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Fathers calcium and parathyroid labs

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Fathers calcium and parathyroid labs

Post by rach260190 on Wed Dec 31, 2014 7:33 pm

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

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Re: Fathers calcium and parathyroid labs

Post by Little Audrey on Thu Jan 01, 2015 6:14 pm

Hi Rachel,

You mom's levels look great, but your dad's are a bit iffy. His calcium should not be that high regardless of what his PTH is. That is, it should not repeatedly be that high. I am comparing his levels to my own pre-op levels. I always have to convert the UK numbers to US numbers so I can better relate. Your dad's calcium in US numbers is 10.6. His PTH in US numbers is 30.2. I had a pre-op calcium of 10.6. My PTH with that calcium level was 49.7. I also had a calcium of 10.7 with a PTH of 65.7. I had a calcium of 10.5 with PTH of 55.9. As you can see my PTH levels were a little higher than your dad's, but if his calcium would consistently be higher than 10.1, unless his PTH would be very low, I would say there is a problem.

I would hope your doctor would have enough sense to realize it is possible for more than 1 family member to have PHPT, and that it does not have to be FHH. I would hope he/she would have enough sense to search for tumors for starters and then take it from there.

I understand your concern regarding whether or not to mention your dad's levels to your doctor. I can see why you might think this could hinder your own diagnosis of PHPT. I am going to make a suggestion, but I have no idea if it's the best possible solution. If it were my father, I would be torn too. If your dad is not suffering badly or too badly from the symptoms, and he's not too keen on pursuing it all anyway, and since your appointment is only a few weeks away, I think I might not bring it up at this particular appointment. You might wait until you are diagnosed and THEN mention your dad's levels. Although, if it takes you longer than a couple of months to get diagnosed, you certainly would not want your dad dealing with the ill effects of the disease for much longer, even if he is not dealing with any severe symptoms that he is aware of. I do not envy you here. This is tough!

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 6:24 pm

Hi Audrey, 

I'm really greatful for your advice and reply. 

I agree with you, would you consider telling them the info if you were in my shoes as I have had a diagnosis of phpt already. Part of me thinks it may help my case however maybe confuse it.

My next appointment is with a surgeon to re consider for surgery. 

I am worried for my dad I know he's not well but he is stubborn and very strong willed. 
He climbs the stairs on all 4s because of his joint pain and aches he can't walk for longer than 5 minutes without pain and is in bed by 7pm. 

Gosh this is a hard one I really don't know what to do! 

I've heard it can manifest and present itself at any age. I've seen his deterioration over ththe last few years. 

Rachel xxx

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Re: Fathers calcium and parathyroid labs

Post by Little Audrey on Thu Jan 01, 2015 6:28 pm

Well, Rachel, if you already have a diagnosis (and I am sorry if you already posted this, and I just can't remember!), and your dad is suffering so badly, you might want to go ahead and mention it at your appointment. It sounds like he is in need of some serious help!

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 6:33 pm

Thanks Audrey!  

My mind is just running away with me.... somehow I'm Scared it will take my case back to the begging more testing and longer until I have surgery Sad

My dad is going to his gp next Monday as I have written everything down and my mum is going with him as he has unfortunately accepted how he feels and adapted to that way of life. 


My endo asked me about my family history but it never clicked... its all making sense now she has his calcium level of 2.5 but that was from 2012 when they ruled out anything in the family. 

I really appreciate your advice Audrey I'm well and truely stuck ! 

Rachel

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 6:52 pm

Unfortunately we also have different gps as we live in different areas. .. I am in Bristol my mum and dad are in Devon. 
I have no idea what my endo will make of this new info if I show her. Maybe it's worth telling her before my next appointment with her and the surgeon.

I'm hoping  now my dad's gp is aware of my.diagnosis he won't disregard my dad's symptoms and calcium levels although it was hard enough to get the gp too agree to test his calcium and pt at the same time ! 

Rachel xxx

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Re: Fathers calcium and parathyroid labs

Post by Tigerlily on Thu Jan 01, 2015 7:03 pm

Hi Rachel - and Happy New Year to you.

I saw your post earlier today and have been thinking about it this fternoon before replying. You are right that your Dad's PTH is inappropriately unsupressed (as FP would put it) for the high level of calcium. I know the calcium  may be only just out of the top of the range, but it is a high calcium level for an older person. Calcium levels normally fall as we age - hence everyone talking about taking extra calcium to prevent osteoporosis, etc.

