Low Hormone Levels - what does it mean?

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sickkid01
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/19/2008 1:44 AM (GMT -7)   
Male, 22 years old

I have been sick for over 7 years and slowly gotten worse each year. Been bounced back and forth between Neurologists and Endocrinologists. Each one refers me to the other saying it must be the other. Last week had a Neuro run many MRI's (pituitary, brain, sinus) and a Endocrine doc run many hormone blood tests. MRI's were normal, but blood tests found low levels of:

Testosterone, Aldosterone, DHEA-Sulfate, FSH, LH

according to report levels on most of these are less than half of something that could even been considered in normal range. Does this point to something? Is there a special type of Endocrinologist I should see now? or another type of doctor entirely?

My symptoms are: chronic over-heating, headache, fatique, light-headed, dizzy, shaky, neck pain, stomach pain, low sex drive, join/muscle pain/weekness, dehydration, frequent urination

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 6706
   Posted 6/19/2008 2:41 AM (GMT -7)   
Welcome sickK and sorry to see someone so young having so many problems.

Did you go over this report with your Doc or are you reading it yourself? First I want to say as a male several of these are suppose to be low or below or not present at all as you are male and therefore have no use of them.

Example, FSH is the follicle stimulating hormone and this is simply as I can get it a hormone that directly plays a part in the menstrual cycle and the triggers the female body to release an egg each month.

So as you can see this isnt one you would need to be worried about being low or none and I am not exactly familiar with how much if any would be present in the male.

I have to assume that your reading this yourself and have not discussed it with your treating Doc and if that is not the case shame on the Doc for not making himself clear or taking the time to clarify those low levels for you.

In other words dont panic yet and worry yourself over what may not be anything to worry over yet.

A big welcome to the forum though and hope you get lots of help and support as I am sure you will. This is a nice place to land and sit for a spell and an even better place to seek advice or just meet a new friend.
NVR
 
Bilateral knee replacements,spondylosis of L-3,4,5 and S-1, osteoarthritis,premenopausal migraines.
 
Meds: Methadone,xanax,zanaflex,maxide,prempro,K+,indocin,lexapro,neurontin(coming off) lyrica(going onto)
 
 


sickkid01
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/19/2008 5:03 AM (GMT -7)   
yes I am reading this myself. Got the lab report. I am seeing a research Endocrinologist as no one was even certain which specialty to concentrate on. He only sees patients once a week and doesn't have a direct number. takes a few weeks to respond as doesn't have much time for each patient. Now that it looks like we have a path to follow I wanted to find an endocrine doctor to concentrate fully on my case.

On the lab report it lists each chemical with the result and what is considered normal for each age group. Those I mentioned were all way out of range. They actually found the Testosterone deficiency about 6 months ago. I have been taking medication for it, which helped but no where near fixed all the problems. It's why I asked them to check more hormone levels.

I looked up FSH [ http://women.webmd.com/follicle-stimulating-hormone ] and it says for Men it effects your sperm count and your FSH levels should remain constant. I found a blood test from 2 years ago which showed my FSH and Aldosterone being double what they are now, which at that time was on the low side but almost in range. Also looks like Cortisol is currently on the low side

To give you an idea of what I've been through, I've seen about a dozen doctors and here are the main ones:

* local neurologist - said I have migraines, after no meds helped referred to migraine specialist
* migraine specialist - tried many more meds and had no luck
* general practitioner - ran tests, tried more meds with no luck. referred me to Endocrinologist
* Endocrinologist - referred me to Mayo Clinic in Arizona (Neurology Department)
* Mayo - found gastritis in stomach and said I have Chronic Migraines. prescribed more useless meds
for a while stopped going to doctors and just hoped it would get better on it's own. after a year many more symptoms presented then found Research Endocrinologist.
* Research Endocrinologist - found Testosterone deficiency. after months of taking meds still very sick, so found new general doctor as he moves very slow
* new GP - after some tests realized this was beyond his experience and referred me to UCLA Neurology
* UCLA Neurologist - requested many MRI's. When all came back normal he said it's most likely not a Neurological issue, probably Endocrine

Now have these new blood test results. Low on (Testosterone, Aldosterone, DHEA-Sulfate, FSH, LH, Cortisol). I looked them all up and seems they all have to do with Pituitary or Adrenal gland. Some things they are probably important:

* I didn't start puberty until I was 17
* I had major surgery once in my life. At age 11 on my testicles after being hit hard (found torsed appendix testes). Wondering if its possible something was messed up as my hormone levels are all off

I'm not worrying about this. quite the opposite. I spend most of my life sick in Bed. I am praying we are on the right track.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/19/2008 10:01 AM (GMT -7)   
Hi, Sick,
Welcome to the forum. Wow, you sure have been to about every specialist in the book, and more than one teaching hospital. I know it's frustrating, but sometimes it takes a long, long time to find answer, and sadly, sometimes there are no clear answers even for the docs.

