help with diagnosis

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Current Symptoms:

Continued head rushes (see below) – 2 or 3 an hour. Worse when under stress or focusing on a task. Can feel a build up to a rush and relief after it passes (1-2 seconds). More frequent at night and even when turning while sleeping.

Night sweats – soaking wet in the middle of night.

Tire easily and sweat doing minor tasks.

A lot more emotional.

Loss of sexual desire – can still perform just no desire to start.

Weight gain – especially around my gut.

Other issues which may or may not be related:

Started waking up with some numbness in left foot and now in right as well. Feet also sore. Hands sore and feel swollen

Just did sleep study and I have sleep apnea

7 bouts of tonsillitis since June – I did have one or 2 bouts a year in the past

Getting cramps in both my leg calves – both in the morning and before going to bed

History of my issue (posted in major online medical forums but received no useful feedback):

I’m a 49 year old male and starting in May this year, I started experiencing some very weird “head rushes” or “head zaps” as I have seen other folks make reference to. I’m now 4 months in and they are continuing - getting worse and more frequent. I actually know exactly when I had the first one – I was on holidays and departing the hotel and I got this head rush that was very sharp and lasted only a few seconds. It felt like someone stuck a needle in my brain full of adrenaline. I could feel the rush come from behind my right eye and it was so strong I got tingling down my entire body. These “rushes” only last a few seconds and don’t interfere with my balance / motor skills nor do I have any cognitive break etc.… they are just very annoying and generate a bit of anxiety.  After that first one, I was experiencing them 4 or 5 times every hour for the next month. For that first month, they generally only occurred when I was in situations that had a bit of anxiety involved – good or bad: i.e. playing a video game and monster jumps out, watching TV and phone rings… initially the sensation was almost pleasurable – almost like a release of sorts. Again, they only last a few seconds and once over, I do get an anxious feeling. Initially, in-between these episodes I felt fine. For the first month I just wrote these off as I must have picked up a bug while on vacation (I was in New York). Few items about me – I have never had any issues with depression or anxiety in the past and take no drugs and am a very moderate drinker. 

I began to get worried the second month as the head rushes started to occur every 10 minutes of so regardless of what I was doing – no anxiety needed. These new head rushes are similar to the more anxiety generated rushes just a bit milder. They also last just a few seconds. In the second and third month of this issue, I got as many as 80 of the milder rushes a day. As of right now (four months in), I get the milder rushes up to 160 a day. I swear I can feel a build up to each rush in the minute before they occur. I still get the “sharper” and more anxiety driven rushes as well but 3 or 4 an hour. These rushes also occur at night and the sharper ones will wake me up. I’m off work at the moment and have very little stress in my life. 

In addition to the head rushes, in month 3 and 4 I started experiencing general fatigue and am now sleeping 12 hour a day. I usually run on my treadmill for an hour and now can only manage 20 minutes before I am exhausted and drenched in sweat. One of the worse problems I am now having related to this is I have no sex drive – never had that issue before. I am also putting on weight. 

After the first month I went to see my Doctor about this – he tested my thyroid and I was a bit low so am now on 50 mg of synthroid. My vitamin B was a bit low as well so am on a B supplement. As my symptoms are so strange and persistent, I had an MRI on my head done to ensure no tumor etc.… The MRI was clean. Doc also suspected Cushing Disease so have done 2 X 24 hour urine cortisol test. In both tests my cortisol was above average. Doc had MRI on my adrenal glands to see if there was a tumor – MRI was clean. Running out of ideas, my GP has now referred me to an Endocrinologist. The Endocrinologist had me do a blood cortisol test – it came up as abnormal but too low cortisol not too high?

I have searched high and low on the Net for folks with my similar symptoms – closest I can find are for folks with antidepressant withdrawal (SSRI) however, I have never been on antidepressants and am not on any drugs. 

Update 6 months in - the head rushes continue to get milder and less frequent. I only get 4 or 5 an hour and some I barely feel. That said, other symptoms remain – very low sex drive and very tired. I can sleep 14 hours straight on weekends. I still feel build-up (anxiety) leading up to a rush. As the rushes are not as strong I feel less relief after a rush – anxiety remains. I continue to put on weight.

New issue: for the past month when I wake up my baby toe on left side has been tingling – not quite asleep but a tingle when I step out of bed, tingle goes away. For the past week the tingle has been getting worse and doesn’t go all away – toe a bit sore? No clue if this has anything to do with my issue? I’ve read about these type of things with diabetes.

