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Hi from newbie and wow

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Hi from newbie and wow

Post by kevsky on Fri Mar 17, 2017 10:46 pm

Hi all,
 I may be a new member of the "club" in all ways.
Started a few weeks ago when my bloods where checked, i'm afraid I am not yet able to
use all the correct terminology so please bear with me.
After constantly seeing my Dr's for various aches pains Hyperparathyroidism was mentioned.
I have started the ball rolling by seeing a Endo privately.
I have today had a ultra sound but nothing showing.
I now have to see the Endo to see whats next but in the meantime
I would be grateful on opinions of my Blood results as below

07/12/2016      PTH 120 ng/L
" "                vit D 27.8
     
then checked again on
02/03/2017    vit D 27.3
                   White cell count  10.6
                   Calcium 2.71
The initial blood tests in December where not picked up on by my GP!
Only when going at the end of February to moan again about how I felt did the GP ask
why I had not seen anyone about the first results! so I was then sent for the second lot of bloods dated
02/03/2017.
Due to delays and as I pay to a scheme that covers initial consultation I saw an Endo privately 
More to this than I have typing power to cover but my GP practice in turmoil with GPs leaving
and All staff also!!
hope this makes sense and if anyone has an opinion on my blood results so far
Kev

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Re: Hi from newbie and wow

Post by Hadleigh on Fri Mar 17, 2017 11:59 pm

Hi Kev and welcome to the forum

Sorry to hear you are on the parathyroid roundabout, it can be a challenge to get a diagnosis and treatment but hopefully your journey won't be to long and stressful.

Do you have the ranges for those results ? your pth and calcium are looking high but seeing where within the range would be useful. Unfortunately scans are not always helpful in identifying the problem parathyroid, the sestamibi scan which will probably be your next move is sometimes more successful than an ultrasound.

Hopefully your Endo is experienced in pth problems and he/she will push on to get things sorted quickly, if/when you get to the surgery stage do make sure the surgeon does a good number of pth surgeries as that's the key to success. Ideally you would want all 4 glands checked so nothing is missed but that's a way off yet.

So I would expect your Endo to want a sestamibi scan next and depending on results make a definite diagnosis and decision on treatment.

Do keep us posted on your progress and shout if you have questions, we will try to help.

Take care
Nelly




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Re: Hi from newbie and wow

Post by kevsky on Sat Mar 18, 2017 1:53 pm

Hi Nelly,
Thanks for the welcome!
I did not realise you required a range I am new to this but do wish to understand as
it would appear on initial searches that we need to be fully aware and take some control.
I was going to post images of my blood results but not sure how so will try to expand
Parathyroid   is 120 ng/L   Range  20.00-75.00ng/L
White cell count   10.6      Range  3.70-10.0010
Calcium          2.71          Range  2.10-2.60
I have been pestering at my GPs for various ailments
aches/pains, headache, lower abdominal pain, fatigue for a couple of
years. I t has been a slog! GPs only want one problem per visit and with all the upset
at the Practice its a nightmare that would take all day to expand on,
needless to say they are unreliable at present
Kev

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Re: Hi from newbie and wow

Post by Hadleigh on Sun Mar 19, 2017 10:09 am

Morning Kev

Ranges are important when looking at test results as they differ depending on where they were done and the equipment used. Also the units may be different, your pth is measured in ng/l 20.00-75.00 but mine is pmol/l and the range is 06-6.9, my husband's range although measured in pmol/l ( as mine is) is 1-9.3, done at different hospitals, so it can be confusing.

I wouldn't worry too much about the white cell count as it can be raised by a number of things, inflammation, stress and so on.

I'm sorry to say that the hard slog and many visits to your GP you had to deal with is pretty typical for most on the forum, generally GPs have little or no experience of parathyroid problems, they see a low vitd (which is how it started with many) and hand out supplements, they don't think past that, when in fact they should at least run a calcium test.

When I was diagnosed with vitd deficiency I was given supplements and sent on my way, luckily I saw my Gastro consultant soon after and he was the one to order more tests. My GP was pretty hopeless so I did my research and went private but even then it was many months before I could convince my private doc that I was right !

We do need to learn everything about hpth so that we can take control, a huge number of doctors are happy to sit back and take the wait and watch approach which does the patient no good at all.

Hopefully your Endo won't give up because your scan was negative or suggest it's secondary hpth due to vitd deficiency, you need to have a sestamibi scan and a referral to a good surgeon, might take a while but you will get there.

Take care
Nelly


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Re: Hi from newbie and wow

Post by Tigerlily on Sat Apr 22, 2017 5:40 pm

Hi Kevsy - I agree with Nelly - the diagnosis of primary hyperparathyroidism is via the blood testing initially: when both calcium and PTH are high in their own ranges at the same time, that is an indication of a parathyroid disorder.

