CLL & possible hyperparathyroidism

[Vakraas]

I've been happily (more or less) living with CLL since being diagnosed in 2005 just before my 36th birthday. I've been on watch and wait ever since, with no real movement in my WBC or platelet counts. My only symptoms are slightly enlarged lymph nodes in my neck - which haven't budged in size since I first detected them (they were the immediate cause of my making the appointment that led to my original diagnosis 12 1/2 years ago).

Non-CLL-related blood tests at the end of last year raised the possibility of raised levels of parathyroid hormone that could indicate hyperparathyroidism. Occasional tests since have been inconclusive, though the levels remain raised. I'm currently in the middle of the next set of tests that hope to settle this (my next blood test is on the 9th of August - which is a follow up to a test two weeks ago where they didn't get enough blood for solid test results; my poor arm veins are taking a bit of a battering right now).

Obviously I can talk to both my CLL specialist and my GP as need be, and fully plan on doing so once I have a clearer idea of what's going on but - if the new diagnosis turns out to be positive - it's very hard to find any information on the combination of CLL & hyperparathyroidism. The only published literature I can find dates to 1978, which presumably makes it functionally useless given how much the medical landscape's changed in the last 40 years. But this does seem to be a very unusual combination of medical conditions; and it's not as if I need another medical condition that can lead to 'weakness and fatigue' (though, touch wood, no problems with the latter on the CLL front as of this writing).

I don't suppose there's an off chance that anyone here has any experience with this combination?

[cllady01 Former Volunteer]

This site (which you may already know) speaks of primary and secondary hyperthyroidism--dated 2017:

mayoclinic.org/diseases-con...

I would say (but, I am not a doctor) that there most likely is not a connection with CLL--we may have a DX of CLL, but we also have other, non-connected to CLL conditions happening as we live and breathe and age.

Has your Dr. spoken of Vitamin D and/or Calcium levels in your blood?

I searched CLL and Hypercalcemia (a symptom of hyperparathroidism) and found this, 2016 publication which might be instructive to you:

iv.iiarjournals.org/content...

[Vakraas in reply to cllady01]

Thanks clllady01.

For clarity, I didn't mean to imply that there might be a connection; if I do have hyperparathyroidism (really need to come up with a handy abbreviation there), and I stress the conditional, it's almost certainly just a second unrelated medical condition, not something connected with my CLL.

My GP hasn't been very informative or forthcoming so far; I think he's waiting for a conclusive result first. If I do have the additional medical condition with the long and difficult to type name, it would only be primary stage; I have no discernible symptoms.

[cllady01 Former Volunteer in reply to Vakraas]

Your blood is evidently showing too much calcium--and/or not enough Vitamin D.

Read the Mayo article?

[Vakraas in reply to cllady01]

It's my understanding that recent blood tests have detected elevated parathyroid hormone (PTH) levels; my PTH levels are therefore being tracked over time to see if the elevated levels persist or abate. Persistent elevated PTH in turn leads to hypercalcaemia where hyperparathyroidism is present, but it's the elevated PTH that's the immediate cause of my doctor's concern; this suggests that if I do have the condition, it's at a very early stage. I hadn't read the Mayo article specifically, but I'm familiar with its contents from other similar summaries.

In any case, it's not so much the causes of the diagnosis that interest me here; it's more whether there's the off chance - however unlikely - that there's anyone here with the same unusual combination of conditions.

[Jm954 Administrator]

Hi Vakraas,

You might already know this but raised PTH levels can be secondary to Vit D deficiency which most people with CLL seems to have. Vitamin D deficiency lowers blood calcium levels and the body reacts by producing extra parathyroid hormone to stop calcium levels from falling to a very low level It would be worth checking that Vit D is one of the additional tests that they are doing.

More than 95% of patients have an easily removed non-cancerous tumour called an adenoma growing on one of the parathyroid glands, causing it to become overactive.

Let us know what the outcome is.

Best wishes

[Vakraas in reply to Jm954]

That is useful, thank you. When my next results are in (which won't be for a couple of weeks), I'll make sure this is raised if elevated PTH levels continue to be a point of concern.

[Name-1]

I had parathitiroidectomy 2009y.Dg CLL had 2011y.,limphocytosis many years before Dg.CLL . It was Adenoma in one parathyroid glle and after surgical Ca is normal,Ca jonisium and PTH is normal.I think it was Hyperparathiroidism primaria.

[Yelverton]

Thank you. It was only because of my Hyperthyroidism (cured) and subsequent blood tests annually (7 years later) but only picked up last year that CLL was diagnosed. I had not thought to link together. Until I read your post. Very interesting..

[Storygirl]

About five years ago I had some physical problems that seemed to suggest functional hyperparathyroidism. There were a number of blood tests that indicated a deficiency of vitamin D. Prescription of very high dose of vitamin D and x-ray to check bone loss led to improvement in all symptoms.I've had to keep taking high doses of vitamin D because I have to avoid sun due to easily acquired skin cancer. Diagnosis of cll happened to me during May 2017. Good luck to you and hope your problem is as easily resolved!

[fapumpkin]

Hi I have just discovered your post: I was diagnosed with CLL when I was 42 and spent 9 years on watch and wait, in those 9 years my bloods were stable and my only symptom was my enlarged lymph nodes. I was diagnosed with multiple compressed fracture vertebrae and at the same time that I started treatment for my CLL. I now have just had blood test result that has shown that I have raised PTH. I have had 3 annual treatments of Zoledronic acid which have not improved my bone density. I wondered what your stage of treatment is now since you first post and what your present status in regard to hyperparathyroidism?

[Vakraas in reply to fapumpkin]

Hi fapumpkin,

I'm still not receiving any treatment for my CLL - though I had a bad enough winter that at my last consultation I was referred to an immunologist, and additional bloods were taken for further testing. These were considered 'satisfactory', though they showed panhypogammaglobulinaemia; which I understand is not uncommon with CLL patients.

There's been no real development on the hyperparathyroidism front. After a couple of further spaced tests, my doctor stopped arranging further tests. He never called me in to discuss the results at any stage. When I last met my CLL specialist, I specifically mentioned these tests, but no further concern was raised on this front by my specialist's subsequent summary of my CLL consultation test results. From this, it looks like the raised levels of parathyroid hormone back when this was first identified have not caused any further concern with either my doctor or CLL specialist.

[fapumpkin]

forgot to mention, at the start of treatment for CLL I was suffering from Vitamin D deficiency, but my vitamin D levels tested regularly and are good now.

[Madprofessor22]

I just returned today from Tampa Florida and had two Parathyroid tumors removed at Norman Parathyroid Center. Google it. I too have CLL diagnosed Five years ago. Apparently my fatigue began at the same time as the birth of my tumors. Doing my research and advocating for myself. Feel free to tap my brain because I’m already feeling relief. There’s a lot that Drs don’t know and patients generally know less. It doesn’t need to be like this. Askmehowiknow.