PTH Advice and Symptoms, I'm a newbie.

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.

Hi Lucie,

My first thought about all of this, looking at your symptoms is to have a look at b12.

there is a society called pernicious anaemia society,

www.pernicious-anaemia-society.org.uk

I also have a b12 problem as well as high calcium/ PTH. I am no expert, but your symptoms seem familiar to me.

best wishes

Lozza

Thanks Lozza.

That was tested in February and the result was Serum Vitamin B12: 497ng/L (Range 180.0-800.0) I did read the Anaemia could cause a slight yellow in whites of eyes, is this correct?

Thank you

Hi Lucie,

I suggest having  a look at the website. There are 2 tests for b12, serum which just tells you how much b12 is sloshing around your system and Active b12 test which says how much is actually being used at tissue level. this is normally only around 10- 30% of your serum level and typical ranges are 25-170 ish.

There are load of symptoms that b12 can have, yes you serum b12 is in ref range, but some people need a lot more over 500 at least.

symptoms off hand are;
brain fog
pins and needles
out of breath
skins problems etc.
thin hair
if you have autoimmune diseases in your family this can also be  a sign. my mum has graves, my gran has pernicious anaemia and I also have pernicious anaemia as well as parathyroid.

I suggested the pernicious anaemia website, for you to have a look as ther is lots of useful information, too much for me to go into.

best wishes

Lozza 

Thank you. I will certainly have a look at this. How many times can you go back to the doc and demand tests without being fobbed off like I am :-(

Welcome Lucie,
    I am sorry you were received the way you were.  I have been there and it is not a comfortable feeling.
I see one of your B12 levels was under 400 and one over.   I know they can check homocysteine levels too which checks for a B12 def but your numbers don't seem extremely low.  I have to say B12 is extremely important.

    Your calcium levels do sound  elevated to me and you have symptoms of HPTH disease also. 
One thing I have learned on this board and the facebook board is that when people are having or suspect they have parathyroid problems they have to bypass an endo and go straight to an endo surgeon. 
      On the facebook page there is a file for a normogram which compares a calcium, a vit D and a pth all from the same draw and then computes the likelihood of parathyroid disease.

Glad you wrote your letter.

Nancy

https://www.facebook.com/groups/Parathyroidconnections/ 

Here's the facebook parathyroid site if you wanted to look at the files at the very top of the page. 

Nancy

Welcome. Lucy! it does sound like you're suffering terribly from SOMETHING! I am so sorry to hear this.

At first glance, I would say I don't think it's your parathyroid glands causing the problem. I think your PTH levels should be quite a bit higher to make that diagnosis. My most recent post-op levels were calcium 10.2 (2.55) and PTH 31.7. Before parathyroid surgery, I also had calcium of 10.2 a few times. One of those times was immediately before surgery. At that time, my PTH was 62.5. Now after surgery with the same calcium level, the PTH is 31.7. However, there is no guarantee I've been cured of the disease, so I can't know for sure that these levels are good.    I have entered them in the normogram, and it tells me hyperparathyroidism is less likely. I hope it's right!

I think you would need to get a few more calcium and PTH levels to make a diagnosis of HPT. I noticed when you listed your results, you had calcium and PTH tested at different times. You need to have them tested at the same time, from the same blood draw, to determine a diagnosis.

The link for the normogram is listed under the reference section here on the forum, if you'd like to enter your numbers.

Lozza and Nancy have some good advice up there. I have heard many people speaking of B12 deficiency. Would be worth looking into.

Audrey

Hi All,

Thank you all for your responses. I have just done the Normogram and my results came back HPTH Likely? This is the 2nd App to tell me this as I downloaded the Calcium App by Dr Norman and that result was "a Very Likely" but how can you present that to a specialist?

I will look into the B12 Deficiency although I'm pretty sure my GP will tell me I'm within "range" and hope for a response from my Endo after I hand delivered my 3 page letter :-)

X

I am a bit confused, Lucie. I am seeing that you listed a calcium of 2.55 (10.2 in US numbers) and a PTH of 2.4 (22.6 in US numbers). When I enter my own US numbers of calcium 10.2 and PTH of 31.7, my results on the normogram are "Less Likely." I am wondering how your results are "Very Likely"? Am I missing something here?

Audrey

Hi Audrey

Sorry you are confused, I am too :-) I had a high Vitamin D (25-Hydroxyvitamin) in the same lab results which was 140 nmol/L, I was told this was high due to being in Sydney sunshine. The only other thing I can think of is my age, I'm 30, maybe the levels are too high for my age?

Lucie

Hi Lucie,
just having another look at your blood test- you tested positive for ANA screen, has this be followed up or explained what this is about ?

just a thought

lozza

All that wS said about my ANA was that it was a weak positive and it will need to be tested again in 6-12 months. I also had this result on Thyroid Antibodies, Anti-TPO Antibody <5.6 (<5.6 kIU/L) I thought at the time maybe it's Hashimotos or Graves? As it stands Lozza, I'm unremarkably healthy according to Endo, I know my body and something is going on.

