Tag: polycythaemia

140 keV Gamma “Ray” Bone Scans…

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My rate of emission of 140 keV photons is now down to lower levels, five radioactive half lives after injection. The concentration has been reduced by biological elution and the radioactivity by decay. It was interesting to read how few suppliers there were for 99mTc. Yesterday, she only injected a few millilitres of tracer.

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I have been reading up and watching videos on the interpretation of bone scans, I can probably note metastatic lesions, depletion in tracer localisation due to prothesis, fractures (old and new), areas of bone formation and depletion. It might be interesting to see what my damaged cervical spine looks like and if my “broken” ribs from rugby can be seen.  Osteophytes are evident on my thoracic spine and near my Titanium pin. The Diffuse Idiopathic Skeletal hyperostosis (DISH) is probably still growing and could localise tracer. {I had a full body scan.} This, if seen, can be cross referenced with an upcoming CT scan.

There could be plenty in my scans for a nuclear medicine professional to discuss with her younger colleagues.

I meet some of the diagnostic criteria for polycythaemia (probably secondary). If it is the malignant form this may interfere with bone cycling in the marrow and could appear in the scintigraphy. There are a few suggestions in the literature to use nuclear medicine to detect this. But it is not common practice.

I guess the single-photon emission computed tomographic (SPECT) images might show something like this below. My hip arthritis is much worse than in the X-ray or CT images below. It does not look like a whole lot of extra knowledge comes from the SPECT data for the hip.

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Dunn’s view of (A) right and (B) left hips of a 48-year-old male patient presenting with left hip pain only. Single-photon emission computed tomographic images shown in (C) anterior and (D) posterior coronal views display more uptake (black arrow) along the superolateral aspect of the acetabular roof on the symptomatic left hip compared with the asymptomatic right hip (white arrow).

Clin Orthop Relat Res. 2008 Dec 17;467(3):676–681

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What might however be interesting is what tips up in the rest of the body scan. The pain in my lower and mid lumbar spine has been explained in different ways by different doctors.  There might be clues as to what is going on.

I guess what I do not want to see is evidence for primary bone cancer or metastatic disease. The main diagnostic differentiation of the latter is a disordered or “random” appearance of tracer localisation. Metastatic disease is incurable and often terminal.

I have joked that I could re-train as a radiographer or a nuclear medicine operator. But you know what they say about old dogs.

It is weird, I feel very up in the air, with little or no idea if/when I will get to see the data. Something which could change the direction of life is hanging ill-defined in the aether. I am in a kind of limbo.

I wonder if people who prescribe scans have ever had to wait and hang like this…

Maybe it should be a compulsory part of training…

Low Parathyroid Hormone – Hypoparathyroidism?

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The results for the three different mutations of HFE gene are in. I don’t have any of these. Which excludes the vast majority of the diagnoses for hereditary haemochromatosis. The footnote from the lab suggests contacting the centre for rare iron related disease in the big university hospital 150 km away. They may just talk with me as an ex-boffin.

I do feel a tad rusty these days, like the tin man my joints could use some oiling.

That means the polycythaemia primary or secondary question is in focus. Is there a malignancy or did my blood just adapt to smoking tabs?

My parathyroid hormone (PTH) is low, it is 26 pg / mL.

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“The iPTH reference interval of a healthy blood donor population was measured as 25.2–109.1 pg/mL (2.7–11.6 pmol/L) at 2.5 and 97.5 distribution percentile. The iPTH reference interval from data stored in the laboratory database was 19.3–112.5 pg/mL (2.0–11.9 pmol/L). Furthermore, 60% of the whole population had prevalently insufficient vitamin D concentration (<30 ng/dL; <75 nmol/L).

Mineri et al., Clinica Chimica Acta Volume 521, October 2021, Pages 1-8.”

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So it is at the rare end of a distribution yet just within the 2.5-97.5 percentile range. It is probably within experimental error out of the range. The error bars on 26 picograms must be big in a small sample!!

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“PTH is secreted primarily by the chief cells of the parathyroid glands. The gene for PTH is located on chromosome 11. It is a polypeptide containing 84 amino acids, which is a prohormone. It has a molecular mass around 9500 Da”

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My results for Calcium and Phosphorus were very normal, this latter statement is a bit weird. Low PTH levels are very rare and usually come with low Calcium levels. That pathway is messed up. Low parathyroid hormone screws with the Calcium concentration and bone turnover.

