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Newbie from Denmark suffering from weird symptom

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Newbie from Denmark suffering from weird symptom Empty Newbie from Denmark suffering from weird symptom

Post by sm138929 Sat Jun 11, 2016 3:39 pm

Hi All ,

  I am from India and living in Denmark for past one year. I am a 37 year old male with family  who is in a weird state with some typical symptoms and blood results. 

My PTH levels are fluctuating from 90,71,82 and calcium levels from 10.2 ,10.1,9.9,9.8 . I am having a pathetic life with IBS ,frequent urination,hair loss ,back ache ..Recently developed nausea . My doctor said to wait and watch before referring to the Endocrinlogist. My Vit D was also very low before I took the medication and again it started to fall once I stopped the medicine. Also I am having dry eyes,dry skin, very bad mood ,having visual disturbances ,hearing problem. 

Additionally I have frequent urination and IBS D like symptoms.

Always I feel I am having a kidney failure since my father is a CKD patient and my mom an Osteoporosis one. 

I am not sure in last few months the calcium,PTH,Creatinine was fluctuating along with ALP,Sodium and Potassium. 

I lost around 4 kilos since Christmas and almost going bald. I am supposed to get a bone density scan. Please let me know if I get surgery of parathyroid will my symptoms improve and have a better renal function. 

Thx,

Samon
Denmark

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Post by Hadleigh Sat Jun 11, 2016 4:02 pm

Hello Samon and welcome to the forum,

Sounds like you are suffering with many symptoms which do point to hyperparathyroidism. I don't know the ranges used in Denmark so I can't really comment on your results, if you have the ranges then do post them.

With your symptoms and presumably high calcium and PTH I think you should push your doctor to refer you sooner rather than later, no sense in waiting for things to get worse, I would also suggest you have thyroid tests done as many of the parathyroid and thyroid symptoms are similar, quite a few of us have both parathyroid and thyroid disease so there appears to be a link.

Do some research to find a good Endo who is experienced in parathyroid disease, many are not ! the Endo will hopefully refer you for scans to locate a possible adenoma, then on to a surgeon if appropriate. An operation will more than likely cure your symptoms however it's not always immediate, some may improve quickly some may get better over time.

Hopefully other members will be along to add their thoughts, keep us posted and good luck !

Nelly

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Post by sm138929 Sat Jun 11, 2016 4:42 pm

Hi Nelly ,


        Thanks for the quick response. PTH Normal values are 10 to 55 pg/mL.Mine are 90,71,82 in past three tests in last 8 weeks. Creatinine Normal ranges are .8-1.2 mg/dL. Mine is almost touching 1.12. And Serum calcium level 8.5 to 10.2 mg/dL .TSH levels are in normal level. In Denmark we cannot go to a Endo directly unless we are referred by GP. Please excuse the text fonts ...It is showing bit weird as well. My question is if my renal and intestinal  function is decreasing now will the surgery help in restoration. 


Thanks,


Samon

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Post by Hadleigh Sat Jun 11, 2016 6:07 pm

I'm afraid nobody will be able to answer that question, there are no guarantees with surgery, some will feel better and some not. When I had my surgery the surgeon told me the only thing he could guarantee would be a lower calcium and any other improvements would be a bonus.

We also need a referral from the GP although some private Endos will accept patients without a referral. I don't know the system in Denmark but in the UK we can choose which hospital and Consultant we want to see, if you don't have a choice where you are it's a bit more tricky.

Sorry I can't give you a more definite answer, there are some post op threads on the forum which might help you understand the pros and cons of surgery better.

Nelly
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Post by Admin Sat Jun 11, 2016 6:45 pm

Hi Samon

With TSH there is no such thing as 'normal', except in the eyes of doctors and blood labs.
I do not know what the TSH range is in Denmark, but the so called normal range is far too wide and the upper level is far too high. Each of us has a much narrower range near to the lower end of the so called 'normal' range.
Also, TSH is not the only blood test to identify hypothyroidism. Free T4 and Free T3 are also significant. Even when all three of these look OK, you can still have hypothyroidism, due to factors that can inhibit absorption at a cellular level, so diagnosis by symptoms is also very important.

This information on creatinine may be helpful: http://www.rixg.org/results/creatinine.html
Typically, PTH increases as renal function decreases to moderate/severe. Urea should also be tested if there is suspected loss of renal function.
Raised PTH due to reduced renal function is secondary Hyperparathyroidism (HPTH). I have this and it can be treated with Cinacalcet instead of surgery.

However, surgery is the solution for primary HPTH.

For further reading, take a look at this: https://hyperparathyroid.forumotion.co.uk/t388-useful-website-links

Edwin (Admin)
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Post by sm138929 Sun Jun 12, 2016 2:07 pm

Hi All,

     Thanks for your comments. I will ask my GP for the Thyroid tests. By the way I finally got appointment to see an Endocrinologist who will check my latest blood tests and do a Bone density scan. 

My question is : If my calcium level is going to normal  from past two abnormal stages but PTH still going up around 76 pg/ml will this normocalcemia indicate PHPT.My calcium is around 9.8 mg/dl. Still got the other problems of frequent urination,lowering of Vit D , visual disturbances,ear tinnitus ,weight loss,back pain

Regards,

Samon

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Post by Admin Sun Jun 12, 2016 4:24 pm

A thing to be aware of is that most Endocrinologists know about about diabetes and have limited knowledge and understanding of Thyroid and Parathyroid issues.

Edwin
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Post by Admin Sun Jun 12, 2016 4:40 pm

Nelly suggests that this article about Normocalcemic Primary Hyperparathyroidism may be useful:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127400/


Edwin


Last edited by Admin on Sun Jun 12, 2016 7:16 pm; edited 1 time in total
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Post by sm138929 Sun Jun 12, 2016 6:20 pm

Hi Nelly ,

  Unfortunately this article page is not found  . 

Thx,
Samon

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Post by Admin Sun Jun 12, 2016 7:17 pm

sm138929 wrote:Hi Nelly ,

  Unfortunately this article page is not found  . 

Thx,
Samon

Sorry, there were two hidden spaces in the link.
It has been corrected, so please try again.

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