate to how long the disease has been present. Just thinking as my pt has never been that elevated 

Rachel xxx

Yes, Rachel, I have a feeling that they do. I think I had my 3 enlarged glands for more than 10 years, and my PTH reached a max of 13 with an elevated associated serum calcium (max 2.73, but not with a PTH of 13 - it was around 7-8 with that serum calcium level).

But Audrey might have a different take on this. She had 2 adenoma removed and her serum calcium and PT were never far out of the normal range, although they were not in the correct relationship (i.e. inverse relationship: where if calcium is raised, and the ssytem is working normally, then PTH should be very low in its own range).

In your shoes, I would now give all the information to whomever requests it. It is their responsibility to work out what is happening with you and your Dad. However well-read we are on the forum, it is the medics' job to sort it out. I fear MEN1 for myself, but I'm going to lay it at the door of my endo and let them do the work. There is no cure for MEN1, just regular monitoring, so I'll make sure I'm monitored and let them tell me what they think (with suitable prompts from me, of course!!).

Let us know how things progress for you.

Love from Tigerlily xxxx

Thanks for the info tigerlily

I'm starting to doubt everything for some reason. This hole issue of my pt never being that high is making me question things...

When I posted my dad's labs on the first set I wrote down the wrong calcium and not corrected so will post it again. 

23rd Dec 
calcium corrected 2.58
pt hormone 3.2

6th Jan 
calcium corrected 2.62
pt hormone 3.0

Sometimes I struggle to get my head around the effect of pt on calcium ect. ...
so here the pt hormone has gone down little since the first test  and calcium has gone up. 

With regards to the MEN issues I hope your endo can investigate it further and keep a close eye on this !


Lots of love Rachel x

Thanks, Rachel - I'm just taking a bit of rest from it all, before setting out on the MEN1 thing.

These corrected calcium values are still quite high in the range, and it is correct that the PTH should fall if the calcium rises. But with calcium levels so high (uncorrected or corrected) I think the PTH should be almost undetectable (but I'm no medical expert).

Try not to worry too much about it, Rachel, until you've seen your endo at the end of the month - but I know how difficult it is not to worry!

Love from Tigerlily xxxx

Hi tigerlily

I had my blood test results today. I was hoping things were stable but I haven't been feeling to greathe lately. 
My calcium and gone back up to 2.63 and parathyroid has risen again. I'm on the lowest dose of cinacalcet and think it needs to be doubled. 
I very much doubt I will be seeing the surgeon soon as my endo said he needs to see its stable. 
I'm worried now that they will think it's not a pt problem as things have gone up again despite the cinacalcet. I just don't think it's strong enough to keep my parathyroids at bay.

I've been pretty upset as I thought my journey was heading towards ending. But I don't think so any time soon.
I'm a bit confused as to what's going on and I think they will up my dosage on cinacalcet.  I think my pt hormone needs to be near 0 to stop my calcium rising and the cinacalcet isn't strong enough to oppose it.

Thanks for replying, I'm feeling really down about everything and don't want to continue taking cinacalcet but I guess I don't have much choice. 

I've send across my dad's labs and his gp thinks something is up with his pts too. My endo said she thinks there could be when I told her his labs before X mas.

I'm trying to think of this not as a set back but unfortunately I can't convince myself that it's not

I hope your doing okay. 

Many thanks Rachel xx

Maybe it's not a pt problem although everything else has been ruled out and my thyroid is stable. 

Feel like giving up  now and just accepting this is how I will feel forever. 

Rachel xx

Rachel have you had a thyroid check recently ? It's not that long since you stopped the thyroxine is it ? may be too soon to say your thyroid is stable just yet as you are possibly still adjusting to not taking it and quite possibly heading hypo again.

If I remember rightly your first tests were showing you as definitely hypo so the endo stopping your thyroxine seems a somewhat strange decision.

Nelly

Hi Nelly, 

I had my thyroid checked and my free t4 is back in range but tsh was supressed. I had to admit to my endo that I did a silly thing... I was feeling so rotten last week I took some thyroxine out of desperation as I thought my problems were cased by my thyroid again.  But I'm Not hypo any more and my t4 was 20. 
I was struggling with going to work I felt so terrible I just took it too see if it eased my symptoms but it didn't and now i look a fool for taking it but I was so desperate.  To he honest I don't know what's going on and if the cinacalcet is making me feel rough or its the calcium. Looks like I will be seeing my endo again and not the surgeon
hope your doing okay Nelly

Rachel xx

Rachel taking the odd thyroxine tablet will do absolutely nothing as it takes at least 4-6 weeks to build up and have any effect. You really need a T3 reading to know if you have a problem, I am guessing they haven't done that. What is your tsh ?

My tsh was 2.0 
Free T4 was 20.2
And they did my t3 was 6.8

Phew okay I'm glad I admitted it though I was just desperate last week and thought it was my thyroid function.  

I'm not sure what's going on with myself atm 

Thanka for your help

TSH of 2 is not suppressed it is actually heading in the wrong direction towards hypo end, we would normally want a TSH around 1. A suppressed TSH would be a 0.0 reading below the range. Your TSH is telling your thyroid to produce more T4 but you already have high levels so something is not right.

Did you take the thyroxine before the test ? because your levels are odd, your T4 and T3 are right at the top of the range so your TSH should be 1 or below. There are a couple of possibilities, one is a pituitary problem where it isn't sensing the high thyroid hormones and switching off, or an absorption problem caused by vit and mineral deficiencies.

With your T3 at 6.8 you are possibly feeling a bit hyper, easily confused with hypo symptoms as they are very similar.

Of course if there is a typo and your TSH is 0.02 then your T4 and T3 make sense but they are still a bit high so have a look at hyper symptoms !

Nelly with input from Edwin as well.

Thanks for looking at all those for me.  I made a mistake and my tsh was 0.2 sorry for the confusion. Does that makevery more sense because I am clueless when it comes to thyroid labs!

Sorry again for the confusion
Rachel

Thank you for your info it makes sense now. 
I get unbelievably confused with this.
and I don't know what's going on with my calcium. I see no end to this ! 

Really appreciate your help 
Rachel

0.2 isn't really suppressed but it is too low, the results make more sense now but you might well be having hyper symptoms with that TSH and T3.

You need to keep a watch on your thyroid levels in case they keep heading towards hyper. You can swing from hypo to hyper with the Hashimoto form of thyroid disease, you would have high antibodies with that, don't know if you have had these tested.

Nelly

Thanks Nelly

I have had my anti bodies tested but I was questioning hashimotos as throughout my life I have lost and gained waIghtfield significantly and felt like I have been through hypo and hyper stages but I have no evidence to support this. Again could that affect calcium levels ? 

Rachel

Where your antibodies raised ? Hashi can be difficult to diagnose as there may be long gaps in between changes so tests appear normal. 

Apparently Graves ( autoimmune hyper) can increase calcium levels and cause osteoporosis if untreated but Graves (which I have ) is different to Hashi.

Trying understand how all the hormones work together  is a minefield and as we all know the doctors don't get it either !!! Not much hope for us then 

Nelly

Thanks Nelly,

My anti bodies were normal. But I'm sure they can also fluctuate.

Oh dear not much hope like you said. I'm not sure what to make of this. 
I'm not sure why my calcium has gone up again. My dad's gp seems to think he could have a pt problem. 

I'm still no closer to know whata going on and I'm worried I will always feel like this  
Rachel x