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Help with diagnosis - anyone had similar symptoms?

  • bbuckk
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Replied by bbuckk on topic Help with diagnosis - anyone had similar symptoms?

Thanks for the feedback! Much appreciated.
1 year 3 months ago #10411

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Replied by PNA-Tammy on topic Help with diagnosis - anyone had similar symptoms?

I recommend getting a second opinion from another endocrinologist. I am not a medical professional so I do not know what your tests results could mean. If you can find an endocrinologist who specializes in pituitary disorders that would be your best bet. We have a list of specialists here on our website. Take a look and see if there are any in your area. If not one of the specialists on the list may be able to refer you to someone near you.

pituitary.org/medical-resources/physicians

You may need to go to a few doctors. Do some research and find one who has experience treating pituitary disorders. Keep looking for answers. If you would like additional information or have questions feel free to contact us at (805) 499-9973 or I can be reached via email at [email protected]

Take care and let us know if there is anything we can do to help.

Sincerely,
Tammy Mazzella
Pituitary Network Association
1 year 3 months ago #10410

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Replied by bbuckk on topic Help with diagnosis - anyone had similar symptoms?

Many thanks JaneTX for your comments - opens up a few new avenues I will investigate. Thanks again!
1 year 3 months ago #10407

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Replied by JaneTX on topic Help with diagnosis - anyone had similar symptoms?

I looked up Normetanephrine, elevated levels seem to be produced by adrenal phaeochromocytoma tumors. But your adrenals MRI was normal. Then I ran across a paraganglioma which can have similar symptoms as a phaeochromocytoma but can also mess up dopamine, which might explain your brain zaps. Paragangliomas can lurk in parts of your body that haven't been imaged.
www.cancer.gov/types/pheochromocytoma/pa...cytoma-treatment-pdq

On a simpler note, camps, tingling and numbness in feet and legs can be an indication of magnesium deficiency. Serum magnesium tests are useless, RBC magnesium is a better test to see if there is enough magnesium inside cells. Taking a magnesium supplement might help, I take a dose of magnesium glycinate powder when I get a charlie horse in my leg at night, symptoms completely go away after about 20 minutes for me.

Thyroid function cannot be accurately determined unless all 4 hormones are measured, TSH, Free T4, Free T3 and Reverse T3, and a doctor that is able to properly interpret all four results. Your TSH looked okay, but I wasn't familiar with the units for Free T4 (and I'm not good at unit conversion), but it also looked normal, are these values after being on synthroid for at least 2 months or before you started synthroid? T4 is just a storage hormone, it is converted to T3, which is the active version that cells actually use. Free T3 should be at the higher end of normal and Reverse T3 should be low or else hypothyroidism will occur. If you are somehow hyperconverting T4 to T3, your FT4 could look normal and you could have high FT3 which could cause hyperthyroidism symptoms. If FT4 is low but FT3 is normal, adding synthroid may bring FT4 up to normal but cause high FT3. So prescribing synthroid solely on TSH and T4 levels is not correct.

Immune system can also cause weird problems. An emerging medical concept is Mast Cell Activation Syndrome. Mast cells and lymphocytes can infiltrate tissues and organs and cause inflammation which cannot be seen by imaging, only via biopsies, but will impede normal function. A clue for this is lessening of symptoms when taking antihistamines (benedryl) or H1 or H2 blockers (zyrtec, zantac, etc.)

I don't have a lot of respect for endos. Been through 3 already. Many of them focus just on diabetes and weight loss and are not familiar with other parts of the endocrine system, this specialty has been subdivided into subspecialties! Don't let any doctor diss something as being "very rare", I remind them they might just be looking at it!
1 year 3 months ago #10406

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Help with diagnosis - anyone had similar symptoms? was created by bbuckk

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!
1 year 3 months ago #10404

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