Confused and worried :-(

Hi All
In the process of sorting an appointment with a Private Endo/Surgeon and found one who works NHS 3 days and Private 2 says.
Having previously posted my results a few weeks ago on the website, I contacted the consultant prior to arranging an appointment with a brief history and he thinks it DOESN'T look like Hyperparathyroidism but definitely wants to help getting to the bottom of it all and will run all tests and possibly scans.
I downloaded Dr Norman's Calcium Pro App months back and uploaded all my results and it came back with "very likely PTH" I'm not saying this App is better than face to face with a private Endo but I've had SO many blood tests over the past 8 months, found out by accident I had elevated Calcium, did my own research and surprised I related to 90% off HPTH symptoms. My PTH levels are never steady when I've had bloods taken, mid range, high end range and then normal range but always an elevated Calcium. I'm only 30.
I just don't know what to do now, I've got myself in a bit of state this evening as I know what else Dr Google will say if I research Calcium levels :-( I have bone/joint pain in wrists and fingers, fatigue, headaches, tummy troubles, constipation, palpitations, list is endless!
I'm sure the Consultant knows what he is talking about but already I'm just feeling unsure and worried :-(

Hi Lucie,
I know exactly how you are feeling and it is really unpleasant and scary, it is as if feeling rotten is not enough and that we have to beat ourselves up a little more on top.  I too know that I should not be googling especially as there is a lot of out of date information and a fair bit of quackery too.  Sooo please don't rely on everything you read to be the gospel truth.  First you are not wasting the consultants time, you know when you don't feel right and you would like some answers as to why your calciums are high.  It is his job to do that and give you some peace of mind.  When I was your age, low iron was my biggest foe, and was at the root of my fatigue but I am sure he will check that as well as your thyroid and get to the bottom of it all for you.  
Please don't worry so and let us know how you get on.
Sue

Thank you Sue. I felt comfortable with him just from his email as he was very genuine but I didn't expect him be that honest with me before a consultation :-) but I suppose he'd rather not lead me up the garden path before we've even started. I will let you know how I get on with my appointment with him, he's also an Endocrine Surgeon which also is reassuring.
Thank you again and I hope we can all get to the bottom of our symptoms xxx

Hello Lucie
The same thing happened to me the consultant wasn't convinced I had a parathyroid adenoma until he ran his own blood tests. Then he said there might be one. Then an ultrasound scan showed the adenoma. Sounds like the doctor is keeping an open mind. Just go with the flow and see what happens.
maggie2 x

No, Lucie, not all endos know what the heck they're talking about!!! I had a PA, an endo, and an internist all working on my case. None of them were convinced I had hyperparathyroidism. I struggled trying to convince them for 3 darned years! I even contacted Dr. Norman 3 months into it all, and he also dismissed me, saying it looked like my parathyroid glands were doing exactly what they were supposed to be doing because the PTH increased and the calcium decreased and it decreased when the calcium increased. Problem was, the PTH was ALWAYS inappropriately high for the calcium levels! I finally contacted Dr. Norman again, he diagnosed me, and removed 2 tumors this past November!! Believe me, I know how distraught you are right now, but you can't give up! I know you feel there is no hope, but there IS! Would you mind posting all of your serum calcium and PTH levels? I am very interested in knowing what they have been. Try to keep smiling. I know it's hard, but eventually you will find a doctor who understands this %$#$% disease!

Audrey

Hi Lucie

Who is it you are going to see, by the way?

Other forum members may have some experience of him, is why I ask.

Love Tigerlily xx

Hi everyone,

Thank you so much for the replies. I'm going to see Dr Simon Smith at Ramsey Oaks, Chelmsford. Only communicated with him via email so far and he is open minded, he said it doesn't sound like a Parathyroid issue BUT he will redo all the tests and necessary scans and then come to the conclusion. Trouble is I had a lot of tests done whilst I was in Sydney and my calcium was always over their range and then I had the PTH checked, first of all mid range and then second time it had doubled but still within their ranges. I sometimes have a gut feeling I'm going that way and then other times I think it's something else :-(

Audrey I will post results.