I think I would hold off from expressing a connection with your own case to your endo or GP, until after your next appointment. This would enable them to make up their own minds, which is always a good idea. All you need to say (if indeed you have to say anything) is "out of interest, I asked my parents to have their Ca and PTH tested" and you don't have to explain any further at this point in time.

Like your Dad, I had a calcium level of 2.56 way back in 2005 and the GP never even pointed it out. I think if my Dad had ever had his calcium and PTH tested they would have come back indicative of parathyroid disease. He was diagnosed with myelofibrosis just before he died in his late 70's, and I have found links recently that indicate that parathyroid disease over a long period of time can cause myelofibrosis, so I could not be more pleased that my own 3 uninvited guest PTH adenoma have now been removed.

The wonderful thing about your situation is that you may be able to help your Dad to be more comfortable in his later years if it turns out that he has pHPT as well. Knowing your age, I don't think he can be that old, can he? Not even as old as me at 62? So some years of extra zestful life will be a really great bonus for him if he ends up having an op as well as you! (We'll even be able to invite him for a bit of Ritz-table-dancing, in that case!)

I would allow the GP to sort things out for your father for the moment - with help from the guidelines you have written out for your Mum - and just hang on in there and get your next appointment under your belt. Just tread water for now. Your GP may call you in to see him after he has seen your Dad, but just go with the flow for the mo. That would be my advice.

Movement forward should really come from your Dad's GP, your endo or from the surgeon. After you have had your 27th appointment you will be able to see things more clearly for both yourself and your Dad, going forward, as they say.

Meantime, keep us posted on any further developments/worries etc., and we'll all try to help further.

Lots of Love from Tigerlily xxxx

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 7:24 pm

Hi tigerlily, 

Happy new year to you too! I hope your recovering well

Thanks for your advice.  It's a tricky one!


My endo has my dads calcium of 2.5 from 2012 as she asked for their calcium at the start of my diagnosis. Annoyingly my dad's gp didn't think it was nesecassry for an up to date one!!! And give me the 2012 level of 2.5 ! Which I am really annoyed about as something more recent has been missed.
It was only since my diagnosis he agreed even to test calcium again even then it was a battle. 

It's tricky as we live in different regions and different gps.  
Sor my dad's gp is aware of my situation but not the other way around at my end. 
Interestingly the lab my dad's gp uses has a lower threshold for calcium at 2.10 to 2.55

I feel I am so close to maybe getting the go ahead with surgery that I'm scared any info overload will get in the way. 

My brain feels like it's going to explode with all this ! Haha

Rachel xxx

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 7:39 pm

I forgot to say Tigerlily he's in his 60s

But so is my mum and she's full of life my poor dad has joint pain in his hips and knees. He complaines exactly of how I feel. He gets what I call the weakness where I feel all weak and floppy and woozy almost drunk. 

It's fainting to know about your father,  I feel it may also be further down the line in my family but unfortunately generations back I doubt calcium was a thought of issue 


Rachel xxx

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Re: Fathers calcium and parathyroid labs

Post by Tigerlily on Thu Jan 01, 2015 7:45 pm

Yes, I agree, Rachel. Hang on in there and get yourself sorted first if you can. If you take up your Dad's case at this point in time, it might extend things for you.

I know it might sound a little mean of me, but I'm sure your Dad would want you sorted first, and then him - and how great would it be for him to have much better health to look forward to himself, if it turns out that he has an adenoma!

Try and coast now until the end of the month and see what that consult brings - good things for you, I hope!

I know how difficult it is not to let these thoughts prey on your mind - another PTH symptom, I think!

Love from Tigerlily xxxx

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Re: Fathers calcium and parathyroid labs

Post by Tigerlily on Thu Jan 01, 2015 7:48 pm

P.S. Mr Tigerlily is almost 73 and wants me to tell you that the only time he finds himself on all 4's is when he has decided that he's had enough to drink!!

TL xxxx

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 8:00 pm

Thanks Tigerlily! 

Oh gosh that made me chuckle hahaha !!!! 

