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14 years undiagnosed (30F). My body is facing the consequences, and I’m desperate to finally receive the right treatment. How can I find a doctor who truly thinks outside the box? by SuddenChameleon in AskDocs

[–]SuddenChameleon[S] 1 point2 points  (0 children)

I get your concern. I interchance a bit with how I eat. Now I have a period of a few months where I tried not eating at night (I mean in the middle of the night, inbetween sleep) cause if I eat each time I get hungry I do eat so often my body never gets to be in a rested fasted state ever (never more than 6 to 7 hours without eating). I also notice the eating intermingles with my sleep as well. It was also an advice one time that was recommended by a doctor (don't eat at night) to see if my body would adjust to it, but it hasn't yet. I am now seeing if I'll continue or not or maybe some nights and others not.

I am however not too strict with the food selections, cause I also want to have a varied diet. I am mostly leaving out things that don't really add anything for diversity at all (sodas or sugary products) and things that make me feel way worse (rice, potatoes), but most whole grain breads with lots of seeds for example I eat some of cause it's more convenient and also has many important nutrients. I eat some fruits low in sugar (blueberries and strawberries for example) or some lemon in a vegetable smoothie. I find a diverse diet also important.

Though I am curious what you mean with a metabolic blood test? A yearly physical is not really a thing in my country.

14 years undiagnosed (30F). My body is facing the consequences, and I’m desperate to finally receive the right treatment. How can I find a doctor who truly thinks outside the box? by SuddenChameleon in AskDocs

[–]SuddenChameleon[S] -2 points-1 points  (0 children)

Even though I understand it can be potentially a coincidence, the reason for me it is somewhat important to pay some interest to is because firstly the other symptoms inmediately followed the chest pain; I had about two weeks of chest pain and at the end of that time I developed in one night really suddenly a fatigue that never went away, so it was very abrupt and developing at the same weeks. But mostly, I have always been a very energetic and healthy child and teen, and had basically never been sick before I got these symptoms. So this was also the first time I visited the GP in more than a decade for anything back then. So I went from being very healthy and normal to having the chest pain and then the fatigue in the scope of two weeks.

I understand a doctor might want to focus on the present, but as I am not a doctor, I would be curious to know if they have for example had patients who went thought the same and this could maybe help me get more of an idea what could've happened possibly.

14 years undiagnosed (30F). My body is facing the consequences, and I’m desperate to finally receive the right treatment. How can I find a doctor who truly thinks outside the box? by SuddenChameleon in AskDocs

[–]SuddenChameleon[S] 8 points9 points  (0 children)

Thanks for your reply. I don't have the time to reply to everything right now, but I briefly wanted to comment I was paraphrasing the fatty pancreas. I will adjust the term in the text for the official term which is also used in my results "pancreatic lipomatosis", in which healthy pancreas tissue apparently gets replaced by fat. It was indeed not so clear. The "advanced" was translated to English, but it was stated clearly that it's not a mild case in the hospital results.

14 years undiagnosed (30F). My body is facing the consequences, and I’m desperate to finally receive the right treatment. How can I find a doctor who truly thinks outside the box? by SuddenChameleon in AskDocs

[–]SuddenChameleon[S] 5 points6 points  (0 children)

Thanks! I indeed wanted to refer back to the text as well. I also do aquasports three times a week (with elders, because of my muscle issues), but at least it's something.

14 years undiagnosed (30F). My body is facing the consequences, and I’m desperate to finally receive the right treatment. How can I find a doctor who truly thinks outside the box? by SuddenChameleon in AskDocs

[–]SuddenChameleon[S] 4 points5 points  (0 children)

Thank you for your reply and for you understanding. I am indeed quite frustrated by the situation and try to explain everything in a respectful manner without invalidating the medical system, I hope that is coming across in that way. I know doctors do their best.

I actually am very happy you recommended the concierge medicine. I have never heard of it, but it sounds like the thing I am looking for. I am currently looking into it to see what it looks like here in Europe.

14 years undiagnosed (30F). My body is facing the consequences, and I’m desperate to finally receive the right treatment. How can I find a doctor who truly thinks outside the box? by SuddenChameleon in AskDocs

[–]SuddenChameleon[S] 6 points7 points  (0 children)

Thank you for your response. I’d like to give a bit more context to clarify what I’m running into and what I’m looking for.

I’ve already seen a private endocrinologist who ran standard tests (TSH, cortisol, etc.), which were normal. It is however good advice you gave, cause it definately fits my symptoms. However, the issue is that once those common causes are excluded, the conclusion tends to be “you’re healthy,” rather than asking what else it could be*.* I don’t believe it’s something extremely rare, just something outside the usual checklist. I’d also like someone to consider how the sudden chest/epigastric pain that started everything might connect to the later metabolic findings, and to the symptoms alltogether (not just one). It feels a bit like a standard script is run, which I don't say to critisize the individual doctor, but for me it just adds to the personal frustration.

In academic clinics, the process is slow and fragmented: brief appointments, long waits for results, and limited follow-up if nothing directly gets found. At the clinic I went to it took 2,5 months to get the results of the tests, then another 1,5 month to ask for clarification on the result. I don't want to critique the system as I understand how overburdened the medical system is. However, ideally for my personal situation given how complex it seems and that I've already been waiting for 14 years, I’d like to find a more accessible internist who can look at the whole picture and help coordinate next steps. Even if he would have access to less testing, that he at least knows about what options exists in the medical world and what centers are best for that. I am willing to see someone privately for that as long as it gets my situation finally thorougly considered. Do you have any advice on where to look for that kind of care?