Feeling lost and no idea what to do next!

[Essex21]

Hi All,

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. 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, palpitations, fatigue, muscle aches, bone pain in fingers and wrists, palpitations, headaches, brain fog, abnormal LFT tests which have been slightly elevated but then return to normal, feeling of swallowing something in throat and sometimes it aches, bloodshot eyes, the whites of my eyes seem very dull, red lower eyelids and feel like they're burning and sometimes feel sore when putting eyeliner on, tummy discomfort, sensitivity to some foods, 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! Today I am so tired and feel tearful, I'm sleeping a good solid 7hrs every night and I am feeling like a slug today. I don't know what else to do, I have private healthcare but am a bit worried of being fobbed off again. Had my Endo appointment a month ago and still had no appointment for Adrenal Glands test. Sorry this is so long but I'm at my wits end!

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)

I've also had 2 Thyroid Ultrasounds as 2 different GP's 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.

[Hidden]

Find someone who specialises in parathyroid disease and go see them privately. Ask them to do a full autoimmune antibody screen as well, to see what else might be going on (I had this done). I always asked my private Endo to run certain tests for me, and he always agreed because ultimately I, or more to the point my insurance company, was paying. I was never fobbed off in any way. I never had RAI or surgery forced on me. I have asked him if I can stay on carbi long term if I relapse and he has said yes. From what I read on this forum this is in stark contrast to the average NHS experience. So please don't have any qualms about going private since you have that option, just spend a little time finding the right person to see.

H x

[Clutter]

I'm 100% in agreement with Hampster. Going private will get you a longer consultation, access to a specialist and tests not available on NHS and usually a better attitude. Research your endo carefully because many are both NHS and private and NHS attitude can sneak in. [e-mail] has a list of thyroid friendly endos and you should contact their secretaries to find out whether they specialise in parathyroids.

[Essex21]

Thank you both. I have been researching today, it's mind boggling. I was about to mention and Specialists being Private & NHS so I so avoid those. Found a couple of private clinics near me, I'm in Colchester, Essex so I will look into. This may sound a silly question, do I avoid the specialists that have an "interest" in Parathyroid or as you said enquirer with their Secretary's?

[Hidden in reply to Essex21]

I'd phone up the secretary's to check exactly what they specialise in. You've got to think of it like you're buying a new product. If it was a camera, you'd ask the shop what features one make has compared to another, and then buy based on which one matches your needs the best.

[Essex21]

Apologies for the bad literacy

[akita100]

An autoimmune disease such as Lupus could be the cause of your fatigue and other symptoms. Your ANA is positive which indicate that you have an autoimmune disease. Perhaps you should be referred to a specialist such as a rheumatologist or (preferably an immunologist). The results of your thyroid glands tests are normal, nothing unusual. Perhaps it's an idee to test your glucose level and also for Lyme disease and Pfeiffer disease.