Yes I witnessed my dad on all fours climbing the strairs last night because of his joints it's not the first time either and this was without any drink! 
Has very good at being secretive about these things too and doesn't like talking about it

I'm worried regarding surgery. .. If it did turn out to be familial maybe it would best be made known before surgery as there could be 4 glands involved. 
I understand what you mean by getting myself sorted as my dad... I hate to say it but has almost accepted this is normal for him to feel this and he has adapted his life to fit around his symptoms which makes me really sad... he's almost accepted this is how he will feel forever

Rachel xx

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Re: Fathers calcium and parathyroid labs

Post by pilipala on Thu Jan 01, 2015 9:49 pm

I can definitely understand your dilema. I too would be very tempted to not mention it unless asked, although I imagine if your surgeon is any good at all he should ask about your family history. If it doesn't come up now it might suddenly when you're filling in further forms before surgery and the last thing you want is to suddenly get a last minute delay.

I think we're all keen to avoid adding months to your wait from FHH testing. However, statistically speaking it's actually more likely that it's another genetic cause such as MEN1. As Anna has previously pointed out two thirds of patients with MEN1 will go on to develop pHPT. Since you are in your twenties this really should be the doctors first thought. 

If the doctors do bring up FHH I'd point out that both you and your Dad have very severe symptoms which have worsened in the last few years. That is indicative of a benign adenoma.

I don't want you to worry about MEN1, I'm sure Anna can help answer questions about it. Of course it is possible that your Dad's condition is unrelated to yours. Just one of those things. It's very good he's going to the doctor though and I really hope he can get some answers and swift treatment.

Thinking of you,

Love
Dee
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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 10:00 pm

Hi Dee

Many thanks for your info Smile

I can see what your saying it's a tough one! 
If it is familial I would want the surgeon to know as it could involve 4 glands maybe ? Or an adonema

I have had FHH ruled out but my dad if he decided to persue this would have to go through the testing. 
What's worrying me is that they have asked about my parents history but it was missed in my dad's case because of his stubborn gp giving an old calcium level to me to give to my endo. 

Like you said more testing could take months and I rrally don't want to keep on waiting Sad 

With regards to FHH if it has been ruled out for me surely they won't dig that back up if I tell them about my dad? 

Again with the MEN issues I am aware that it could be a possibility.  I'm not really sure where to go with this and I spend hours awake a night wondering what to do. 

I really appreciate your input 

Rachel xxx

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Re: Fathers calcium and parathyroid labs

Post by pilipala on Thu Jan 01, 2015 10:15 pm

That's really good if they've said they've already ruled out FHH in your case. Remind them if they start talking about it again.

If they start talking about MEN1 I'd push even harder for priority scans/surgery pointing out an adenoma is only going to get bigger and cause more problems the longer they leave it. There is no need to wait for testing for MEN1. A surgical intervention for pHPT only lends weight to the diagnosis, it shouldn't be delayed waiting for one.

Keep stressing how your symptoms affect your quality of life, particularly sleep/work, just to keep the pressure on them for surgery sooner rather than later. Write this down if you're worried you won't be able to articulate everything during the appointment.

I know it's hard to keep pushing hard when you're at your weakest, but keep going, you will get there.

Love
Dee
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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 10:25 pm

Thanks Dee!  

I've had my scans but they were negative. I think this also has been holding me back that's why part of me wants too yell them about my dad and use it as more proof.  But I could see it all backfiring for some reason. 

Gosh I'm confused.... to tell or not to tell. 

I know when my dad sees his gp he will most likely fob him off with the normal parathyroid hormone range... which I think is innapropriately normal. And my dad is very good at just getting on with things and not perusing problems if it's not straight forward.

With regards to MEN I know there are a few different types. But some familial cases don't end up as MEN syndromes and cause problems in other endocrine areas but unfortunately in my case there could be something going on as I have thyroid issues.


I keep pushing but I have so many questions I would love to be answered ... I honestly don't think I have ever felt right or certainly not for a long long time

Rachel xx

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Re: Fathers calcium and parathyroid labs

Post by Little Audrey on Thu Jan 01, 2015 10:39 pm

Well, I'm sorry, Rachel, I think I was a bit confused here.   I'll just blame that on all of the goop in my head from this darned cold!  

I was thinking your dad shared the same doctor as you, and I have no idea where I got that impression.    I was thinking you were asking if you should hide his levels from your/his doctor, and I was wondering how that was going to work.

