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Dr. Thomas, MD
Dr. Thomas, MD, Board Certified MD
Category: Endocrinology
Satisfied Customers: 63757
Experience:  Board certified Internal medicine and Integrative medicine. Many years of experience all areas.
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I would like to ask a question please about growth

Customer Question

I would like to ask a question please about growth hormone/IGF-1, others hormones and any relation to pituitary cysts.
Submitted: 4 months ago.
Category: Endocrinology
Customer: replied 4 months ago.
BACKGROUND:
I am male, chronically ill and housebound with severe ME (CFS) and Dysautonomia (POTS) for 26 years since 1991. I am very disabled with these but in the last few years have recent onset Asthma/Allergies/Inflammation and chronic infections. migraines and vertigo (why I had an MRI to rule out brain tumour). My IgE is always over 1000, which is significantly elevated and has been on multiple tests over 12 months.I have a normal BMI (due to multiple allergies from food so lost lots of weight as I can't eat much) with a previously diagnosed small pituitary cyst causing a 'minor mass effect' on MRI with contrast (October 2014). For reasons unexplained, my Testosterone recovered from low to normal within a 6 months timeframe (possibly due to Pregablin pain killer for Trigeminal Neuralgia) which I stopped as the TN reduced. During this time I once had very high Estrogen (2000+ pmol/) which is huge for male, leading to some 'staining' on the side of my face, akin to a mild Melasma pregnant women get. This Estrogen unexplained, returned to normal (although Salivary Estrogen was still elevated), as the Testosterone went up to normal. I was also diagnosed with Gynecomastia, which I've had for years before. I also have Osteoporosis from age 29. (Now 41) and ED (Erectile Dysfunction).1.5 years on....from 2014CURRENT PROBLEM:
I now have elevated IGF-1 (was normal when tested in 2014) and Low 24hr Growth Hormone urine (two tests are low over 1 year). I also now have Low Oestrogen! (tested twice over 2 months).Is it possible my IGF-1 is High, to 'compensate' for the low level of GH? I do have all the symptoms of GH deficiency including Gynecomastia (diagnosed).To me it looks like I have fluctuating hormones, could a 'pituitary cyst' do this, or maybe something like autoimmune pituitary inflammation? (I have a chronic neuroimmune disease (Dysautonomia), inflammation, and infections). I am housebound with severe ME (CFS), severe Autonomic Dysfunction (POTS) and in the last 2 years have developed Trigeminal Neuralia and uncontrolled Allergies/inflammation shortness of breath, and Asthma. I also now have Migraines and chronic dizzyness and vertigo.Please can I have a medically qualified unbiased opinion, primarily how I can have simultaneously:JULY/AUGUST 2016 TEST RESULTS:
1)Low 24hr Urine Growth Hormone @ 2.05 ng/24h + 1.10 ng/24h (Reference range = 2.00 - 10.00 ng/24h).
2)Elevated IGF-1 @ 33.8 nmol/L (Reference range = 11.6 - 31.3 nmol/L).
3) FSH:@ 3.67 IU/L (Reference range = 1.5 - 12.400 IU/L)
4) LH: @ 7.11 IU/L (Reference range = 1.7 - 8.6 IU/L)
+
3)Low 17-Beta Oestrodial @ 18.35 pmol/L (Reference range = 44 - 156 pmol/)
4)Normal Testosterone @ 14.95 nmol/L (Reference range = 7.6 - 31.4 nmol/L)
5)High Normal Sex Hormone Binding Globulin @ 51.52 nmol/L (Reference range = 16.000 - 55.000) nmol/LADDITIONAL INFO:
I should also say my 9am Cortisol is always LOW, (home blood draw) unless I am anxious or stressed. (hospital) (I have agorophobia), then they are normal due to 'stress'. So my adrenal glands work to release cortisol when very anxious, but my brain doesn't seem to work to release cortisol to normal levels when calm. I cannot tolerate ANY stress and also have to have sugar a lot to stop (what feels like) low blood sugar events. I have had this for over 20 years.MY CORE PROBLEM:
I have no one to ask about my strange fluctuating hormones and if they need 'testing' or 'fixing' or even if i need another MRI on my pituitary or the elusive GH stim test no one will allow me to have. Apparently it's very rare in 2 years that pituitary cysts can grow? If so, I don't know what's turned my Estrogen off, if my Testosterone is normal, but the SHBG is high normal and didn't used to be.Thank you.
Expert:  Dr. Thomas, MD replied 4 months ago.

Hello

first of all, what does your endocrinologist tell you?

Customer: replied 4 months ago.
Hello. Dr Thomas.I don't have an endocrinologist and last saw one in 2015 for a Glucagon stimulation test which was 'normal' (for cortisol) but they did NOT measure Growth Hormone. I later got the result and it wasn't normal, it was 460 cortisol and the minimum post Glucagon is meant to be 550 or above *UK levels*. Either way, the Endocrinologist did not allow me to have an appointment to discuss the results, blocked me from any contact with the Hospital. When I complained, the Hospital even took the measure to write to another Hospital to assure me it was impossible my Growth Hormone is low, if the IGF-1 is normal (It's now elevated) when I pointed out it's possible to have adult GH deficiency with normal IGF-1. In other words, they refuse to measure my GH with a stim test, which bizarrely they gave me the stim test, but only measured Cortisol, Glucose, Prolactin, and not GH (Which I believed I was having the test for!!!!).Due to this odd behaviour, the recent test results I listed above I obtained privately in home blood draws, 9am each time. Unfortunately the endocrinologist I last saw, now won't see me, or indeed anyone else associated with the department. The last time I did them I was diagnosed with low testosterone 'Hypogonadotropic hypogonadism' - due to ED and Testosterone of 8.1 (UK levels), then 7.9 (UK levels) which then went back to normal within months for no reason other than stopping Pregablin - a nerve pain killing drug).I was also diagnosed with a pituitary cyst showing a 'minor mass effect' by the radiologist. Since then I have had no contact with any endocrinogist, as I cannot get access to one locally (am housebound, and cannot travel).This is why I wanted to ask a doctors opinion as to my results I listed above and if it's 'OK' to leave my body with low Estradiol E2, elevated IGF-1 (which I didn't have before) and high normal SHBG. Also I wanted to know if the Low Growth Hormone (Urine 24hr) repeated twice over 12 months, was possibly linked to IGF-1 being elevated, considering I am chronically sick with many disabling immunological, neurological, autonomic and cardiovascular symptoms, namely shortness of breath and chronic allergies/asthma, new onset migraines/vertigo which is cyclical in severity.Hope that helps. I can email any test results if it helps to demonstrate authenticity of my problems.Thanks, Ben.
Expert:  Dr. Thomas, MD replied 4 months ago.

OK

I don't think your cyst is causing a problem. An enlarged pituitary would be more likely a problem.

ICF-1 can be elevated for a few reasons:

Over induglence in protein.

Inflammation.

However, GH should be measured several times.

If IGF-1 has not stabilized at a maximum level, then GH is not the reason for an increased IGf-1

I suggest you get a different endocrinologist even if you have to "go private" or that your gp take several GH measurements at different times.

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