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Blood results and other issus

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Tigerlily
tiniegil
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Blood results and other issus Empty Blood results and other issus

Post by tiniegil Fri Nov 21, 2014 2:29 pm

Hi Everyone, not been on for a while but just wanted to ask if anyone else as the following problems, first though my latest blood test showed:

 Serum Parathyroid hormone of 16.7 pmol/L range is 1.60-690 pmol/L

Serum Calcium 2.72 mmol/L range 2.15-2.65 mmol/L
Serum adjusted calcium conc 2.62 mmol/L range 2.20 -2.60 mmol/L
Liver function serum ALT level 34 u/l  range 10.00-40.00 u/l
Serum alkaline phosphatase 141 u/l   range 50.00-110.00 u/l

What would you derive from these results as I get a bit bamboozled by it all?

Also experiencing cramps in legs and feet and bad back which I think is sciatica as can not lift right leg much, to top it off feel sick a lot of the time and  and have discomfort in right hand side under ribs and middle upper stomach very tender !

So many things driving me crazy.

I had an ultrasound in January which showed an enlarged spleen and enlarged right hand kidney plus gall stones, have just had another ultrasound awaiting results now, sonographer did ask me if my right hand side was sore which it was but did not say anything more .
Have got an MRI for spinal/lumbar and sacral in December.

Overall would not wish any of this on anyone has anyone else had similar and if so what did they do for you medically wise ? my GP said about 12 months ago they would not do anything just monitor, cannot help but think there is a link somewhere to it all.
Have just had nearly 2 weeks off work as walking around was becoming so painful with back (oh and bit I missed was groin/top of let right hand side sorta giving out on me and painful) obviously not being at work is also difficult as put  pressure on others so hence any advice will be graefully received.

tiniegil

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Post by Tigerlily Fri Nov 21, 2014 3:19 pm

Hi tiniegil

Nice to "see" you here again. Sorry you're in so much pain, but I would think it is due to the high serum calcium of 2.72 (my highest was 2.73 and I have an adenoma seen on US) and the inappropriately unsupressed PTH level of 16.7 (my highest was 13).

Your liver function test level looks OK. Your Alk Phos is elevated. Has your GP or anyone else commented on the high Ca, PTH and Alk Phos levels? I think the high Alk Phos is connected with the bone symptoms/pain.

Are you being seen by an endocrinologist, or is your GP co-ordinating these investigations? I think the link to it all is parathyroid related and you need to ask for a "second opinion" now from an endo with some experience of parathyroid disease. Having to be off work with the pain, means you really have pain!

Looking forward to your reply, so as to help further if we can.

Love from Tigerlily xxxx

Tigerlily

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Post by Brigitte0 Fri Nov 21, 2014 3:54 pm

Hi tiniegil

Like Tigerlily, I really would ask for a second opinion as it could be that your problems are all linked to a parathyroid disease. Your PTH is high in relation to your calcium level which is indicative of hyperparathyroidism. Have you ever been offered an ultrasound of your neck or a bone density scan or has your GP or Endocrinologist (if you have one) discussed how long you should be monitored?

Take care

Brigitte xx
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Post by Hadleigh Fri Nov 21, 2014 6:19 pm

Hi tiniegil

Presumably your pth range should read 1.60-6.90 rather than 690 !! that would be a high end result.

So your calcium and pth are both over the top and require some action.

Your alkaline phos can be bone or liver related and as you have upper right quadrant pain in the liver area that should be checked but if you have gallstones that can also be the cause of the pain. Sounds like you need an MRI as ultrasound is pretty useless on the whole. Your alk phos is not very high so they may just monitor but things need to be ruled out, mine has been in the 3-400's for the last 7 years and no cause found.

Time to get tough with your GP !

Nelly
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Post by Kathi209 Sat Nov 22, 2014 2:01 am

Just another food for thought, you could have some stress fractures. That does happen with phpt. I agree with Nelly you may need some scanning done. Best wishes to you and let us know.   Kathi

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Post by tiniegil Sun Nov 23, 2014 12:07 pm

Hi and thank you all for your assistance and kind words, my GP has said since original diagnosis that he will just monitor me and they would only action a operation  if my calcium went sky high or other things came into play, but did not elaborate on what. I asked him about the operation and he says that it can also have reverse problems with no calcium so therefore monitoring is the way to go that was about 12 months ago. I went back re the problems with leg/sciatica and feeling queasy and bone aches hence why had latest blood tests and ultrasound will post when I get the results of that and MRI in December.
 I always feel a nuisance going to doctors and can see on here how difficult it can be to get a true and proper action plan. 

Apologies Hadleigh yes of course should have read 6.90 not 690 silly me.

