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Latest blood results back

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Latest blood results back

Post by pilipala on Thu Jul 17, 2014 12:46 pm

Dear all,

I'm making some progress. My bloods taken last week came back as

Serum Calcium 2.38 (range 2.2 - 2.6)
PTH 10.3 (range 1.6-7.2)
Vitamin D 74.2 (<50 necessary for insufficiency)

So, the good news is they can't blame the high PTH on vit D insufficiency and therefore can't pin a diagnosis of secondary HPT due to low vit D on me. Think the GP was rather confused by how happy I was with that. It would be great to have something so easily corrected by vit D tablets but I was already aware that my bad reaction to vit D tablets excludes that particular diagnosis.

Obviously they are massively confused by the PTH because they don't recognise normocalcaemic pHPT. It's true my serum calcium has never been out of range. The only time I got an 'abnormal' result was when I paid privately to get my ionised calcium checked. Again massive confusion from the doctors anytime I raise the issue of ionised calcium.

Shouldn't really be so pleased but it's a good feeling when you get some proof it's not all in your head.

BTW also making some progress re the 'lobbying for change' ideas but will post a new thread when I've got my head round it.

Here's a menagerie of critters for you all  pig   cat  alien  No  Twisted Evil  albino  elephant  rendeer  Evil or Very Mad  

Love
Dee

pilipala

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Re: Latest blood results back

Post by Tigerlily on Thu Jul 17, 2014 3:24 pm

Great news, Dee - now that's what I'd call normo-calcemic hyperparathyroidism!!

If you have been Vit D deficient, though, the next thing they said to me was that PTH would take some time to come down again after having the Vit D deficiency - 12 months previously.

If your medics are not up to interpreting the blood chemistry, perhaps now is the time to demand a simple, cheap ultrasound of the neck for them to prove to you that there's nothing there that could be causing such a high PTH.

I posted long on this subject this morning but my post disappeared, so the short version will be this:

there seems to be some sort of procedural linkage of sestamibi scan with ultrasound. The two seem to go together for most medics, even though the blood chemistry should make the problem obvious (and US and MIBI shouldn't really be used diagnostically). BUT most GP's and a lot of endo's are not up to interpreting the blood test results. This was the case with me. I was refused a simple US by the Addenbrookes' endo. My GP said he couldn't order a neck US (??); and another endo I saw for a second opinion said that his radiologist colleagues would be very cross with him if he referred me to them for a neck ultrasound on the basis of the blood chemistry that he could not himself interpret as indicating primary HPT.

I finally got a neck US when a locum GP referred me to the local hospital to investigate a swelling that came up on the side of my face, and asked for the whole neck area to be included as my notes showed a lot of talk about pHPT. Without that US I could still be sitting here with a 2cm tumour in my neck.

This links in with your 'lobbying for change' idea, Dee. If more of us were to demand neck ultrasounds when biochemistry is not being correctly interpreted, then perhaps fewer of us would be just waiting for the right person to come along to provide a correct interpretation. I wasn't myself asking for a sestamibi scan. The only one of those I wish to have is immediately prior to surgery if it is deemed necessary. But there seems to be some procedural linkage (NICE, probably) of US with sestamibi. If only a simple US could be done first, then if something showed up the patient would know they were on the right track.

I even contacted some private US companies to pay for my own, as I knew there was something there, but very few of them have the correct US wand or the expertise to offer a neck/throat US.

But we know 3 US experts though this forum: Dr Berman at Addenbrookes (who found mine), another Addenbrooke's Dr whose name Lozza knows, and Aman Boli at the Leicester Royal Infirmary. Just for information.

So, Dee, any ideas yet about your own next step?

Love from Tigerlily xx

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Re: Latest blood results back

Post by pilipala on Thu Jul 17, 2014 3:58 pm

Hi Tigerlily,

Thanks for the heads up about the 'it takes a while for the PTH to come down' line. I strongly suspect they will find some excuse or other to persist in the delayed diagnosis waiting game. What scientific evidence do they have that PTH stays elevated after correcting low vit D? It has a half life of mere minutes in the body which is why 'normal' healthy individuals can keep their calcium in such a tight range. I'll look back through the papers I've got concerning HPT and vit D to see if I can find anything. My feeling is there isn't any scientific basis for that personally.

The GP I'm currently dealing with is a trainee, who I like a lot because she actually goes away and looks stuff up and then she actually calls me back (unheard of at my GP practice). She has said that since PTH is a tricksy test (True. I've been arguing that for months) it might just be a random error and they will retest in a month. Whilst I'd rather they retested now, I can live with that since I should be able to keep my vit D up in the summer. So, hopefully the results will be similar.

I've been thinking about paying privately for a while, especially since I got dumped, sorry, discharged from endo. I was going to go down the bone specialist route since they seem better at identifying signs of normo pHPT than endos, but now I'm thinking I'll seek advice from FP. I know I'll need lots more tests to persuade anyone so I might as well them done under the watchful eye of someone who actually knows something.

Based on everyone else's experiences I know there's still a long road ahead with plenty of potential roadblocks and probably some serious traffic jams along the way, so I'll celebrate the small milestones whilst I can.

Since I feel like I'm following in your footsteps a bit, I'm very grateful for your sat-nav directions.

Hugs and love,

Dee

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Re: Latest blood results back

Post by Tigerlily on Thu Jul 17, 2014 8:05 pm

Hi Dee

And thank you for the bit about the half life of PTH - I'd forgotten about that. It's a great point to add to my collection!!

Trainees are good! I've only got as far as I have because of two (very young) locum GPs are my local practice. They are not hidebound by old medical training and as you say are happy to go away and look things up. What wonderful medical service you can get from them!

Yes, bone specialists route is also an idea. My GP wrote about my case to a colleague of his, a rheumatologist, and he was the first one to say the magic words normo-calcemic HPT, and even gave a good description of it in his letter back. It was that letter that I waved about at Addenbrookes when I demanded a neck US.

Yes, why not invest £250 in seeing FP privately at the Princess Grace Hospital near Baker Street. Show him all your "evidence" and then he'll probably say get your GP to refer you to me at the Hammersmith (he didn't quite say the words, but don't do it privately because it will run away with your money, Mrs Tigerlily, but almost ...).

I got an NHS appointment at the Hammersmith for about 5 weeks after that private consult which is pretty good, time-wise.

His private secretary, Sophie, is very helpful. You will still need a GP referral letter, even if you pay to see him privately (don't ask! no idea!). Let me know if you need email addresses etc., for this first step. You will get a private appointment within 7-10 days. Put your case to him - he knows all about normo-calcemic HPT - and let him tell you his thoughts going forward, as they say.

My sat-nav is at your disposal!!

Love from Tigerlily xx cat  cat  cat  cat  cat  cat  (and a few cats for luck!)

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