Elevated Parathyroid Hormone Levels and GP prescribing “new” medication I’m already on

[LovedFedAndNoonesDead]

Just a rant really!!

As the thread title says, I have got raised PTH levels (currently 9.4 but has been as high as 13.3 in January 2023) and I’ve received a text this morning to say GP has prescribed me a “new” medication to start as soon as prescription is ready at chemists - however, I’ve been on this medication for over 10 years and, when the previous high PTH level was identified, I discussed with another GP at the surgery that I was already on a higher dose of the medication than they were being told to prescribe me!! He said not to worry and keep taking the meds and they would retest the levels after 3 months.

Since then, I’ve had my levels checked about 4 times and they’ve been running either just above or just below the upper threshold of the acceptable range - between 7.1 and 7.8 with reference range being 1.6-7.2. Because they were so close to the reference range the GP decided not to do anything but said, if they become elevated again, it would be worth investigating the cause.

Instead, now the levels are elevated again (and they’re not the only results out of whack) another GP at the practice has decided to simply write me a prescription for Adcal D3 750mg/200iu x 2 caplets twice daily - which is exactly what I’m already on!! No checking back over previous results or notes, not even a call to speak to me, just a text to say a prescription has been sent to the pharmacy!!

Now had to run the gauntlet of the online total triage system at our surgery to try and get someone at the surgery to discuss this with me!!

Have they done any other tests at all? Checked your calcium level?

With high PtH you need to have your calcium and vitamin d levels checked.

high calcium and PTH and low vitamin d = primary hyperPARAthyroidism which needs treating!

I'm watching with interest having found out recently that I have high calcium, low vit d and high pth. I received an appointment with an endocrinologist yesterday for October and had understood (Google) the usual treatment route was surgery.

Calcium level was done at same time and results were 2.3 and adjusted calcium level was 2.4 both with reference range of 2.2-2.6mmol/L

Vitamin D result is 199nmol/L while on treatment dose of 3,200iu daily (previously my levels have dropped as low as 17nmol/L when not on any medication and maintenance dose of 800iu saw it dropping below 50nmol/L

It sounds as though your GP has assumed that your PTH is elevated due to vitamin D deficiency, but it sounds as though your PTH is still raised despite your normal vitamin D levels now that's been treated.

What led to them testing your PTH to start with? Have they run other tests? Personally, I'm surprised they haven't referred you to Endocrinology. I'd be asking them whether that's an option.

@LovedFedAndNoonesDead there is such a thing called normocalcaemic hyperPARAthyroidism which has the same cause just different labs.

@Gentleness thats correct. If your endo tells you to watch and wait, ask wtf for? It won’t fix itself, surgery is the only solution so let’s just get it done!

Sorry this might be long….

Vitamin D levels have been low historically and I’ve been supplemented for around 12 years (since having a sleeve gastrectomy in 2011); trying to put me on a maintenance dose led to my levels dropping to “requires treatment” range so I’ve been on the current dose for around 8-9 years.

Elevated PTH was initially found on bloods done by endocrinology in January 2023 as part of pathway to having sleeve converted to bypass following diagnosis of bile reflux almost 3 years ago. However it took 3 months for GP to be informed of the results and the recommended treatment (2g calcium supplements a day) which is below the current dose of Adcal D3 I was already on (because of long term steroid treatment for RA) so the GP surgery said not to change anything and just monitored my PTH levels over 4-5 months and they hovered around the upper level of the reference range so nothing was done. Last bloods were done around a year ago.

The most recent blood results have come about due to pre-op assessment ready for the bypass later in the year. I only know about the elevated PTH because I asked for a copy of the results as they weren’t included in the letter and, because my GP send their bloods to a different hospital, they don’t get copies of any tests done at this hospital where I’ll have surgery so I always get copies for myself. In addition to the PTH result, my Hb was low at 117 (reference range 118-148) and my Vit B12 was low at 178 (reference range 190-883) so the hospital wrote and asked GP to do anti-intrinsic factor antibody bloods to exclude PA as a diagnosis. I am having the bloods done on Tuesday and, having spoken to the GP today about the meds situation, he’s now requested repeat PTH, bone profile and FBC as well as the anti-intrinsic factor antibody test.

Other bloods not in reference range were

• globulin - 40 (reference range 20-35)
• enzymatic creatinine - 90 (RR 49-90)
• ferritin - 6.1 (RR 15-200)
• CKD epi GFR 61 (RR 90-99999)
• haematocrit 0.35 (RR 0.36-0.44)
• MCH 26.9 (RR 27.3-32.6)

but nothing has been said about any of those results!l by hospital.

Report back with the calcium, PTH and d results from the same blood draw (they must be done all at once)

The bloods above were all done at the same time 2 weeks ago

• PTH 9.4
• calcium 2.3
• vit D 178

I am booked for repeat bloods on Tuesday and the request is for

• anti-intrinsic factor antibodies
• FBC
• PTH
• bone profile

Well you definitely don’t have secondary hyperpara.

have you been referred for scans at all?

Thanks @DesperateTimesHelp . It sounds like you have experience in this area!
My bloods in April were
Pth 19.9
Calcium 2.65

I've been given no indication of whether this is mild or severe or whatever, other than the fact the referral was put through as "urgent".

That test was a result of a test 3 weeks earlier investigating possible causes of ongoing fatigue, which highlighted a calcium reading of 2.66 and vit D 36.9 nmol/L.

No, nothing from hospital regarding PTH - not even mentioned in letter following on from clinic whereas the low Hb and B12 are specifically mentioned - even the lab report has nothing in the comments section 🤷🏼‍♀️

I presume, if the bloods on Tuesday come back elevated again the GP surgery might do something but, after today”s call where the GP said he had prescribed ferrous sulphate but, according to the system, had prescribed Adcal D3 I don’t hold out a lot of hope in their thoroughness!

@Gentleness there’s no such thing as mild or severe, your levels don’t correlate to your symptoms. But calcium of 3.0 and over requires hospital admission for fluids to bring the levels down.

had my surgery and feeling much better! There’s a really good fb group called hyperPARAthyroid U.K. action4change. They run this https://www.hyperparathyroiduk.com and have excellent links with some amazing surgeons.

@LovedFedAndNoonesDead no idea why you’re prescribed vitamin d when your levels are excellent. Most GPs don’t understand hyperpara. I’d also recommend you join the fb group above.

I’m on it because, if I drop down to maintenance dose (800iu) or stop taking it my levels plummet - they ended up at 17 last time they decided I no longer needed to take it. I also don’t respond well to some formulations such as Lamberts tablets and ended up needing IM injections a couple of times.