Newbie with a high PTH test result!

Hi everyone


I'm a newbie here and I'm very new to the wonderful world of parathyroids!


Along with being hypothyroid and having Hughes Syndrome it now looks like I've got another 'thing', just got a PTH result back;

Serum parathyroid hormone 10.4 pmol/L (1.6 - 7.5 pmol/L)

Corrected serum calcium      2.36 mmol/L (2.2 - 2.6 mmol/L)

Total Vitamin D                  144.2 nmol/L adequate (taking 9000 IU daily under guidance of endo)

25-hydroxyvitamin D3        129.2 nmol/L

25-hydroxyitamin D2           15.0 nmol/L

Phosphate                              0.73 mmol/L (0.8 - 1.5mmol/L)  (taking 6 phosphate sandoz tablets per day)

I'm still having huge issues with joint and muscle pain, lethargy and swelling, all of which temporarily vanished when I was recently on holiday in Australia but is now back with a vengeance!

My GP wants to speak to me and I have a phone consult with my metabolic bone disease specialist soon but if anyone has any thoughts or experiences of all this parathyroid stuff in the meantime I'd be most interested 

Hello Mishka and welcome!
I am sorry to hear you are having parathyroid problems on top of everything else.  I hope you soon get some answers as to what is going on but it looks like your PTH level is definitely out of kilter.  I am not an expert but it seems to me to get a more accurate picture that you need to get as many repeat tests as you can so that you can see trends over time.  Are you seeing an endo as well?  It is rough having all the pains and tiredness and I really sympathise.  This is a lovely group and I am sure others will be along soon as well.
Nice to meet you, 
Sue
P.S.  Are you in the UK and if so whereabouts?  I am in Lincs

Hello Sue and thank you for the welcome.  What a beautiful pic you have, I have 3 cats myself!

I've had thyroid issues since birth and that took 30 years to sort out so I'm more than used to feeling rubbish all the time and this new diagnosis (whatever it might end up being, I still don't know!) is just another one to add to the list 

I see a wonderful endo for my thyroid and she referred me to the metabolic bone specialist for this PTH stuff. I am in the UK, I'm just next door to you in Leicestershire 

Thanks again
Mish

Hello Mishka and welcome

Quiet a few of us have thyroid as well as pth problems so it seems there is a connection somewhere, shame the docs don't recognise it !

Although your pth is high your calcium isn't so possibly not primary hpth, your vitd is good, how long has it been that high ? 9000iu daily is a hefty dose with a vitd being that good, if it's been that high for a while then taking that much is unlikely to raise your calcium which I would guess is what your endo is trying to achieve.

What thyroid meds do you take ? a lot of the thyroid and pth symptoms are the same so its often difficult to tell which is causing the problems, sadly a lot of endos and GP's prefer to keep us undermedicated which leaves us with ongoing symptoms

Do keep us posted on your progress with GP and bone doc, I would query your high dose of vitd with one or other of them.

Nelly

Hi Nelly and thank you for your reply.


Us thyroidy folks really do seem to have all sorts of other things broken too!


I'm really lucky in having a great endo (I had many, many useless ones before I found her!) and she tested my vitamin D. It was at 17 so I was started on the Oxford Protocol and within a few weeks I felt incredible, I had energy, was totally pain free and I had a real zest for life that I have never had before. Sadly that went away pretty quickly but when I was in Aus I had the same feeling return and it was wonderful!


If I take any less than 9000 IU I swell up so much that I can't get my shoes or wedding ring on and my back, shoulders and arms seize up. I am 'only' 44 but some days I can barely get myself out of bed.


I now take 2.5 grains of thyroid S (natural desiccated thyroid) and thyroid wise I feel pretty ok although I do feel like I could do with a slight increase. My iron is still all over the place and any raise so far has sent me hyper.

I was previously on 250mcg  thyroxine for 10 years and even on that high dose I felt very hypo still. The brain fog and overwhelming fatigue is now just about gone but I am still struggling with bones and joints and everything else that seems to be PTH related! 

One GP told me once that I was 'obviously hardcore' because I had to take such high doses of the meds I am on. I'm not sure if that was supposed to be a compliment or not!