I do agree now that if you have 2 different doctors, you might want to hold off mentioning your dad's levels to your doctor or surgeon.   There is no need to take a chance of delaying your surgery.    It takes so long to obtain a diagnosis and get that surgery scheduled, you don't want to delay it even longer.     You would be of more help to your dad if you got your surgery over with.   He might need you to help him fight for a diagnosis.    

It is wonderful that you were able to help him as much as you have.    My mother died of a stroke 6 years ago.   It will be 6 years on the 9th of January.    She had uncontrollable hypertension for a few years before she suffered the stroke.   Six years ago, I had never heard of hyperparathyroidism.   It was 2 years after her death that my symptoms all started, and my PTH was found to be inappropriately high for my calcium levels.     I wish I could have had this issue a few years sooner so maybe I could have helped my mom.    I guess her calcium must have been normal when it was checked, so none of her doctors thought to test her PTH.    She had terrible pain in her ankles.   We all just figured it was arthritis.   It got to where she would not attend my granddaughters' soccer games because she was unable to walk on the grass.  She said it was too bumpy.    Sure wish I could bring her back and have her PTH tested!!  

If your dad's doctor tells him he does not have pHPT because of the normal PTH. You might want to remind the doctor that a calcium as high as his at his age is NOT normal! With a calcium that high, his PTH should be lower, even if it is normal now.

As far as your scan being negative. I would like to say that I only had 1 scan. It was performed the morning of surgery. It was negative. A few minutes later I had 2 adenomas removed! You must keep fighting for your surgery!  

So I do agree with the other ladies here.   It would probably make more sense to get yourself taken care of first, and then help your dad.   It sounds like you are very close to getting your surgery, so it won't be long before you can concentrate on your dad.

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 11:04 pm

Brilliant info Audrey thanks !

I'm terribly sorry to hear of your loss of your mother. My grandfather (dad's dad) died at a youngish age from a stroke also. I've always had my worries about my dad... he's never been right in many ways. And I am.desperate to help him  it unfortunately I don't think he wants to accept it and chooses to ignore things. However he deals with things in his own way compared to me. I have to know answers and find more info... him on the other hand doesn't want to know. Any way I think he's coming round to the idea as he is going to a follow up appointment and I have advised him and the innapropriately normal pth. 

As for me.I had 2 blood tests coming up this month before my appointment on the 27th.  My endo said the surgeon may want to see more evidence that my calcium is stable on this darn cinacalcet. I'm hoping he will help me considering the whole endo team is in agreement .

As for the scans I was very disappointed but like you said it's not uncommon for nothing to be found I just wished I had been simpler.

Wow I'm so greatful for everyone's help and have learnt alot. I just have to know what's going on its not in my nature to not get to the bottom of things haha ! 
Rachel xxx

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Re: Fathers calcium and parathyroid labs

Post by Kathi209 on Thu Jan 01, 2015 11:20 pm

http://ghr.nlm.nih.gov/condition/familial-isolated-hyperparathyroidism

You might want to look at this Rachel. I hope it helps. I think this is more common then you think. On FB there are a few that had this type of hyper P. I think I would let the doc know, it may be more helpful then harmful. I know the UK does seem big on Fhh, but that is almost always ruled out by a simple 24 hour urine test.  HUGS  Kathi

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 11:34 pm

Hi kathi thank you for the link. It's very interesting and think you could be onto something there.
I don't know why I'm in such a quandry about this info and telling my Dr's I just think it's becase I haven't had much luck as of yet and like everyone else it's a bumpy ride to getting surgery. 

My urine test for FHH was ruled out, I think it's just the normal pth hormone that stops the doctors in their tracks with my case. 


If I do decide to tell my endo I'm not sure if to inform her before my next appointment as she will be there with the surgeon or if I email her with the latest info. 


Or just say nothing and leave it.... urhhh it's kept in me awake at night haha.


I've read FIHP sometimes has nothing to do with MEN syndromes but then it can. I guess FIHP can be determined when everything else is ruled out and with a family history.


Thank you for your help, I appreciate it so much ! 


Rachel xx

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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Thu Jan 01, 2015 11:47 pm

Kathi,  
This is from the link you sent me. .. and I think this what my be happening 

CASR gene mutations associated with familial isolated hyperparathyroidism lead to the production of a less sensitive CaSR that requires an abnormally high concentration of calcium to trigger signaling. As a result, parathyroid hormone is produced even when the concentration of calcium in the blood is elevated, allowing the calcium levels to continue to rise. A small number of individuals with CASR-related familial isolated hyperparathyroidism have enlarged parathyroid glands, and overproduction of parathyroid hormone from these abnormal glands further contributes to the elevated calcium levels in the bloodstream. The excess calcium causes the characteristic features of this condition.