August:
Calcium 2:58 mmol/L (2.10-2.55 mmol/L)
No PTH tested

September 2013:
TSH 0.520 (Range 0.400-3.50 mIU/L)
T4 16.9 (Range 9.0-19.0 pmol/L)
No T3 tested

November 2013:
TSH 1.29 (Range 0.400-3.50 mIU/L)
T3 4.2 (Range 2.6-6.0 pmol/L)
T4 13.6 (Range 9.0-19.0 pmol/L)
Calcium: 2.66 (Range 2.10-2.55 mmol/L)
Calcium corrected: 2.54 (Range 2.10-2.55 mmol/L)

January 2014:
TSH 1.97 (Range 0.400-3.50 mIU/L)
T4 13.8 (Range 9.0-19.0 pmol/L)
No T3 tested

December 2013:
Calcium 2.56 (Range 2.10-2.55 mmol/L)
Calcium Corrected NR40 - No result: corrected calcium only reported if the Albumin lies outside 40-45 g/L range
Albumin: 45 (Range 35-52 g/L)
Intact PTH: 32.2 ng/L (Range 15.0-68.0 ng/L)

January 2014:
FT4: 13.8 (9.0-19.0 pmol/L)
TSH: 1.97 (0.400-3.50 mIU/L)
No T3 tested
Intact PTH: 61.7 (Range 15.0-68.0 ng/L)

TgAB 2.6 (<4.1 kIU/L)
Anti-TPO Antibody <5.6 (<5.6 kIU/L)
B12 - 348 (138-652 pmol/L)
RBC Folate - 825 (285-1475 nmol/L)
Iron - 19 (8-30 umol/L)
Ferritin - 55 (30-200 ug/L)

Calcium: 2.49 (2.10-2.55 mmol/L)
Calcium Corrected: NR40 No result: corrected calcium only reported if the Albumin lies outside 40-45 g/L range
Albumin: 44 (35-52 g/L)
AST: 40 (Range 12-36 U/L)
ALT: 72 (Range <55)

ANA Screen - Positive
Nucleolar - 40 Titre
Rheumatoid Factor <20 (<20 IU/mL)

January 2014:
Calcium: 2.59 (2.10-2.55 mmol/L)
Calcium Corrected: NR40 No result: corrected calcium only reported if the Albumin lies outside 40-45 g/L range
Albumin: 45 (35-52 g/L)

February 2014:
TSH: 1.00 (0.4-4.0mu/L)
FT4: 20.1 (12.0-22.0pmol/L)
No FT3 tested.
Serum Folate Level >20.0 ug/L (3.0-20.0)
Serum Ferritin Level 49ug/L (25.0-300.0)
Serum Vitamin B12 497ng/L (180.0-800.0)
Intact PTH: 2.4 (Range1.1 - 6.9 pmol/L)
Calcium: 2.55 mmol/L (Range 2.2 - 2.6)
Corrected Calcium: 2.49 (Range 2.2 - 2.6)
Phostate: 1.00 (Range 0.8 - 1.4 mmol/L)
9am Cortisol Level: 231 nmol/L (171.0 - 536.0)
ANA: Titre Levels 1:80

March 2014:
Serum Total Protein 81g/L (60.0-80.0)
Serum Albumin Level 52g/L (35.0-50.0)
ESR 2mm (4.0-12.0)

Hi Lucie,

Sound like your nhs endo wanted to do a Short Synacten Test , This is to check for adrenal glands. You are young and i have a feeling that which ever Doctor you see, will want to check many of the endocrine glands and auto immune disease to see what is happening.


Please mention to whoever you see that you have tested positive for anti nuclear factor as they might want to do a wider arrange of blood test . Also if you have endocrine / auto immune disease in your family also worth mention.


My own story is taking also a long time to sort out, but i do have added complications, like a lot of auto immune diseases in family - i have a feeling, this is why it is taking time.


Try, not to get wound up by it all, you are making decisions and hopefully with a few more tests results , this will be able to show what is happening.


i know switching off is not easy, hey i need to follow my own advice, but i know if i get too stressed by it all, i lose the little energy i have.
let us know how it goes


take care


Lozza