Advice on P1NP test please....

[Zadock]

I was diagnosed with osteoporosis of the spine 2 years ago and have (after lots of deliberation) agreed I should start taking alendronic acid. I also have hypothyroidism and when I saw my endocronologist (who happens to also be a osteoporosis specialist) he said I should get a P1NP marker test done before starting treatment and then repeated after 3 months to check that the treatment was working. But my GP doesn't know anything about this test and can't/won't refer me. I could go back to the endo but he wasn't NHS so expensive. I'm keen to know if anyone here in a similar position has succeeded in getting the P1NP test done? Otherwise I'm just using it as an excuse to delay starting treatment! Thanks for your advice.

[ScrumpyPig]

Your endocrinologist is definitely on the ball. I was taking Risedronate for a number of years, with no effect on my DEXA scores. My GP wasn't interested, so I asked for a referral to a consultant, who did a blood test for P1NP and told me the treatment wasn't working. I effectively wasted several years (and NHS funds) taking a useless medication, so I would definitely recommend having the test. Unfortunately GPs often know very little about Osteoporosis, so you may need to be insistent.

[Zadock in reply to ScrumpyPig]

Thank you so much Scrumpy Pig and I’m sorry to hear you experienced that. I’m struggling to find any advice on this for those starting out on treatment so this is helpful. Thank you. My gp has a very helpful attitude but says they only refer patients to see a consultant if they have already experienced fractures.

[SimMartin]

I think this test is essential and sadly seems not to be offered via NHS (or so I seem to find). Much like getting a DEXA seems difficult - well as a man!

I had to take hormones to knock if my prostate cancer growth for 18 months and I asked for a DEXA and then put on alondronate to stop osteoporosis progression- NO ONE mentioned the bone marker blood test !!! And so 15 months later the osteopenia has progressed to osteoporosis and so NOW I am paying for the PIPN and NTX - plus all the usual bone specific blood tests including VIT D and Serum bone–specific alkaline phosphatase etc. (also check for celiac disease just in case)

I would highly recommend you get the test and then you will know in 3-6 months if it’s working - I missed this and have to now try alendronic acid infusion…. But am somewhat ambivalent! Good luck and it’s worth paying if you can’t get GP to provide it

[Zadock in reply to SimMartin]

Oh I’m so sorry for you! And thanks for the advice. I have to get thyroid blood tests done privately. It’s frustrating isn’t it? Who did you use for your tests?

[SimMartin in reply to Zadock]

I was lucky as I paid to see a rheumatologist privately and she suggested a number of tests including thyroid and various bone bloods and my NHS GP agreed to do them - but she didn’t mention the bone markers - I only learnt about them a couple of months ago after being on bisphosphonates for 15monrhs - just had them but NHS didn’t do them so paid privately

[GoldSong in reply to SimMartin]

I’m very sorry to hear what you have been going through and thank you also for the advice, which I will be taking. Finding a lab for these tests is frustrating, Would you be able say where to try? Thank you again.

[HealthELiving]

P1NP is a marker - a good baseline. If your dr. doesn't want to do it, ask an Endo or Rheuma or just pay it yourself. Worth having that. There are also a few other marker tests that are informational as well. Good luck! We certainly have more than our share of challenges with bone health and then physicians who just don't know enough .

[Zadock in reply to HealthELiving]

Thanks for your advice and good wishes. My gp has a helpful attitude but admits she's little knowledge of this. Have you any tips for who offers these tests privately? The only place I've found is expensive and in London and Medichecks (who I use for thyroid tests) don't appear to offer it.

[GoldSong in reply to Zadock]

Like you, I’ve been trying to find a lab in London where I can take these tests. I don’t understand why they are not more easily available and affordable. Could I ask if you have found anywhere. Thank you.

