Author Topic: Going to see an endocrinologist. Suggestions on what to say?  (Read 3436 times)

Clues

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #20 on: April 16, 2020, 01:53:55 AM »
Nas, yeah I'm a bit dubious. Looking around the net, it seems like it's considered a last resort, where it's even mentioned in the context of MCAD. Muon, you seem to know a lot about MCAD, have you heard about Prednisolone in treatment?

Muon

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #21 on: April 16, 2020, 04:45:00 AM »
There is not a single MC mediator present on the list you gave me other than tryptase and tryptase is useless for MCAS because tryptase often gets inhibited during release mechanisms other than full degranulation. Tryptase correlates with mast cell load (number of MCs) and not with disease activity. I don't like to say this but your professor doesn't seem to be up to date. This is the problem me and many others are facing. There are over 200 different MC mediators and measuring >60 parameters which aren't part of those to probe MC disease activity doesn't make any sense unless these mediators aren't available.

Your professor should read the MCAD thread I made, especially the treatment section.
« Last Edit: April 17, 2020, 05:49:32 AM by Muon »

Clues

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #22 on: April 16, 2020, 05:00:45 AM »
OK, thanks for your assessment Muon! That's a bit disheartening, but on the other hand he does seem to be pretty open to new information.

demografx

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #23 on: April 16, 2020, 05:22:13 PM »
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« Last Edit: April 16, 2020, 06:47:13 PM by demografx »
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Muon

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #24 on: April 17, 2020, 06:26:10 AM »
Correction: I've deleted some lines in my previous comment because the table did not show any examples of glucocorticoids. Glucocorticoids in general are being used but not as a first line drug (side effects). Prednisolone is something they use yes but they use it when other meds fail like you already mentioned.

Methylprednisolone
Prednisone

Also I don't recommend any medicine, I'm just stating that they are being used in the field. And I'm still baffled about the huge test list you provided which contains only a single MC mediator out of >60 parameters. Some mediators, like chromogranin A, should be available. Well, there are at least some vitamins and hormones on there that turn out to be abnormal with some poisers.
« Last Edit: April 17, 2020, 06:34:59 AM by Muon »

Clues

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #25 on: April 17, 2020, 06:54:02 AM »
Muon, I've forwarded the two papers you linked to my endocrinologist, and highlighted the table with MCAD markers. Hopefully he'll give them a proper read before my next appointment in 1.5 weeks. I'm still eagerly awaiting the test results, at least tryptase level should be abnormal if it turns out to be Mastocytosis, right?

Btw, thanks a lot for the info on meds.

Btw #2, I've been in touch with the national Center for Rare Diagnoses here in Norway. They are supposed to be a knowledge centre for a large number of rare diseases including the various mast cell disorders. The lady I spoke with sadly informed me that we basically had only one real MCAD expert in Norway, who retired last year. :( She was actually surprised my current endocrinologist knew anything about MCAD at all. She echoed what you said about prednisolone Muon, that it's not a commonly-used drug, and most patient manage their symptoms with higher-than-normal doses of antihistamines. She also mentioned that a skin biopsy might be useful for detecting Mastocytosis.

Muon

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #26 on: April 17, 2020, 08:15:19 AM »
You could forward the entire thread: https://poiscenter.com/forums/index.php?topic=3236.0

The same papers/tables are hidden in the text as hyperlinks. The thread is basically meant as a compilation, overview and reference for medical practioners who aren't aware of this disease and don't have much time on their hands.

Tryptase can show up in mastocytosis (I'm not aware of the prevalance in terms of % for masto, you will have to look that up) but doesn't play a role in most cases of MCAS, it's being considered a useless marker for MCAS by the scientific community. I don't think it's mastocytosis though. Mastocytosis meaning having more of these MC cells in your body (at a certain density level) whereas in MCAS the amount (and shape) is normal but they only show inappropiate activation. Biopsies for masto are being taken from the bone marrow preferably. Samples can be taken from the skin as well but increased numbers can be isolated to the skin itself hence the name cutaneous mastocystosis.

Although numbers of MCs can be slightly increased in MCAS but nowhere near the numbers of mastocytosis and they tend to be bound to the GI or urinary tract.

Mastocytosis is rare and this is the most widely known MC disorder while Mast Cell Activation Syndrome is common and nobody knows about it.

nanna1

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #27 on: April 17, 2020, 05:30:22 PM »
Here is some POISer MCAS and inflammation data that might help!
  MCAS test
--8 of us show normal trypase (mast cell activation syndrome) levels (itsmel, BluesBrother, nanna1, Vandemolen, Muon, Muon's brother, jakov, Simon66).
--10 of us show normal IgE (allergy) levels (BlueBrother, aswinpras06, certainlypois2, Vandemolen, kurtosis, rjmlr, Yin POIS Study, jakov, Depreux POIS study, kingfisher)
--3 of us show normal histamine levels (nanna1 tested histamine, itsmel and Muon tested histamine and N-methyl-histamine).
--1 of us show low histamine levels (Simon66, tested histamine and N-methyl-histamine)
--1 of us show normal PGD2 levels (muon).

  Inflammation
--3 show normal C reactive protein (CRP) (kingfisher, certainlypois2, BluesBrother, Simon66)
--1 reports high CRP (IronFeather)
--3 show normal ESR (Simon66, nanna1, certainlypois2)
--1 complement system activity (C3a, C4) normal (BluesBrother)
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

Clues

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #28 on: April 18, 2020, 01:16:34 PM »
nanna1 and Muon thank you so much for your input and help.

Got some of my test results back, but not tryptase, annoyingly. I think they had to forward to another lab for that one. Only a few kinda noteworthy things in the results I did get:

S-Albumin   48, reference range 36 - 47.
S-Calcium   2,54, reference range 2,15 - 2,51.
S-Testosterone 10, reference range 8 - 35

My cholesterol was right around the top end of the reference range. (HDL, LDL and total cholesterol.)

I think Albumin and Calcium tend to be high with malabsorption, so not surprising.

Testosterone is right near the bottom of the reference range.

Muon, yes, I thought about forwarding the entire thread. But I want to be careful as it's very easy to be written off as a hypochondriac. I wanted to show him some peer-reviewed research first, as it'll be harder to dismiss. I'll gauge his reaction in the next appointment and give him some more info if he seems receptive.

Muon

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Re: Going to see an endocrinologist. Suggestions on what to say?
« Reply #29 on: April 21, 2020, 11:38:36 AM »
But I want to be careful as it's very easy to be written off as a hypochondriac.

Yes this is a problem: https://youtu.be/82dmZhCBuBo?t=5968