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Symptoms of hypoparathyroidism

Hypoparathyroidism often starts if glands in your neck are damaged during surgery.

Symptoms include:

  • a tingling or burning sensation in your fingers, toes and face
  • muscle pain, stiffness and spasms

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I have these two but these are caused when Calcium is too low!! So I do not have hypoparathyroidism.

We have another “contradiction” of sorts so the GP has asked advice from an endocrinologist. My guess would be re-test and if the value is still low maybe do something.

I am going to have an Alpha 1 Antitrypsin assay tomorrow which may add a piece to the jigsaw puzzle, concerning my lungs.

I’ll wait to hear from the GP as to what the endocrinologist suggests. It could be more tests, or not.

On the GP front we are probably good until September now…fingers crossed…

The working notion is that whatever it is that may be going on, it is just not manifesting in a sufficiently serious way, yet…

It could just go away or it could develop.

I am a bit of an anomaly, so it is no surprise that my blood results are a tad skewed from the normal.

Taking Stock – Massive Disconnect

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It is one of those things. If two people are interacting and one thinks they are miscommunicating and the other does not, who is accurate? Many assume that they are communicating better than they actually are. People can be oblivious when miscommunication occurs.

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The observable evidence of the “we are above the law” thinking from the USA has just been drilled deep into concrete bunkers in Iran.

“We don’t like the bastards, we can kill their asses as and when. Deals, treaties, international law are only pieces of paper after all!! We have the God given right!! {And the B2 bombers}.”

So now it is overt {again}. It is unclear as to how things go from here. Maybe the global least harm is a petering out.

I am not filled with joy at the prospects of peace and goodwill for all.

I have been noting of late a complete disconnect between how I am and think and, others. Today the orthopaedic surgeon suggested I look at what I might want to do and to use this as a guide as to the when of facing the knife. In my mind I simply adjust to that which I am able to do. I do not get upset and frustrated if I cannot jog round the block or walk 10km. The suggestion washed over me. Why would I even bother to think like that?

This disconnect is even more obvious when watching 24 hours in A&E on the TV. I hear people talking to camera saying that they could not survive without so and so, expressing their catastrophising on hearing that their loved on has gone to A&E, thinking the worst.

Why not simply make your way there and find out what the best guess scenario is from the doctor? What benefit is there in catastrophising?

Clearly, I am weird by comparison.

One could argue that I am indulging in medicine, with all these scans, check-ups and blood tests. I don’t think that any of them are urgent or life critical. I have already accepted that I have pre-cancerous prostate cancer. It seems to me a matter of when not if. The PSA value is going up…

I am due an arse-cancer chimney sweep soon. After that there is a five year holiday for “good behaviour”. It is probably worth getting that done.

Way back in the nineties when they were investigating my polycythaemia, I was a regular visitor to the phlebotomy centre. It being St Thomas’ there were a few Jamaican nurses, some of whom were a good laugh.  I would get bled. They would check my haemoglobin on a regular basis. If my addled memory is correct the results of phlebotomy were to enhance my haemoglobin count over a few months. We ended up dropping it, the bleeding, I was asymptomatic and perhaps the medical student had finished their research project.

In terms of all the tests none of them will change the reality, they may alter the apparent awareness of reality. That is about it. Maybe it is simplest just to drop them all, to let things be. If I don’t drive it, it will fizzle out.

We come back to the whole pain question. I have no idea how others experience pain, nor whether or not I have a high pain threshold. I suspect that I am not at the overly sensitive end.

I can tolerate things without moaning. I am not overly prone to whinging. We could park the idea of hip surgery and revisit it in a years’ time.

Maybe I just need to wait and see what transpires…

It is a very strange disconnect when people imagine some kind of ambition or want. They transfer it on to me. They think I am somehow like them. They expect this. It is impossible to explain how I feel to others, nor begin to convey the difference in wiring, orientation and motivation.

It comes back to this feeling. I make people uncomfortable by interacting therefore it is perhaps better that I do not. I observe this discomfort. I don’t have to inflict myself.

