PTH Advice and Symptoms, I'm a newbie.

First topic message reminder :

Hi All,

I am new here. My name is Lucie, I am 30 years old and a Mum of 2. I have been battling with GP's and my current Endocrinologist regarding my health over the past 16 months.
I have listed below as many tests as possible, I realised in Novermber I had elevated Calcium levels whilst I was in Sydney (there for husbands work) and these have continued to stay elevated as well as fluctuating PTH. This is my first post and I would appreciate advice. I've also had my Thyroid tested as I can relate to symptoms of both Hyper & Hypo, my Mum is Hyperthryoid. I have symptoms of thinning hair around scalp, fatigue, muscle aches, bone pain in fingers and wrists, palpitations, headaches, brain fog, abnormal LFT tests which have been slightly elevated, bloodshot eyes, the whites of my eyes seem very dull, tummy discomfort, constipation, the list is endless. I see the Endocrinologist beginning of Apr, which I had to push my GP for the referral and it was only because I burst into tears during the appointment after he threw the depression/anxiety card at me that he started to take notes. I'm waiting for an appointment for an Adrenal Glands test. I was upset and angry after my appointment that I wrote him a 3 page letter with all my symptoms from start to finish and I didn't get chance to get anything off my chest during the appointment because as soon as I sat in the room he said "I'm a little unsure why you are here" that threw me totally and made the appointment uncomfortable and made me feel like I was crazy!

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)

Sorry it's so long, I've also had 2 Thyroid Ultrasounds as 2 GP said Goitre but ultrasound said normal. 1st ultrasound said tiny Cyst on left lobe and 2nd Ultrasound in Mar said 2nd Cyst on right lobe, no concern from Endo. Random red marks appear on my hands that turn into painless bruise looking marks. I downloaded Dr Norman's Calcium Pro App, put in all my results and it said "Highly Likely" for Parathyroid Disease. Tired and fed up of being ignored by doctors.

Thank You all for listening.

Gosh, Lucie - I'm up the road in south Suffolk in Sudbury!

I've had a look at Simon Smith's website you provided and he looks OK to me. It seems to say all the right stuff on there, in my view. I hope others will chip in on this, especially anyone who has seen him.

What's important is that he seems to have trained at the Hammersmith in London and it has a renowned endo centre that includes Fausto Palazzo, whom Jasmine is seeing at the moment.

Are you intending to go privately? If so, it will get you there sooner for a diagnosis.

If you follow my thread "Seeing Jasmine's Dr Levy" you'll see that I have an appointment on 22nd May with her 'tame' endo Dr Miles Levy in Leicester (about 2.5 hours' drive from here, so maybe 3.5 hrs from Chelmsford). I'm paying for an initial consult but have been assured that I can get referred back into the NHS system for further tests and any treatment. But if I need treatment, I hope Dr Levy will refer me to Fausto Palazzo at Hammersmith.

Perhaps Jasmine will add some comments about possibly seeing Fausto Palazzo in the first place from where you are?

Keep on looking at the forum, Lucie, as everyone is available to help as much as they can.

Love from Tigerlily xx

Wow that is close :-)

Simon Smith seems to be fine but I noticed he also works at Broomfield Hospital, Chelmsford which is NHS, so I'm not sure whether the NHS attitude would seep through, which is what I'm trying to get away from as I am going Private.

I will have a thorough read through the Forum tonight once the children are in bed :-)

Thank You

Hi Lucie, I reckon nearly all NHS consultant physicians also have private practices. Because they are the cream of the crop the two days and a Saturday that some of them work privately never affects their NHS commitments.

The upside to this is that you can get referred back in if you have a problem identified. Private tests are a real racket and sometimes they want these done at their private place but some are more flexible.

Best wishes, John