Another MRI forcussed on my pituitary came back as “Questionable faint low signal on the right lobe of the adenohypophysis during dynamic contrast enhanced MRI. An ill-defined microadenoma cannot be entirely excluded otherwise nonspecific finding , clinical/laboratory correlation suggested”.

Update 8 month in:

Just did 2 more urine tests - one without acid other 2 results (ABNORMAL) with acid. Of note same tests done 2 months earlier almost exact same results:

CREATININE, 24 HOUR URINE 20.1 REFERENCE RANGE: 6.3 - 22.7 MMOL/D

NORMETANEPHRINES 4.4 ABNORMAL

METANEPHRINES 1.0 NORMAL

Blood tests:

Dec 21 =

Creatinine = 85

Sept 7 =

Cortisol 396 nmol/L G

LH 2.6 IU/L 1.0-9.0 C

FSH 3.6 IU/L 1.0-19.0 C

Prolactin 6 ug/L 3-13 C

Testosterone Total 9.1 nmol/L 6.1-27.1 C VIEW

Testosterone Free Calculated 183 pmol/L 110-660 C VIEW

Testosterone Bioavailable Calculated 4.3 nmol/L 2.8-15.5 C VIEW

SHBG 31 nmol/L 13-89 C VIEW

TSH 3.05 mIU/L 0.34-5.60 C VIEW

FT4 13.6 pmol/L 7.0-17.0 C VIEW

My endocrinologist says not cushings and I have an undefined illness I will likely just have to live with (she is a terrible Doctor). Just wondering if I am headed down the wrong path looking at cushings?

Thanks in advance for any feedback!

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4 Replies

  • Posted

    Hi welcome and lets hope we can help in some way.  We are all Cushings patients and have experience in the symptoms of this disease.  That said each one of us has had some different symptoms that are specific to us.  I am now 4 years since my op but I do get headzaps.  My GP who is brilliant has said that he has only ever heard of these in withdrawal from drugs as you were told.  I do take a lot of prescription drugs but these are something I have to take.  Sometimes when you have had Cushings you may get Diabetes Insipidus which is unlike the other Diabetes NOTHING to do with sugar.  The name means literally a waterfall of urine.  This may be worth checking with your Endo.  You should also ask about a Petrosal Sinus Sampling test.  This helps the surgeon to see exactly if and where the tumour on the Pituitary Gland is as it may not be visible in an MRI.  This test is not pleasant but is vital in directing the surgeon.   The weight gain around the high and middle stomach is classic cushing's.  My symptoms which finally got me a diagnosis were excessive sweating and excess hairiness.  I am a woman so this was awful for me.  I have never been very good on the readings of tests.  After many years of being unwell I was just so glad to get a diagnosis but others on here are good with the figures.  Most G.P. will never see a Cushing's patient so they are a bit wary.  You are lucky that at least yours has referred you to an Endocrinologist, some have to fight for years to get that far.  We all go on this forum at different times of day as some of us like me are in the UK whilst others are in the U.S.  Where are you?  This may make a difference to your tests etc.  We are all here for you.  When I started this Forum (because there was nowhere else that I could meet similar patients)  I always said that we would tell the truth.  We will always say it as it is.  But we will be with you every step of the way.  I am sure that others will reply.  Take care and please let us know how you feel when you have had more answers.  Don't be afraid to ask us anything!

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  • Posted

    Dear headzap

    I'm sorry but after reading your symptoms, even though most Cushings patients have numerous symptoms; and none of us are the same, this does not sound like Cushings. The classic symptoms are a "moonie" face..a round face. Then the buffalo hump..which is between your shoulder blades. The weight gain is rapid..I gained from 110 to 276 lbs in 6 months.

    With your cortisol level not really high and you not having the classic moonie face and buffalo hump I'm leaning toward this is not Cushings. The headzap you are talking about are not associated with Cushing's that I know of. That is one thing I think your drs need to focus on and if there is an undefined tumor I'd want them looking at other places in your body.

    I know how hard this can be as it took 9 years to get my "cyclic" cushings diagnosis.

    The frustrating and erratic symptoms can drive you crazy. The drs not being able to find whats wrong is another nightmare. If you have any questions feel free to ask.

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  • Posted

    Many thanks folks for the feedback - I am in Canada so good access to healthcare - as noted, I can't find anyone with the headzaps I get as part of their cushings symptoms. My GP is really good and we have been looking at other possibilities outside of cushings - just did testing for lime desease and heavy metals.

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  • Posted

    As I said before I do have those headzaps now but not prior to Cushings.  Let us know if you find out what they are caused by, my GP said withdrawal from serious drug abuse which is not relevant to me.  I was tested for Lyme Disease too.  Good luck and let usnow how you get on.
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