It would be good if you could get another blood test for calcium, parathyroid hormone and vitamin D from the same blood draw, as any endo that you are referred to would need to see these all from the same blood draw.

Whilst waiting to see an endo who, as Nelly says, will probably send you for more scans, have a good look at the information at www.parathyroid.com. It is written for patients in a style that is a bit too upfront for UK medics, so I advise learning from it but not waving it in front of anyone to prove what you know!

Not all endocrinologists are familiar with the details of hyperparathyroidism and are often part of the problem rather than the solution. You could ask your GP to refer you direct to an endocrine surgeon for their opinion. Let us know where you are located and we may be able to suggest one.

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by kevsky on Tue Apr 25, 2017 5:14 pm

Hi Tigerlily,
I have seen an Endo privately as I have a small insurance up to £1500
I had a ultra sound on kidneys and neck and a bone scan that where all clear
(not seen Endo yet about results but the Scan operators gave me nod)
I was also told by my consultant to get a 24hr urine test done through my Dr's to
save a bit of money, this is still ongoing as the Practice Manager is refusing saying I can't mix private with NHS! I was due to see Endo today but cancelled until I get the urine test sorted!
I have had another blood test and I am due to get results tomorrow.
I have realised there is no rushing no matter how crap I feel, I do not want to rush into Surgery but if it definitely turns out to be hyperparathyroidism I will not hesitate.
I will put on my Blood results for further advice.
I am located in Barnsley South Yorkshire so far from the main experts it would seem.
Thanks for taking the time to respond
Kev

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Re: Hi from newbie and wow

Post by Tigerlily on Wed Apr 26, 2017 11:57 am

Cheers, Kev - let us know your results when you get them. Sounds as though you have Benenden Health, which I do. I think your Practice Manager is wrong, but don't worry, you can get the 24-hr urine done later if necessary to confirm blood testing.
Meantime, check out David Chadwick at Nottingham Hospital - he is one of the good guys and does a decent number of parathyroidectomies annually, even in patients with no so high numbers. If Liverpool is closer, check out Robert Hardy there.
Will wait to hear your blood test results.
Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by kevsky on Wed Apr 26, 2017 6:31 pm

Thanks for that Tigerlily, yes it is Benenden. I agree too about the Practice Manager but not to worry as you advised the Consultant has said to go see him next wk and urine can be done later.
Blood results;
PTH    120ng/l       (20-75)
Vitamin D      NORMAL
Calcium adjusted level  2.66  mmol/l     (2.1-2.6)
Full blood count normal

Hope I have done this correctly!
my Vit D normal this time but I have been taking Vit D tablets prescribed initialy by Dr  and advised to keep on for now by Endo.
Calcium only slightly high?
Not sure what happens next, see Endo next Tuesday if there is anything I should be asking him please feel free to comment
Kev

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Re: Hi from newbie and wow

Post by Tigerlily on Wed Apr 26, 2017 7:21 pm

Oh yes, Kev, this defo looks like primary hyperparathyroidism. Even though calcium is only just above the top of the range, if you did not have a parathyroid disorder the PTH would be almost undetectable with that calcium level. In health, if calcium is high then PTH reduces, as they live in an inverse relationship. It is considered inappropriate for both calcium and PTH to be high in their respective ranges from the same blood draw, and indicates a parathyroid disorder.
I would carry on taking the Vitamin D as long as it is not a huge dose.
Hopefully your endo will be able to diagnose you from the blood test results, but if these are the only ones you have he might prefer to see a run of them in order to clinch the diagnosis. I took 4000 iu D3 to get my level up from a very low 16, but my GP agreed to fortnightly blood tests of Ca/PTH/Vit D to check that my calcium did not go too much higher whilst doing so. It did - and peaked at 2.73.
Even though you ask if your calcium is only slightly high, the point is that you want the calcium to stay in your bones and not be moved from the bones into the bloodstream, which is what is happening caused by the high PTH from one or more enlarged and hyperfunctioning PTH glands.
I would be asking him next week either to do regular blood tests for say a month or so, so you can see the climate and not just the weather, as someone neatly put it to me, or to refer you to an experienced endocrine surgeon for their view.
Dashing off to make dinner, but I'll be back with other suggestions in the meantime!
Best of Wishes, Mo.
PS Do have a look at the really useful pages of www.parathyroid.com.

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Re: Hi from newbie and wow

Post by kevsky on Wed Apr 26, 2017 7:51 pm

Your help and support very much appreciated, I am going to study the web site you suggested now! Also I am taking 3200iu D3
Kind Regards
Kev

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Re: Hi from newbie and wow

Post by Admin on Thu Apr 27, 2017 5:09 pm

Just a general comment - I recommend never accepting 'normal' for any blood test results and ensure that you get the actual results.
The results give you the information that enables you to do your own research on optimum levels.

