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Hyperparathyroidism

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Hyperparathyroidism

Post by Tigerlily on Sat Nov 01, 2014 6:14 pm

This is something I think I mentioned previously in another post - the question of whether parathyroid disease is just an independent disease entity, whether it is a symptom or itself possibly caused by other health issues, or whether it is the precipitating factor for other diseases (like myelofibrosis, in my father's case, as I have just discovered from some research, with Dee's help).

A number of forum members have not achieved the "cure" we all dream of after having PTH adenoma removed - and this was also the case with Simon (who started the original version of this forum) who found that he needed to research more health issues after his operation did not cure him of his troubles.

Something bothers me about the description "hyperparathyroidism". I use the term to describe having a high-in-the-range serum calcium level at the same time as an inappropriately unsupressed PTH level (FP's neat description in his letter to my GP), all caused by the presence of a parathyroid adenoma, as is the case with me. But I have noticed that some medics use the term "hyperparathyroidism" merely to indicate a high PTH level. My own GP said to me last week that they don't treat hyperparathyroidism, meaning I think high levels of parathyroid hormone, so she must have been using the term "hyperparathyroidism" to denote just that. What a minefield this subject truly is!

I am posting this in a new topic, so it doesn't get lost in the string where I first mentioned it, as I feel a lot of forum members might have a view on this.

Love from Tigerlily xxxx

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Re: Hyperparathyroidism

Post by pilipala on Sat Nov 01, 2014 7:30 pm

Hi Tigerlily,

I think this is an interesting topic - one I wish the medical establishment would discuss. Here are my current thoughts.

Ernest Rutherford said 'Physics is the only real science. The rest are just stamp collecting.' Obviously a physicist, and lacking a certain degree of tact, but the point he was making was that biological science is about giving stuff a label and categorising it. Pretty much all medical diagnoses are just changing the name of your symptom to into greek. So technically ok hyperparathyroidism is just having high parathyroid hormone levels. 

I suspect I may prove to be living proof that UK doctors don't treat simple 'hyperparathyroidism' since all I have in terms of blood results is sometimes  high parathyroid hormone levels, which apparently isn't a problem and of course can't possibly account for my symptoms because, as we all know, hyperparathyroidism is assymptomatic, cough, cough cough. (Sorry. Is sarcasm one of the recognised symptoms?). 

I think your definition of HPT is much better but unfortunately not widely understood. Doctors only seem concerned about hypercalcaemia and have a much narrower and misleading definition of pHPT which appears to involve kidney stones. If you don't fit the textbook model they go for the most likely cause of your myriad symptoms - health anxiety.

I found a case study from Japan, which was super interesting to me. This lady had a calcium of 2.33 with high PTH yet they found and removed a lump from her neck which normalised her levels. Details here for those interested.

https://www.jstage.jst.go.jp/article/internalmedicine/52/7/52_52.8496/_pdf

In terms of what causes what. I think HPT causes far more problems and secondary (possibly unhelpful and misleading) diagnoses than doctors will accept. They'd far rather just stick with what they're comfortable with and give your symptoms names - IBS, depression, acid reflux, tachycardia - so they can pretend you are just your average person with poor health. I also worry that because they are so slow to diagnose and treat pHPT, people are left with more long term complications. Marrow fibrosis being a case in point. 

However, there are also some conditions that do increase the likelihood someone will develop pHPT. MEN for example. Other conditions, like thyroid issues, seem to have a strong correlation too. But maybe this just tells us that if your body has some crazy cells you may well have others elsewhere.

I don't expect us ever to know the underlying cause of the majority of pHPT cases. The only research I read in this area suggests that a period of low calcium intake may put people at greater risk. I stress the word 'may, there.  The fact that there's a 3:1 female:male incidence suggests that estrogen could be a player here. But ultimately like many health issues, I believe it is random and not your fault. It happens.

Sorry, bit rambling and possibly missing the point. 

Love to all,

Dee

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Re: Hyperparathyroidism

Post by Tigerlily on Sun Nov 02, 2014 5:51 pm

No, this is all great what you say here, Dee - I'm just digesting it before replying. Takes longer these days to marshall my thoughts!

xx Tigerlily xx

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