I have my phone consultation next week so I will report back, thanks again 

Hi Mishka

You mentioned that your iron is all over the place.
This may give a clue as to why you needed such a high dose of Levothyroxine.

We need a good Ferritin level in order to convert T4 (thyroxine) to T3, which is the active thyroid hormone.
Have you had your Free T3 tested? This will give an indication of whether you have a conversion problem.

You are probably feeling better on NDT because it includes T3, whereas thyroxine does not and it may be that you would benefit from talking T3 (Liothyronine).

Also, a high dose of thyroid hormone replacement can lead to bone problems, among others.

Edwin

Hi Edwin and thanks for the reply

I haven't had free T3 tested as yet but I've just had my consultation and that will be tested along with more calcium tests.  My T3 has always been mid range, T4 mid and TSH suppressed. My specialist isn't too concerned about my low phosphate or high PTH at the moment, I had an FGF23 result back and that was thankfully fine but really I'm no closer to any answers just yet!

Sorry, brain fog, I meant to say I have had my free T3 tested but not reverse T3!

I am not sure if anyone does RT3 testing in the UK.  I am sure that it cannot be done on the NHS.

Hello everyone, hope you're all doing ok.

I've got a bit of an update and would appreciate some advice/any thoughts please.

My PTH levels have fluctuated over the last few months - from 10.5 to 5.3 and today 6.3 pmol/L (range 1.6-7.5pmol/L), along with below range/low calcium and below range phospate and a Dexa scan showing below average whatever they call the measurement in my hip. I'm still taking vitamin D, I had a test the day I returned from a week in Portugal and the result was lower than before I left the UK.

My metabolic bone disease doc says it's nothing to worry about and he's discharged me. He suggested I see a neurologist and my endo doesn't know what to do so I was hoping someone may have any recommendations on what to do next?

I have insurance and am able to travel so going privately if necessary isn't a problem. I'm feeling about 450 at the moment, what with all these aches and pains, constant chest infections/colds and horrible heartburn. My thyroid is pretty stable as is my iron, at least one bit of me is now working properly!

Thanks in advance

Hi Mishka

Sorry we haven't replied to you here - it's been a bit quiet over the summer, but I'm sure people will hon they see your post.

Can you dig out the serum calcium levels that go with your higher PTH levels? That might enable us to see better what is going on. Your symptoms all seem to point to a PTH disorder, and I had the same thing with my Vitamin D being lower when I came back from a hot holiday.

If you have insurance and can get to London then you could consult my surgeon, Mr Fausto Palazzo, privately for his opinion, especially since your endo is at a loss to tell what is happening. At least that way you would have an expert opinion very soon from someone who does know about PTH disorders. His secretary is Sophie on 020 7100 8086 and she is very helpful. You would need to get all your blood test results together though and a referral letter from your endo (should be easy if they cannot help you themselves!). Mr Palazzo sees private patients at The Princess Grace Hospital opposite Madame Tussauds (Baker St Tube).

Let me know if I can help you further with this. It sounds though an expert eye on your case is what is needed now as your quality of life is being affected.

Best of Wishes, Tigerlily xx

Hi Tigerlily and thank you so much for the info, much appreciated!

I don't have my test results to hand (I'm away with work at the moment) but from memory my serum calcium hovers around 2.1-2.3 ish. I think 2.3 was when the PTH was at 10.5

I am so used to being in this pain so I try to ignore it but it is getting to the stage where it's costing me a fortune in physio and my upfront gym fees are not being used. Everyday chores like loading the washing machine or even washing my hair are getting too much for me - my arms feel so weak and my back feels like it's in constant spasm!

I will definitely contact Mr Palazzo, thank you again and best wishes to you

My pleasure, Mishka - I hope you are able to get some answers. I agree that the extreme tiredness is really hard to cope with.

Those calcium levels are quite low normal, like you said. It might be a good idea to check out what the other causes of high PTH levels could be. I can't remember offhand what they are, but Mr Palazzo will be able to send you in the right direction, I'm sure.

Let us know how you get on from here.

Best of Wishes, Tigerlily xx

Mishka your calcium is very low, how is your phosphate level now ? It does look like these 2 could be the problem, have you had renal function checked lately ?

I wonder if Mr FP is the right one to see as he is a surgeon, I think you might be better seeing a good Endo. Hopefully someone on here can recommend one.