Brigette - I have not been offered a ultrasound of neck or bone density scan, would they do this if asked or can you have it done privately if need be?

Tigerlili - I have not seen an endo at all, my GP when he first told me had said he spoke with hospital endo at the time when I had lots of bloods and urine samples all talking with GP only.

Looking at the way to go forward, once I get results is to be asked to be referred to endo /and or ask for bone scan and ultrasound of neck. I will keep checking in on here and also let you know how it goes, am planning a return work for one day this week as got holiday too rest of week, so hopefully will be fine.

Thanks again everyone nice to be back in touch with others who know all the bits n bobs problems sunny

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Post by Hadleigh Sun Nov 23, 2014 12:30 pm

You need to see an endo who can deal with parathyroid problems, many will know nothing about hpth !! So try and find one in your area then demand a referral from your GP. Whereabouts are you ? Maybe someone on here can recommend an endo near you.

Your GP can refer you for a dexa (bone) scan, it will all be useful info to take to the endo when you see one.

Your results do show a definite problem and watching and waiting is not the right approach, your GP is denying you a probable cure and better health. 

Nelly
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Post by Tigerlily Sun Nov 23, 2014 2:27 pm

I agree with Nelly, tiniegil - where are you in the UK?

The upside of having had your GP monitor your care is that he has at least been agreeable to your having the blood tests, US and MRI, and do let us know what the December results come back like.

The downside is that you have not been able to see an endo yourself to explain your situation, and you do have a right (I believe) to ask to be referred to an endo for and endo opinion on endo issues.

I hope Jasmine will chip in here with her knowledge of the NHS pathways and give you the precise words to say to ask for this referral. Nelly will know as well.

Whether or not a GP can order a DEX or a neck US seems to depend on the GP practice. It was a real battle to get an US of my neck (and I do have an adenoma) and my endo said that his colleagues would not thank him for sending me for a neck US!! I still have to deal with him come January!

So it seems to depend - but by all means ask for a DEXA scan.

And by the way, some people do end up a bit hypocalcemic after the operation to remove an adenoma, but this can be dealt with, and it is certainly no reason for your GP to use to justify your not having the operation!

I'm the last person to tell you not to feel like a nuisance when going back to the GP. I might sound assertive on paper, but face-to-face I seem to be just the same as you - hesitant and feeling as if I'm being a pain (in both senses!). But we do have to be assertive in all of this to get ourselves the treatment to which we have a right, and monitoring for 12 months when you have so many signs and symptoms is not ideal (even if it seems to be the norm).

I know I keep mentioning this here, but I suggest you google the paper "Imaging in Hyperparathyroidism" as there is a lot of good information there. Print it off and give a copy to your GP. Just leave it on his desk if he won't take it from you. Have a look at your fingers and knuckles. Do your knuckles look enlarged? And the bones between them feel thin and spindly (so much sometimes that there doesn't seem to be much long bone in between the knuckles at all). According to this paper, this is a classic sign of sub-periosteal bone erosion and this is a clincher for primary HPT.

Tell us where you are in the UK, Tiniegil, so we can help further to locate an experienced endo for you. Even if you feel obliged to see the endo with whom your GP seems to be conferring, you can always ask for another opinion if he is not experienced enough in diagnosing parathyroid disease. You might be able to get referred to a Rheumatologist as well for the bone symptoms, and it was a Rheumy who looked at my blood test results and my hand X-rays (without even seeing me!) and told my GP that I had primary hyperparathyroidism with a minimally raised serum calcium (it reached 2.73 at one point - serum calcium that is, not corrected).

Let us know how it goes - Love from Tigerlily xxxx

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Post by Hadleigh Sun Nov 23, 2014 3:02 pm

I wouldn't bother asking a GP for an ultrasound of something he/she won't have the experience to interpret. Detailed scans are best done once you are with an endo, more than likely they would request their own even if your GP had done them.

With your results I think you could be referred straight to an experienced surgeon but your GP might not oblidge. You are entitled to ask for an endo referral and to one that you want to see, must be one experienced in parathyroid disease.

I actually sourced my own Endo and saw her without a referral, I did go down the private route to speed things up, I only told my GP once I had the appt sorted and she has been fine with it and has done all the tests requested by the endo on the NHS which would have cost a fortune if I'd had to pay for them. 

You do have to be assertive and proactive but once you start taking charge and telling them what you want it gets easier, well a bit easier Rolling Eyes 

Nelly
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Post by Little Audrey Tue Nov 25, 2014 12:52 am

It is a shame anybody has to rely on a scan to diagnose this darned disease. It really isn't necessary. tiniegil, your calcium and PTH levels alone should be enough to get you diagnosed, but, unfortunately, many times it isn't. This is so sad.

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