How to persue Diagnosis

[Aaron Y]

Hi,

 

Sorry for starting a new topic, I tried to add to my previous topic of Questions to Ask Doctors but somehow couldn't.  Pehaps mods will merge threads. Over the past year I've suffered from numerous strange symptoms which I've been researching.  I think that they are neuroendocrine in nature, most likely due to an underlying SCLC.  In April I had a clear CT scan which seemed to reassure the doctors that it could not be an underlying cancer.  I have still been suffering all the symptoms since then, as a summary some  are gastro related (Gastrin Releasing Peptide), some are water related (ADH hormone), some are cortisol related (central fat gain, weakness in arms, red complexion, sleep disturbance) and finally the non specific symptoms of fatigue, weightloss, headache, thick phlegm.  The update I tried to add was in response to some blood tests I have just had that has made me a bit frustrated!

 

I had some blood tests done the other day and my sodium was down to 131 (ref 135-145).  To me this seems to relate to my thoughts about ADH hormone.  I never managed to get another cortisol reading done.  But my red cell count is now abnormal low 3.88 (ref 4.5  -6.5).  A couple of other readings relating to red blood cells were also abnormal.  I've noticed my platelets drop too, May - 210, Aug - 185, Nov - 150 (ref 150-400).  Frustratingly the doctor tells me that no action is required as these are not clinically significant.  I am still very fatigued and have all the original symptoms.  By researching this disease it seems so clear to me that there is an underlying SCLC secreting hormones.  Like you Tom, I'm ex military (23 years Air Force) and will keep on researching until I am comfortable I understand the full picture.  I think I'm there now in terms of having enough evidence to give my diagnosis some credibility.  I just can't get anyone to listen, sadly I was pleased when some blood results came back abnormal, this was short lived when the doctor said they were not clinically significant enough.  I'm not sure why we have reference ranges if they are meaningless.  I can't see another doctor as I've worked my way through the alternatives and they have just agreed with each other. It pretty much looks like Group Think to me

 

https://en.wikipedia.org/wiki/Groupthink

 

 

It seems that the more doctors appointments that I make, the more justification they have to put me in the neurotic category.  If anyone has any ideas of how I could take this forward, then I'd be really pleased to hear from you.  Thanks for letting me let off some steam in this forum!

 

Aaron

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[CindyA]

Hi Aaron,

 

I am sorry that you are feeling like no one is listening to you. Is there a Nurse Navigator you can talk to or maybe go outside of this treatment center to a different group of doctors? In a different city perhaps?

[Aaron Y]

Thanks for replying Cindy. I have spoken to some nurses, they did listen to me and I think that they understood how I feel, however it all comes back to your General Practitioner (GP, our doctor in the UK), being your primary care provider, is the one that should be referring you for tests and looking after your welfare.  The nurses who work in this field did say that I know my body and as I have these concerns then a good GP would listen.  Unfortunately my medical notes all have hypochondriac written all over them and when they are passed between doctors, who do they believe, me or another fellow medical professional?  While I was in the airforce I barely had an illness.  Since leaving the service this is the first real time I have had to call on the doctors and I have been so disappointed.  What I couldn't believe was the first appointment with them, where I highlighted the fatigue, resulted in a diagnosis of depression.  I did challenge them and think that this is where our relationship broke down a bit.  My point was that depression is also an awful mental health illness and to properly diagnose it and prescribe medication would take more than a 10 minute consultation.  I believe that they chose that route as it is difficult to prove them wrong and it keeps up their patient in, patient out stats.  I'm trying to get another consultation with a private practitioner but don't hold out much hope as they will need to contact my GP to get blood test results etc.  As I said before, I don't know what illness I have, I suspect a lung cancer due to the symptoms but a negative CT in April has ruled this out for the doctors.  They haven't offered an alternative diagnosis so my quest goes on.  thanks for listening

[Denzie]

This site has a clinical trial matching service you might try. If it doesn't cover trials do go to clinicaltrials.gov. Search for liquid biopsies. They look for cancer DNA circulating in the blood or excreted in the urine. This is in a TESTING PHASE ONLY. But it might help.

[Denzie]

Should say trials in the UK. Ooooops.

[Aaron Y]

Thanks for sending this link Denzie.  I do appreciate it.  The only tests I could find were for those who already have a diagnosis, so my quest goes on.  I did see another doctor last week and he doesn't think that the blood test results have any clinical significance, but he will look a wee bit closer at the sodium one.  I can't understand why there is not much concern when a number of them are outside the reference range and to me it is clear that the platelets are on a downward trend. If I didn't feel terrible I would be ok with it. 

I'm always open to suggestions if anyone can think of anything.

 

I hope everyone has a wonderful thanksgiving and best wishes to you.

 

Aaron