Hi Lucie,

anti nuclear antibodies is also a sign on pernicious anaemia ( b12) have you also had intrinsic factor and partial cell check- this is also for b12 problem ( these test are only 50% and 80% accurate) but are a bit more of an indication ?

 I really hope you get some answers soon.
best wishes

Lozza 

Is Pernicious Anaemia an Autoimmune Disease? I've only had B12 tests so far. Thank you for all the help, it's really appreciated

Lucie

Well, vitamin D is usually very low with hyperparathyroidism, when calcium is high. And I still don't know how your levels of calcium and PTH would result in a "Very Likely" result on the normogram. Which numbers did you enter?

I would be more apt to think maybe a thyroid problem. The symptoms of both are very similar. I am dealing with both, so I am not sure which of my symptoms are being caused from which disease!

I'm sure in time you'll get it all straightened out, but I know it's #@!! getting to that point! It's so hard to have to suffer so badly in the meantime!

Audrey

Yes pernicious anaemia is an autoimmune disease.

I asked for Vitamin D to be checked again as I have been home in the UK since Jan but GP haven't tested it :-(

And the saga continues.......

Hi Lucie

Well done for putting all your results in a post. That's really useful.

Your thyroid levels look OK to me (but Edwin might be able to comment here).

Your calcium seems to run high in the range, as mine does, and your albumin is always quite high which is why they don't always adjust your serum calcium, which is a good thing. It means they have to take only your serum calcium into account. (My hospital lab always adjusts my serum calcium downwards for the high albumin and so the endo always says that my (adjusted) calcium is not at all high.)

Your PTH doesn't look too high (but the calcium and PTH need to be from the same blood draw to check their relationship, and hence the possibility of pHPT).

Your Vitamin D level is souper-douper! As you will have read on Dr Norm's website, Vitamin D is often quite low in pHPT. (Mine was around 16 when it was first noticed as low.)

I'm no expert, so this is just another pair of eyes on your lab results, but your ferritin seems a bit low - and Amanda and others might be able to help out with this one.

Also, your 9am cortisol is also a bit low. Apparently a level above 500 nmol/L indicates an adequate adrenal reserve, but anything below 100 is an inadequate response, according to my book of Clinical Medicine (P. 782 Kumar & Clark - my "bible" but an old edition now). For comparison, my 9am cortisol test was 611 nmol/L, so at least my adrenals are hanging on in there!!

Just my thoughts, Lucie, and I'm sure others will chip in soon. It might be worth pointing out the results of the cortisol test to your GP and asking if it seems a bit low and "if it might be useful" to repeat it. (I hate having to pussyfoot around the so-called experts - grrr - but sometimes it has to be done!) And perhaps you might research adrenal reserve in the meantime, so as to be armed with some useful information.

Keep us posted on how you get on - Love from Tigerlily xx

Hi Lucie
Ditto everything else said by Tigerlily et al. I would say though your ferritin levels do seem to be dropping, they aren't at the point to worry about, but as this is the level of iron stores in your body you need to keep that topped up to prevent unpleasant symptoms. If you can tolerate iron supplements you could take a low dose to boost it a bit. Maybe worth checking with GP to make sure it won't impact on anything else you are suffering from.
Mine get as low as 3 sometimes and that's with an iron infusion every 6-8 months   
Although your PTH is still in ok range if your calcium is high your PTH should be very low if the glands are working properly.
Good luck with getting to the bottom of this.
Amanda xxxx

Thank you TigerLilly and Amanda.
I am researching for a private Consultant today as I've had enough. The support forums are amazing, well done to everyone that posts on here and the people that work and create it, your support is amazing, better than support from your GP.
I find the Endocrine system very confusing :-) would you suggest I go back to my GP and get my Calcium & PTH tested before seeing a private consultant so I can take it all with me or are the private tests better. I need to get my Vitamin D tested again as when it was very high is been in sunny Sydney for 6 months and have been home in the UK since end of Jan.
Thank you all again
Love Lucie

Hi Lucie
I would definitely get your tests done before hand, they will be the same as private but if you are paying and don't have health insurance you will have to pay for the tests on top of the consultation. Plus it will speed things up.
Amanda xxxx

Yes, looking back on your results, Amanda is right, Lucie. With a calcium at the top end of the range the PTH should be very low in the range (almost on the floor - according to my Clinical Medicine book PTH should be almost "undetectable"), as Ca and PTH are in inverse relationship when the system is working normally.

So it looks as though you may have the same situation as me with both calcium and PTH high in their respective ranges together, and no medic yet has agreed with me that this isn't right.

But, what part of the country are you in, Lucie? Maybe someone on here can recommend a good endo for you to be asked to be referred to to get to the bottom of all this.

Let us know your location.

Love Tigerlily xx

Thank you. I will make an appointment with my GP, I dread seeing them :-)

Tigerlily I am in Colchester, Essex. I have found researching that most private Endo's are specialist in Thyroid and Diabetes but not really Parathyroid. I found Dr Simon Smith but still unsure whether to see him or not?

http://www.privatehealth.co.uk/privatespecialists/find-a-doctor/endocrine-surgeons/simon-smith/