Lab report says possible primary parathyroidism - Dr says not?

Hello - this is my first post so I hope I've got it right so far!  Have been called back twice in past 18 months for repeat blood tests as calcium levels high but Dr has never followed up.  Last November my serum calcium was 2.67 mmol/corrected level 2.7.  Dr said my vit D level was low (31.2) and gave me an 8 week course of 20000u one a week and to return at the end of course for further blood tests.  When I called for results I was told everything was fine but this time I decided to talk to the Dr to see exactly what 'fine' was.  The results from bloods taken on 27/01/15 were serum calcium 2.5/corrected 2.58 - no vit D level taken.  And these numbers do, to my clueless eyes, look fine. Except that at the top of the lab results list I requested, the lab has written 'Serum parathyroid hormone = 5.1 pmol/L Equivocal PTH, however looks inappropriate for the adjusted calcium, primary hyperparathyroidism need to be entertained.  For further help please don't hesitate to refer the patient to the metabolic bone clinic.  Dr Albahrani'.  I picked these results up from reception after seeing my dr so didn't go through them with her.  I also have an underactive thyroid and as i'm sure members of this forum will be aware, a large number of these symptoms overlap with primary hyperpara symptoms - depression, fatigue, muscle pain weakness etc etc.  Having been told all results were normal and what I really needed to do was accept the pain and fatigue as part of my life now, pace myself, pop some antidepressants and move on (yes really!), I'm loathe to go back and ask what these comments from Dr Albahrani (who I think is the local endo) mean?  I'm not a confrontational person and for all I know they could be a shameless push for his private clinic???   Any insights, advice etc would be so so welcome.  

Thank you for reading!

Welcome O,Mahoney

Do you have the ranges for those results ? They aren't normal as both calcium and PTH are high in range assuming your ranges are similar to mine. The vitd issue is a common endos delaying tactic, they hope by giving us supplements the calcium will normalise, not so. You will also be low in vitd because of your hypothyroidism. Do you have your thyroid results ? Would be interesting to see how well you are medicated, a few of us have both problems and it is indeed difficult to know which disease is causing the symptoms. If you have previous blood results for calcium and PTH you need to get hold of your results so you can see what's going on.
I  think your first step is to talk to your GP and find out what he/she intends doing about your results, a referral to an endo who is experienced in hpth should be the next move and if indicated an ultrasound and mibi scan. Your GP may suggest waiting and watching but this won't help you, it will just delay a diagnosis and leave you feeling ill for longer.
If you can do some homework to find an experienced endo it may well save a wasted appt, many know nothing about PTH problems ! The same is true of surgeons !! If you need help finding endos or surgeons we may have members who can recommend in your area.

Hope that helps a little, others will be along to add their thoughts, do keep asking questions, we are here to help with the PTH puzzles 

Nelly

PS auto correct arghhhhhh please forgive/ignore any stupid mistakes 

Hello Hadleigh, thanks so much for getting back to me.  No I don't have ranges for the calcium or PTH.  This was the first PTH test I've had but previous calcium results have been: 2012: 2.56/adjusted 2.6; Jan 2013: 2.44/adjusted 2.5; Jun 2013:2.47/2.65;July 2013: 2.52/2.62; Aug 2013 2.49/2.6. (didn't realise I'd had so many tests in 2013!) Thyroid results: TSH: 2011: 0.05; 2012: 0.05; 01/2013: 0.03; 6/2013: 0.04; 08/2013: 0.04; Nov 2014: 0.05.  Free Thyroxine: (same periods) 8.6; 8.6; 9.2; 9.2; 10.4; 10.3.
My thyroxine dos is 125 mg per day and I also take 10 mg of T3.  I think the T3 dose suppresses my TSH but I also understand (from a consultation with Dr Gordon Skinner in November 2013) that my free T4 level should be nearer 20.  Other tests which may be helpful are B12 in 2013 was 363 (not tested since) and Serum Ferritin 29 in June 2013 (again not tested since).  I think I will try and see a different Dr as the one I always see is so adamant that all my results are normal.  Thank you again Hadleigh.

Hi O'Mahoney

With blood results, it is helpful if you can also post the ranges.
There are some variations between hospitals, due to the use of different assays.
Also different measurement units are used in some countries.

Assuming that your ranges are similar to mine, your Free T4 should be much higher, so there is something strange going-on.

With the 125mcg dose, I would have expected to see your FT4 nearer to the top of the range, which is probably what Dr Skinner was referring to.

Are you taking your Levothyroxine on its own at least 30 minutes from food, drink and other medication?
If not, then this could be one reason why your FT4 is lower than expected.
Also, some medications can interfere with Levothyroxine.

Other things that have an impact on conversion and absolution of thyroid hormone are Ferritin, Vit D3 and Vit B12 levels.

You appear to have a very low Ferritin - I start to feel worse when mine drops below around 150. This will be reflected in your Free T3 level, so it is essential to include this as part of your routine thyroid tests. T3 is the active thyroid hormone.

FT3 will show if you are converting well and give a better clue about why you are not feeling the effects of your combined T4 and T3 medication, which seems to above what should be needed.

Vitamins D3 and B12 are also important and your thyroid medication will be less effective if these are low.