Nelly

Hi again, Mishka - I've had a few more thoughts since yesterday, and it seems to me (although I'm no medic) that you may have a problem of calcium imbalance connected with an inability to produce active Vitamin D within the body/kidneys. This could be why you need such a high supplementation level of Vit D. Are you being given vitamin D3 (cholecalciferol) by the way? (And not D2.)

Your endo and Metabolic Bone Disease consultant must have thought of this, and I'm sure you have had your kidney function checked throughout all your dealings with them. Would that be right?

Another forum member had a problem with calcium balance and I recall that Mr Palazzo recommended that they consult an endo Dr James Ahlquist who has a special interest in calcium metabolism. He works out of Southend Hospital:

http://www.spirehealthcare.com/wellesley/our-facilities-treatments-and-consultants/our-consultants/dr-j-a-ahlquist/

- but also from a London base. As Mr Palazzo is an endocrine surgeon, but not an endocrinologist, it might be an idea to get Dr Ahlquist's take on your case initially, especially since Mr Palazzo did recommend him to someone else with a calcium problem that needed clarifying.

I also recall Mr Palazzo saying to me that the accommodation of Ca and PTH (that is, the fact that they normally live an inverse relationship) only comes into play with adequate water intake and a good Vitamin D level. Your low calcium levels paired with higher PTH levels would seem to be in the right relationship, but the fact that you have so many bone/musculo-skeletal symptoms and need such a high level of Vitamin D are the things that don't fit with this.

I had a (very fraught!) discussion with the PTH endo at Addenbrookes recently (PM me if anyone would like their name!) who told me that as long as the calcium was "within the normal range" they didn't care if the PTH was 9, 12 or 15. I was also told that being monitored in their PTH clinic meant one annual appointment and one annual measurement of Ca/ Vit D and PTH, which is hardly going to show any trend in calcium levels. 

This did make me think a bit, though, as consistently high PTH levels can be a risk factor for heart disease.

Nelly's post has just come in whilst I'm typing this, and she seems to agree with my revised thoughts that another endo (maybe Dr James Ahlquist?) might be a better way forward, although if you have already made an appointment with Mr Palazzo he will also be able to point you in the right direction. 

I think Jasmine on the forum was referred to a Dr James Cox at St Mary's Paddington whom she found very helpful in these matters (Jasmine: correct me if I'm wrong here about his name or where he works from).

Let us know how things progress.

Best of Wishes, Tigerlily xx

Hadleigh wrote:Mishka your calcium is very low, how is your phosphate level now ? It does look like these 2 could be the problem, have you had renal function checked lately ?

I wonder if Mr FP is the right one to see as he is a surgeon, I think you might be better seeing a good Endo. Hopefully someone on here can recommend one.

Nelly

Hi PTH and inability to process Vit D are associated with impaired renal function, so it is probably worth asking your GP for a renal blood test if you haven't already had one recently.
Renal patients are prescribed Alfacalcidol, which is a Vit D analogue.  This gives the body Vit D without needing any processing in the kidneys.

Edwin

Hi Mishka4,

I'd been thinking along the same lines as Tigerlily. FP's endo friend seems a good person to try first.

I'm sure you must have already been along the 'conditions that impair calcium absorption' route - e.g. Celiac, Crohn's, UC etc cos that's essentially where you are on the calcium/PTH graph - low calcium, high PTH. If you feel you do want more investigation into that then perhaps finding a great gastro consultant will be better than an endo.

I'm afraid I haven't had good experience of either so don't have any recommendations.

Hopefully someone else has though.

Big hugs,
Dee
xxx

Thank you again for everyone's replies, I hadn't yet made an appointment so I will check out  Dr Ahlquist.