[Zadock in reply to GoldSong]

Not yet. Options so far include YPC Health (clinics in Yorkshire doing private blood tests so local to me and very helpful), and the London option (bloodtestslondon which came up on a Google search). But I honestly don't know if the results would be useful without help from a specialist.....an endocrinologist, or rheumatologist? Next step isto check the difference which I'm sure wiser ones than me in this group may tell me!

[GoldSong in reply to Zadock]

Thank you Zadock and also for the lab info. Yes, that’s true, a specialist is needed - I will have to look into that. My GP was very helpful but admitted she wouldn’t understand these results. An osteoporosis diagnosis is really a very scary minefield. I wish you the best of luck.

[SimMartin in reply to Zadock]

I have had them just now (not back yet) I paid £485 to a private hospital ordered via my private rheumatologist- I have been waiting for an NHS rheumatologist appointment for some time - was due in August but just been cancelled and put back to September. Of course that’s just a first appointment and I’m pretty sure they won’t take my request for bone markers on board and even if they did again the wait may be months - so I just coughed up - I’m lucky as have savings though with having to pay for so much health stuff and disability equipment it’s not exactly an endless pot! I’m a huge supporter of the NHS as it was but it’s now chaotic and broken - quite scary as a polio survivor and disabled person since aged 5 they were fantastic early on my life but …. Well that was then.

[Zadock in reply to SimMartin]

Gosh you have a lot to cope with....Good luck.

[GoldSong in reply to SimMartin]

Thank you SimMartin. I’m sorry to hear what you are going through. I feel this way too about requesting bone markers with NHS and thought, like you, I will just cough up and get them done privately. It seems this is the way things are going now. I wish you the best of luck.

[HealthELiving]

I live in the US, but if you did a search on P1NP tests in UK, I'm sure you can locate centers. Besides P1NP, Alkaline Phosphatase is another test.

[ROSModerator Partner]

Hi Zadock Thanks for your post on Bone Marker tests. We have the following factsheet which may help with any questions you may have on Bone markers (blood and urine tests) and osteoporosis: strwebprdmedia.blob.core.wi... . They are available on the NHS in some centres in the UK. Best Wishes.

[Zadock in reply to ROSModerator]

Thank you for this. Now I can understand why my GP won't or can't refer me for the tests. Hmmmm......

[Cheerleader123]

Thank you for posting your question. I'm sorry to hear about your health situation. I'm in a similar postion, but I have already started treatment with Alendronic acid weekly tablets.

I'm going to take the test you mentioned plus a few more this week and will let you know more, once I've received the results back.

My GP hasn't offered these tests and I'm going to see an endocronologist, who will.

I'm so grateful to you for bringing this enlightening information to the forum, as I wasn't aware of this at all. It's incredible when you think about it! It's a no-brainer that these tests should be done BEFORE, during and after treatment to see if its working.

No-one has talked to me about how we can monitor whether the treatment is effective or not. I also deliberated about commencing treatment and felt railroaded into starting it before I had done enough research.

Good luck in your research for the right teatment and thanks once again for sharing this important piece of the puzzle.

[Zadock in reply to Cheerleader123]

Thank you so much for your reply Cheerleader123. That's interesting to hear you are seeing an endocronologist to get the tests. I think it's likely I will do the same so so I look forward to hearing how you get on. My gp says they can only do an NHS referral for those who have already had fractures or for whom the standard treatment doesn't work. And at the same time their only way of monitoring if it's working is by DEXA scans every 2 or 3 years! Are you arranging a private appointment? I have found a private source locally for the P1NP test but I think it probably needs a specialist's interpretation and as you say there are other useful tests. As with so many health conditions it seems we have to fend for ourselves in many respects. Good luck and thanks for your support.

[Cheerleader123]

You’re welcome Zadock.

I’m not in the U.K so I will be going private. I have had a few fractures which led to the discovery that I had osteoporosis!

I will keep you posted as they are quite quick here with results so as soon as I know, I’ll send you a message.

Thanks for your support too.