Edwin

Thanks for getting back to me Admin.  Unfortunately few of the test results give ranges and I feel as if I'm pushing too much asking for results without asking for ranges too.  Yes, take meds 1 hour before anything else in am.  Will ask for Free T3 test but suspect I will have a battle.  After my Dr received Dr Skinner's recommendations she called them gobbledy gook - so disrespectful.  The only reason I am lucky enough to be on T3 is because several years ago I had a lovely Dr who recognised he didn't understand my results and referred me to the local specialist who in turn was old school and looked at my symptoms rather than TSH results.  Sadly both are now retired.  Thanks again for your input.

Hi O'Mahoney,

Welcome to the forum! Unlike Edwin and Nelly I'm not knowledgeable about thyroid issues but in terms of your parathyroid results you definitely dô need to get it checked out by someone who knows about these things. Particularly they need to understand that Calcium and PTH can be 'inappropriately normal'. It seems your doctor doesn't know enough about this. It is extremely common for GPs to be very inexperienced in this area and also full of misconceptions and myths they learnt at medical school. Medical research has moved on, medical practice is still very much behind.

Fortunately, Dr Albahrani sounds like the kind of consultant you need to see. If you struggle with your Dr I think it is a good idea to see a different one or take someone along who can act as an advocate for you. Ask them to refer you to Dr Albahrani so you can discuss these things directly with him. I'm assuming you're in the UK, if so you have every right to ask for a referral on the NHS. 

Let us know how things go. Everyone here has faced all sorts of challenges and are an absolute treasure trove of useful advice and support.

All the best,

Dee

Just a thought, O'Mahoney - and welcome here by the way - but I wonder if the local specialist had registrars who are still at the useful specialist worked?

Just clutching at straws here fore you, but it might be worth checking that.

Where are you in the UK, by the way, in case any of us can recommend enlightened endo's for you?

Best of Wishes, Tigerlily.

Oops - sorry meant "still at the hospital where the useful specialist worked".

I've had surgery but am obvs not yet 100% still!

Tigerlily x

O'Mahoney wrote:Thanks for getting back to me Admin.  Unfortunately few of the test results give ranges and I feel as if I'm pushing too much asking for results without asking for ranges too.  Yes, take meds 1 hour before anything else in am.  Will ask for Free T3 test but suspect I will have a battle.  After my Dr received Dr Skinner's recommendations she called them gobbledy gook - so disrespectful.  The only reason I am lucky enough to be on T3 is because several years ago I had a lovely Dr who recognised he didn't understand my results and referred me to the local specialist who in turn was old school and looked at my symptoms rather than TSH results.  Sadly both are now retired.  Thanks again for your input.

Do you take your Levothyroxine separately from your other meds - at least 30 mins ?

Edwin

Sorry, O'Mahoney - cooking dinner so having thoughts at the stove-top!

I agree entirely with Dee - Dr Albahrani is the one to be referred to. You cannot argue with his informed comments and your GP should not be doing that either. He is the specialist and your GP is certainly not. I would not go and see that GP again if you can see someone else instead.

The old loyalties are having to change with parathyroid disease. So many GPs and even endos are unable to diagnose it and their medical knowledge urgently requires severe revalidation, in my view. In my case, I got stuck with a thyroid endo who knew very little about parathyroid disease (what???), kept telling me I had secondary hyperparathyroidism due to a past Vitamin D deficiency (calcium is low in secondary HPT and not high, as mine was), and would not even refer me on to the parathyroid clinic that I later found out existed at the very same hospital!!

So don't you feel bad about asking for the ranges when you request your blood test results. The results are always given with the range for that item in brackets behind it on the blood test results form. You're only getting half the picture if you don't know the range.

it's especially important for you because I see that your corrected calcium is usually higher than your serum calcium. This usually happens when someone has a low (but not necessarily abnormally low) albumin level. Some calcium is bound by serum albumin and this has to be taken into account if your albumin level is low in its range, for whatever reason. It is the corrected calcium level that endos take note of, and so your higher corrected calcium level should be taken into consideration. Don't let them say to you that your serum calcium level is lower, and so "you're OK".

Ask any question you need to here, we are well versed in all the tricks and excuses - sorry if I sound bitter but I had to wait 2 years for a diagnosis and by then I had 3 enlarged PTH glands that were all hyperplastic. I had surgery just before Christmas to remove these and am just gearing up to get into retribution mode with those who misdiagnosed my case (for two whole years). Grrrrr!

Best of Wishes, and keep us posted on your progress with a diagnosis - Tigerlily x

Thanks all for your time and interest.  Lots of stuff here to read and digest, which I will do tomorrow - but I will definitely call my surgery first thing and request an appointment with a different Dr.  Worryingly I have also noticed on this test results print out that the lab is suggesting my Dr should rule out impaired Glycaemia - which I'm assuming refers to my blood sugar level.  Yes, admin I always take my meds well before anything else including, food,drink and other meds - at least an hour.  Will let you all know how I get on.  Thanks again everyone.

Cheers, O'Mahoney - let us know how it goes from now on.

Tigerlily x

Welcome O'Mahoney! Glad to have you join us. There are several of us here who have multiple endocrine issues. I am hypothyroid, had 2 parathyroid tumors removed 15 months ago, and now I'm dealing with adrenal insufficiency, which we do have under control at present. Yes, some of the symptoms do overlap with these diseases.

It does sound like your levels are elevated enough to indicate hyperparathyroidism. You will need several more tests for a definite diagnosis, and, of course, you probably know your PTH will need to be tested from the same blood draw as the calcium to make the diagnosis.

Good luck with your journey to a diagnosis and surgery!

Audrey