Hmnn…

Secondary Polycythaemia and Medical Buses

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When you wait for a bus isn’t it always the case…

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In the near future I again have a clustering of medical appointments. There are three the week after next. One of these is with an orthopaedic surgeon. Then later I get to see an anaesthetist and then the colonoscopy chimney sweep. After that it is prostate fun and games. Since it was a few years since my “chimney” was last cleaned, I anticipate a few polyps. Which will be excised and sent for biopsy.

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My Haemoglobin levels are at around 17.5 or higher.

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The blood results for HFE mutation have been sent to the GP and only they can give them to me. It is probably safe in my case to give them without narration. I won’t freak out. This is France and protocol is protocol. If negative {normal} then the consultant rheumatologist suggested JAK poly screening to explain the high haemoglobin, polycythaemia (erythrocytosis) results. If HFE mutation positive then I will be giving a pint a week of blood as haemochromatosis induction therapy. Because I have had cancer this blood will probably go down the drain, it is not good for vampires.

“Molecular genetic assays for the detection of the JAK2 V617F (c.1849G>T) and other pathogenetic mutations within JAK2 exon 12 and MPL exon 10 are part of the routine diagnostic workup for patients presenting with erythrocytosis, thrombocytosis or otherwise suspected to have a myeloproliferative neoplasm.”

The default diagnosis of secondary polycythaemia due to historical smoking, early stage hypoxia due to COPD and perhaps early adolescent altitude is the most likely. The JAK 2 screen is for some rare but serious stuff. Myeloproliferative neoplasm is not a nice phrase. It is a dot the Is and cross the Ts test. It needs a specialist prescription.

The blood results have not found a simple, normal, explanation for my osteoporosis.

The causes can be attributed to the Holy Trinty: Fat Fags and Booze. Although I am technically obese, I am also muscular, there is meat and lard. The GP may be able to shed some light on what is going on when they give me the HFE gene results. My calcium and phosphates are normal. They may suggest more tests, specifically liver, looking for fatty / alcoholic liver etc….

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I am not expecting things to be tied up or solved.

Sometimes it is just one of those things.

I guess the most important thing is that there will perhaps be clarity on the replacement hip situation. The if, where and when. Some decisions will need to me made, some preparation needed. There may be wood to chop and a gardener to secure for the time(s) when I am out of action.

Looks like a summer of fun!!!

Genetic Counsellors and Cans of Worms

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I learned a new phrase today “genetic counsellor”. Apparently, at least in Canada, such things exist. I have been recommended to have the HFE gene test to see if I have hereditary haemochromatosis (HH). This for completion. Back in 1994 I visited this high haemoglobin “space” and was bled regularly at St Thomas’. Retrospect suggests that I may have had an ongoing health condition which was missed back then.

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They took an armful each time. 

This HFE mutation would provide a benign explanation for my raised haem and ferritin levels. My ferritin levels have been increasing with time over the last four years. I don’t really have many of the symptoms associated with the genetic disease. It is linked with the less benign polycythaemia. Which would require a wider more substantive gene panel test, so-called molecular oncology. The authorisation for this testing is probably reserved for specialists. Iron overload is not without consequences. It can “cause” cancer or be correlated with it. Medical literature often blurs correlation with cause.

The problem with all this new-fangled gene testing is that it can open a can of worms

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Needless to say, the genetics are complex.

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I would be a mutant of sorts…

The next stages are Iron MRI and/or liver biopsy. The latter does not sound like much fun!!

Liver disease is possible maybe even likely, but I am largely asymptomatic. My enzyme work was ok.

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The next stage of inquiry would be to look for myeloproliferative neoplasms which are rare, not lottery winning rare, but rare enough. Search of JAK 2 and other related things starts increasing the price. JAK 2 can mutate.

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“Mutations in JAK2 have been implicated in polycythemia vera, essential thrombocythemia, and myelofibrosis as well as other myeloproliferative disorders. This mutation (V617F), a change of valine to phenylalanine at the 617 position, appears to render hematopoietic cells more sensitive to growth factors such as erythropoietin and thrombopoietin, because the receptors for these growth factors require JAK2 for signal transduction. JAK2 mutation, when demonstrable, is one of the methods of diagnosing polycythemia vera.”

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The thing is looking closely at most people my age the chances are that you will find something which has gone wrong.

The French sites suggest that some kind of follow up is warranted because of my Iron status.

Not sure what if anything the GP will recommend….

The osteoporosis situation seems simpler to treat with some pills, supplements and vitamins. But could have an Iron cause.