I had a load of tests done in April, I'm not exactly sure what they were for or what they meant but I was told that my kidneys, liver and everything else was fine. I've got about 5 pages of blood results and these were the urine tests I had (not sure if these are relevant but they are much quicker to type out!):

Chem urine LTG queue (DKR4955) A  normal

Urine phosphate  14.0 mmol/L

volume  2665 ml/24 hr

24 hr urine phosphate  37.3 mmol/24hr  (15.00 - 50.00 mmol/24hr)


Volume (DKR4955) A Normal  2321 ml/24hr

urine creatinine  (DKR4955) A Normal  5.5 mmol/L

24 hour urine creatinine (DKR4955) A normal  12.8 nmol/24hr  (5.00 - 17.00 mmol/24hr)

dopamine  (DKR4955) A normal  2.3 umol/24hr  (<3.00 umol/24hr)

adrenaline  (DKR4955) A normal  20 nmol/24hr  (<200.00 nmol/24hr

noradrenaline (DKR4955) A normal  310 nmol/24hr  (<700.00 nmol/24hr)

If there are any tests that would give any further clues please let me know and I'll look through and see if I can find them!

Since being taken off the phosphate sandoz my levels have gone further down to 0.63. I never got into range (0.8 - 1.5mmol/L) My specialist said because it wasn't raising my levels and was giving me a poorly tummy I should come off it. And after a few days of coming off it back came the pain with a vengenance!

Thank you again everyone, I really do appreciate your input

pilipala wrote:Hi Mishka4,

I'd been thinking along the same lines as Tigerlily. FP's endo friend seems a good person to try first.

I'm sure you must have already been along the 'conditions that impair calcium absorption' route - e.g. Celiac, Crohn's, UC etc cos that's essentially where you are on the calcium/PTH graph - low calcium, high PTH. If you feel you do want more investigation into that then perhaps finding a great gastro consultant will be better than an endo.

I'm afraid I haven't had good experience of either so don't have any recommendations.

Hopefully someone else has though.

Big hugs,
Dee
xxx

Hi Dee, I missed your message while I was typing, sorry!

All the results for celiac etc. were fine, no problems there apparently. I've had many bad endo experiences too, as have many other people I know! I do shudder a bit when the word is mentioned, I just imagine that they want to fiddle with my thyroid and take me off my NDT! I will look into gastro's too, thank you again

Know what you mean, Mishka, I can understand your reticence about changing endo's when you've actually found one who will supply a prescription for NDT!!

Good luck and keep us posted with your progress.

Tigerlily xx

Thanks Tigerlily, it took me a very long time to find her!

I just had an email from my metabolic bone man, I asked for his thoughts on my fluctuating PTH levels and his response was,

'you are in range'.

As a thyroid patient those words send a shiver down my spine, being in range doesn't mean I am better! He also said I don't have a vitamin D deficiency as, again, I am in range. Surely I'm only in range because I'm now taking vitamin D?!

He suggests I see a neurologist - does anyone have any thoughts on this please? Would a neurologist be a better option than seeing Dr Ahlquist? Sorry if my questions are noob-ish but I find the whole issue very confusing!

Hi Mishka

From your posts above, it seems like a "new eye" on your situation might be a good idea, like a trip to someone with a specialist interest in calcium metabolism/PTH/thyroid disorders. In my experience, when someone says "see a neurologist" it usually means they are out of options to help you themselves, but I have recently been reading about fibromyalgia (another diagnosis no-one wants!) and it would appear that the nerves are significantly involved when it comes to musculo-skeletal pain. It might seem obvious to others, but I wasn't aware of the real extent of this.

Can you dig out your actual serum calcium measurement for the adjusted calcium of 2.36 and the albumin level that went along with it and the PTH level of 10.4 ?

On the face of these results, it would be easy to say that your corrected calcium is normal and your PTH only just out of range (I'm not saying this, though, because your PTH is one third over the top of the range in this reading). If you have an albumin level above 40, depending on the lab cut-off point, then your serum calcium will have been routinely "corrected" downwards, so your actual serum calcium could have been 2.46 or more. A serum calcium of 2.46 paired with a PTH of 10.4 is quite suspicious for a PTH disorder (when my PTH peaked at 12.77, the serum calcium from the same blood draw was "only" 2.45). 

This matter of routinely "correcting" serum calcium levels downwards when albumin is high is a really sticky issue as far as I'm concerned, as I always have a high albumin (sometimes around 50 - perhaps due to dehydration). My serum calcium is routinely corrected downwards because of this, and everyone says, "Ha! See! your calcium is not high-in-the-range at all, now that we have corrected it downwards for you!! Ta da!" 