This is where my theory was going. ... now the question is do I say something as if this is true then maybe the surgeon needs to know this before surgery as it may be more likely to fail. 


Rachel xxx

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Re: Fathers calcium and parathyroid labs

Post by Hadleigh on Fri Jan 02, 2015 9:17 am

Rachel I personally think in fairness to the doctors you should give them any info that might affect the surgical procedure and/or the outcome. If it makes no difference to their decisions then you have lost nothing but if it does then it is better for you they know now. 

Nelly
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Re: Fathers calcium and parathyroid labs

Post by Brigitte0 on Fri Jan 02, 2015 9:22 am

Hi Rachel 

Has FHH been ruled out by a blood test or just by urine output?  Realistically it can only be ruled out by the genetic blood test. If it turned out that FHH was involved, surgery would most likely be useless and you would end up in a similar position to Amanda now. On the other hand, if there is a MEN issue, surgery would be beneficial surely, but the Endo and surgeon need the whole picture and not just part of it.

I know how confused you must feel, but I almost become uncomfortable with so many people offering varying advice and it's why I don't go to the Facebook group any more. We can all do our research and diagnose hyperparathyroidism, but none of us can actually scrub up and perform a parathyroidectomy! Don't get me wrong, I have been incredibly grateful for the advice and support especially from this group, but it is guidance and shouldn't be telling you what to do. At the end of the day, it's you there at the appointment and you must do what you think best.

I'm sorry your Dad is suffering in any way and hope that his symptoms can be relieved as well as yours. 

Take care and I hope this year brings you good health and happiness. 

Love and hugs 

Brigitte xxxx
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Re: Fathers calcium and parathyroid labs

Post by rach260190 on Fri Jan 02, 2015 11:02 am

I really appreciate everyone's input so thank you and brigitte I understand what your saying it's hard to distinguish information and everyone's situation is different. All info should be used as guidence. 

I had  FHH ruled out by urine output at it was quite high if I remember rightly. I have osteopenia low phosphates and other biochemistry to go along with phpt. 
It just seems too much of a coincidence about my dad and his elevated calcium and health problems.

If I am to tell.my endo I don't know if to do it before my next appointment via email with his results.  As my appointment with the surgeon could be useless with this new info or it may not change anything. 

I just want to do the right thing for him and me

Many thanks Rachel

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Re: Fathers calcium and parathyroid labs

Post by Londanna on Fri Jan 02, 2015 1:57 pm

Oh Rachel!

Your poor dad and poor you to be in such turmoil

Your dad sounds that far from being stubborn he is almost certainly paralysed with fear.   Not unusual, especially with men.   Its really good news that you have been able to get him to agree going to the doctor as a first step.   However, it is NOT normal for a 60+ year old these days to have to go upstairs on all fours and be so infirm and he probably has many good years ahead of him.    I dont know what is wrong with your dad but....   Even if you suspect that he is suffering from the same symptoms as you, (or vice-versa) and that could be suspicious, then it is definitely and completely down to HIM, not YOU, to get some investigations going and for HIM to mention to the doctor that you, his daughter, are suffering in the same way.   Its his responsibility to get the information out there and to get something underway.   If there is an hereidtry aspect to his problem, then you may have inherited from your dad.

In your shoes, I would arm your mum with a list of the problems your dad is coping with and get her to speak for him.   If you fear there is something terrible wrong with you, its really hard to speak up in front of a doctor because you dont really want to hear what he has to say.   It could just simply be a case of arthritis, in which case there are drugs which will help (and will need) and the same for almost everything else he might have.  

If the doctor is any good, when he hears the symptoms and details about you, then alarm bells will be ringing and he will arrange for some blood tests (which your dad should have in any case) and take things from there.   If he wont listen then your Mum will have to take things further.   You have your own problems to sort out but I definitely think anyone treating you will want to note down that your dad is having investigations.   And I am sure that once your dad knows what is wrong, he will be mightily relieved.   Then, you will also have a full picture going forward with your own problems.   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 hope that you will get some answers soon and fingers crossed for a good outcome for both you and your dad.

Anna

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