What GPs and Blood labs refer to as 'normal' simply means that your results fall within a reference range.

It does not mean that being anywhere in the reference range it is normal for an individual. Sadly, it does not occur to GPs that 'normal' is a misinterpretation of statistics.

Edwin (Admin)
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Re: Hi from newbie and wow

Post by Tigerlily on Thu Apr 27, 2017 5:56 pm

I agree entirely, Edwin. Half the medics I have met do not even understand the correct relationship for so-called normal levels of PTH and Calcium.

I just wanted to mention to Kev that someone I know recently had a very useful consultation with a Mark Lansdown at St James' Hospital in Leeds. I do not know him and so this is not a recommendation from me, but my friend was very impressed with his knowledge of parathyroid issues, blood chemistry, need for surgery etc.

You might wish to research him, Kev, as he may be a local option.

Best of Wishes to Kev

and Love to Mr-Admin-Edwin and Mrs-Admin-Nelly

from Tigerlily.

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Re: Hi from newbie and wow

Post by kevsky on Thu Apr 27, 2017 7:43 pm

Hi and thanks for those wise words Edwin I will have a closer look at the results and try to understand more, I do understand where you are coming from at 6'3" and 22 stone some ranges more than likely are different I am obviously above average lol.
I have already got Mark Lansdown from the list Tigerlilly the Endo I am seeing is Rob Moisey who practices in West Yorkshire so I did suspect if referred it would be to MarK Lansdown.
I Have also written down  David Chadwick as a choice if I have one.
What a mess all this is but....
Your interest, advice is so welcome and helping me to focus
Kind Regards to all
Kev

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Re: Hi from newbie and wow

Post by kevsky on Thu Apr 27, 2017 7:57 pm


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Re: Hi from newbie and wow

Post by Tigerlily on Thu Apr 27, 2017 8:06 pm

Your daily 3200 iu Vitamin D3 (cholecalciferol) should fix this mild deficiency, Kev.

Good that you had Mark Lansdown in mind, and great that you have David Chadwick as a back stop. He will operate even with negative scans and also when calcium and PTH levels are not hugely high (but high in their ranges at the same time, which is inappropriate). So you seem to have the best of both worlds there.

Keep us posted!

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by kevsky on Thu Apr 27, 2017 10:11 pm

I will Tigerlily
Kind Regards
Kev

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Re: Hi from newbie and wow

Post by kevsky on Tue May 02, 2017 9:00 pm

Hi All,
I have been to see my Endo today and he seems sure it is Primary Hyperparathyroididsm.
My Scans so far are clear and dexa scan was all good
He is sending me for a Sestamibi scan hopefully soon as I explained how crap I feel.
I asked what the next step will be and he said he would send me to see a Surgeon.
He recommended a Surgeon  called dominic martin-hirsch  who operates in the Endos area of Calderdale, he said he would have no hesitation having them operate on him.
If I decided I wanted a different Surgeon does anyone know if I can ask to be referred to a different area?
It is only as I have not seen any data on this Surgeon.
Also does anyone know the cost of Sestamibi scan? I must be close to my insurance limit!!
Kind Regards
Kev

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Re: Hi from newbie and wow

Post by Tigerlily on Thu May 04, 2017 11:59 am

Hi Kevsky

Glad to hear things are progressing well and you have a diagnosis of PHPT.
It's a good enough recommendation from your endo for Mr Martin-Hirsch but he doesn't seem to be on the BAETS list of endocrine surgeons for 2015 (see information section here). He may well be an ENT or general surgeon.

I think Nellie has outlined above the questions to ask of a possible surgeon:
1. How many purely PTH surgeries (not simply "thyroid surgeries") does he do in a year - around 50 per annum is considered a good rate.
2. Will he check the condition of all four glands at surgery (or only remove the one that has shown up on imaging, which could leave behind other malfunctioning glands).
3. Is he able to check the parathyroid hormone level during the actual surgery to be able to be sure that he has removed the only hyperfunctioning gland?

Also a sestamibi is quite expensive and you would probably have to have extra special permission for this from your insurer. Why not ask if this scan be done on the NHS? And also bear in mind that your eventual surgeon might wish to do a sestamibi scan of his own (by his own radiographer and on his own computer system) to guide him at surgery.

Yes, you can ask to be transferred to a different area for a particular surgeon. If you are not far from David Chadwick at Nottingham you could certainly ask for his opinion (and ask him the above questions too!). He is very experienced and easy to talk to. In your position I would invest £250 of my own money to ask his opinion.

Mark Lansdown in Leeds did 25 purely PTH surgeries in 2015. David Chadwick did 42, and my own surgeon Fausto Palazzo at the Hammersmith in London did 155!

Kind Regards, Tigerlily.

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