It's usually the formula devised by one F. Payne that is used to "correct" serum calcium. He said you had to do it when albumin was low, but to be very careful "correcting" the serum calcium downwards when albumin is high. It's a long story to explain - I did some research on it, though, and it's fascinating. A French paper has been published that indicates that when albumin is high, serum calcium should actually be corrected upwards to get a true picture of the amount on calcium (in the absence of an ionised calcium test, that we don't seem to be able to obtain easily in this country).

I will be posting on this next issue shortly but, as I have always understood things PTH-related, serum calcium and parathyroid hormone live in an inverse relationship if the body is working normally. So if PTH is high, then serum calcium should be low or actually undetectable. Mr Palazzo has a very neat way of describing elevated PTH levels paired with high-in-the-range serum calcium as "inappropriately unsupressed" PTH. I know I've mentioned this before here, but this description caught my imagination as an effective way of describing the situation, if you can get your head around the double negative.

So, see if you can dig out the actual serum calcium and the albumin from the same blood draw as the PTH of 10.4, Mischka, as this might give a bit more information, from which you will be able to decide whether to ask for a second opinion or not, and of whom.

Talk again soon - Love from Tigerlily xx

Where are you located, by the way? Other forum members might know useful contacts in your area.

Thank you again Tigerlily, you have explained things to me so clearly that I am starting to get my head around all of this now!

I didn't have any other bloods done when the  PTH was 10.4 pmol/L in March 2015, the ones I had done in January 2015 were

serum albumin                   44g/L            (35.00 - 50.00g/L)

corrected serum calcium     2.30mmol/L   (2.20 - 2.6mmol/L)

serum inorganic phosphate  0.65mmol/L  (0.80 - 1.50mmol/L) (taking 6 x phospate sandoz daily at this stage!)


April 2015

PTH                                        5.3pmol/L

serum albumin                        47g/L

corrected serum calcium           2.35mmol/L

serum inorganic phosphate       0.71mmol/L  



The latest results with a PTH of 6.3pmol/L

serum albumin                        45g/L

corrected serum calcium          2.34mmol/L

serum inorganic phosphate      0.63mmol/L  


I agree that a fresh pair of eyes is needed here, I am in Leicestershire but I work all around the country so travelling isn't an issue for me.


Thank you again for your thoughts

Hi Mishka

Your phosphates are quite low which is also indicative of a PTH disorder, but you do have other issues going on which might complicate the picture. I thought my phosphates were low at around 0.80, but they have risen to 1.22 since surgery.

I think I may have guessed right about your albumin being high-ish. I think the serum calcium levels will have been corrected downwards with those albumin levels, so the uncorrected serum calciums would have been 2.5+, so paired with a PTH of 5.3, even though that is not above the PTH range, I think it would be regarded as "inappropriately unsupressed", and so indicative of a possible PTH issue.

As you are in Leicestershire (I lived in Rugby for 23 years and enjoyed a trip to Leicester market! I'm in Suffolk now.) you are very close to Jasmine's endo, Dr Miles Levy. I have seen him as well, and I believe he knows what he talking about when it comes to PTH problems and other endo stuff. He works out of Leicester Royal Infirmary, and Spire Health on the road out of Leicester to Rugby (Groby?). He himself suggested Mr Palazzo as a surgeon to me, so there is a good link for the future.

He also has a wonderful ultrasound guy that can find a PTH needle in a haystack, apparently, as long as you don't mind being turned upside down in the chair to find it! Jasmine will be able to tell this story as she had an uproarious US with him.

So, it looks as though that new pair of eyes could be right on your doorstep, Mishka. His private secretary is Lesley Sewart on 0116 270 6841 and lesley@holmfieldcr.co.uk. If you current endo admits that she is doesn't know what to do next, perhaps she will refer you to Dr Levy for a second opinion. With all your other issues, I think you need the view of someone experienced in these matters, and he is an endocrine consultant, I believe. I think he might be able to provide some answers for you and will not be phased by your other quite complicated health issues.

Let us know how you take this forward, whichever way you choose to do it.

Love from Tigerlily xx

Thank you again, I really do appreciate your help - I have heard of Dr Levy before and with him being so close he sounds as if he could be 'the one'!

I'll keep the thread updated, and again to everyone that has replied thank you