Given that the haemoglobin situation has been ongoing for, perhaps, thirty years it seems unlikely that any new unpleasant things have suddenly taken hold. But the ferritin level has doubled since 2021.

There is part of me that thinks that I just let this all drop…The osteoporosis might have enabled the fracture of my femoral neck six years ago. I have perhaps been living with it since. Simple answer is to not fall over.

A few more pills is no big deal however…

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hereditary haemochromatosis – regularly being bled.

Not HH – Iron MRI / Liver biopsy —

Liver disease – it depends on what – treatments in absence of virus are usually diet and no booze.

Something fancy and esoteric – myeloproliferative neoplasms – massive complex can of worms

The French sites suggest that some kind of follow up is warranted because of my Iron status.

What is inside the can…?

Reasons to be Cheerful – Iron Two and Three

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We heard on the news today that Netanyahu had a colonoscopy this morning. This means that he would have been on an industrial grade laxative protocol last night and this morning. He will have a sore sphincter and maybe, just maybe, he is now less full of shit. He has quite a few comorbidities. He is not renown for joviality, good will or a good sense of humour so the indignity of shitting his entire arse off may not have appealed to him. Laid out on a table with a metre long endoscope up your arse it is hard to be tough, macho and aggressive spouting bellicose propaganda.

Did you know that a single article in the Lancet can cost you forty quid!!

It turns out there is specialist research interest in excess bodily Iron in Rennes, particularly for rare Fe related genetic diseases. We just took the car to the garage and there was an advertising card “Jardin du Fer” so we are back roaming the streets and chanting “any old Iron” like pikeys in a white flatbed truck.

One of the guys from Rennes is a co-author:

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One of the problems and benefits of having been a researcher in a previous incarnation is the ability to scan-read to spot gaps in knowledge and then zoom in, on the off chance there may be a research proposal lurking. The primer paper suggests the following diagnosis flow chart. I am on the far right pathway. All genetic testing is expensive.

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On the basis of this I am possibly due an Iron MRI. Apparently, the presence of Fe changes the T2 nuclear relaxation time and by using various pulse echo sequences one can measure Fe content in the liver. One can also image Fe content relative to the spleen. The latter is more widely used.

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The Fe build up could be genetic, alcohol related or caused by primary or metastatic cancers. The gastroenterologist said they stopped following liver for metastatic disease five years after colon cancer. This being the most likely hang out for colon metastatic disease.

The corporeal symptom of hemochromatosis are given below.

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Hepatomegaly (Enlarged Liver) An enlarged liver is a symptom of underlying disease. It means that your liver is larger than normal. This may happen in response to an infection, advanced liver disease or cancer. Healthcare providers treat an enlarged liver by treating what’s causing it.

I have joint pain and have just added Osteoporosis to the fun list.

The default cause will be ethanolic, followed my smoking with my being a lard-arse a close third.

Maybe I am not special…maybe it really is that simple…

My research instincts say there may be something we are missing and have yet to find out about.

Reasons to be cheerful… Iron two and three.

High Haemoglobin High Ferritin Normal TSAT – More tests?

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Following on from the visit to the rheumatologist I have had my ferritin and transferrin saturation levels tested again today. This rules out hereditary hemochromatosis so no need for HFE genetic testing.

It does not rule out liver disease though my liver enzyme tests were good a month ago. It can be due to chronic inflammation, which I have. It can be due to alcohol misuse but the level has gone up and I am completely on the wagon for four months now. She suggested JAK poly gene screening for myeloproliferative neoplasms (MPNs) to help explain the polycythaemia and to definitively rule out these rare malignancies. The GP said that this was very specialised testing and would need a haematologist to authorise. We will see the wife’s haematologist next week.

As is so often the case one test instead of closing options / diagnoses, opens others. My upcoming sleep apnoea study might add another clue to the mix.

In 1994 I was bled on a regular basis at St Thomas’ hospital to try to address the high haemoglobin levels. They took several “armfuls” … But memory says this increased the haemoglobin levels a few weeks after they pulled the pint.

Maybe I should buy some leeches and have a DIY approach.

I have just found out that I also have mild osteoporosis in the hips which is fairly normal aged related and lower bone density in my spine, osteopenia, slightly more advanced than normal for my age.

Must get a hamster wheel or a challenge reward maze from Amazon…

More questions…

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