I'm not a doc but it would seem that your injry at age 11 might very well have some relationship to all of this. Since you've been to so many places, when you see the research endo. I would have a list of questions for him/her which includes a "big picture" look at all the docs and hospitals you've been to, and that helps you to see in light of all you've learned so far, what possibilities are left. Ask where you can legitimately read about anyone else with your situation, so you can learn (it sounds like you're doing a lot of that), but you may have to ask some hard questions about your prognosis. I'm guessing you've already been on hormone replacement of some sort, but it's not working. How long have you been bedridden? What symptoms keep you in bed? I'd try to deal with the symptoms if there's not an actual "cure" (as there's not for most of us with chronic pain), and see if you can get some of your life back.

We're not docs, but are here for support.

PaLady

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 6/19/2008 5:05 PM (GMT -7)   
sounds like a strange combination between "excessive opiate" and "insufficient opiate"/withdrawal effects......you been taking opiate pain medications for very long, or at all?
Conditions: Reactive Arthralgia/Reactive Constellation, Chronic Pelvic Pain Syndrome, Sacroiliitis, Costochondritis, widespread Tendonitis, severe back pain & spasms with numerous spinal problems, barely able to type anymore due to severe full-body runaway inflammation, and on and on. Typical daily pain levels exceed 8.5(!)

Medications: Methadone, Dilaudid, Oxycodone, Marinol, Cesamet, Lidocaine Patches, Flexeril, Zanaflex, Soma, Desipramine; many herbs & supplements.


Previous medications: Oxycontin, Opana, Fentanyl patches, Kadian, Avinza, MS Contin, Lortab, OxyIR, Baclofen, Testosterone (oral, patches, gel), Cymbalta, Lyrica, Neurontin, Amitryptyline, every NSAID known to man, Prednisone....and many, MANY more.


sickkid01
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/19/2008 8:17 PM (GMT -7)   
thanks for all the support!

1) For over a year I stopped all medications and any doctors hoping it would improve on its own, but rapidly deteriorated. Pain meds like Darvocet or Loritab take the edge off, but I build of a tolerance very quickly so I only take them when I am really doing bad.

2) Worst symptoms are chronic headaches, stomach ache, and no energy. My entire body always feels completely fatigued and the pain never subsides even for a minute. Also, I can't handle anything above 70 degrees fahrenheit for much time without everything getting way worse. I spend the better part of every day in bed, but usually I have enough strength to go to one place each day (store, out to eat, etc.)

3) I am glad though that we finally have a direction to look for the cause. Just need to find a good doctor who specializes in hormone or pituitary type problems. Anyone know of such? I am willing to travel anywhere in the world to get help

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/19/2008 8:36 PM (GMT -7)   
It seems like the endo researcher you're going to see is the way to go, at least for now. Sorry, I don't know of any specialists in this field. See if this endo. can help, and if he/she can't, ask where they would go if they had this condition.

Sorry I can't be of more help. Maybe someone else can.

PaLady

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 6706
   Posted 6/20/2008 1:56 AM (GMT -7)   
It looks as if you have done your part in research and hopefully this Endo Doc will do his part.

Have you tried doing a search on Adrenal and pit.gland diseases and see what pops? Maybe this is something genetic and that is also a place to reserve looking if the Endo doesnt find answers for you.

Now here I am going to say something and even though there has been numerous case studies as well as research in tis not one thing has actually shown a positive direct cause.

I am 51 as of last week and suffered extreme migraines for the better part of my life with times in there that they were far worse and more occurring in frequency then others,i.e. during pregnancy,menstrual cycles,and some that we cant make a link to. Like you I went thru H*LL! Years of Docs, specialists,ERs, and once maybe twice a direct link between my headaches and placenta abruption resulting in the premature birth of two children and subsequent loss of one due to that prematurity.

I spent 75 percent of each pregnancy in the hospital where they could control the pain and vomiting that was never ending during certain trimesters.

Then after the last birth at 41 I had a partial hysterectomy and was started on hormone therapy and Walla! the headaches ceased to exist altogether. Just like that not another headache that I had to take more then my usual meds for,not one ER visit nothing. For the first several years I lived in constant fear that I was going to do something to make them recur but they didnt.

At one time I was taken off HRT since they thought I had been on it too long with the risk of cervical cancer being greater in women over 50 on hrt therapy and guess what happened? You got it! They came back with a vengence.

Needless to say even today postmenapausal I am still on the prempro and will remain on it regardless of the the increased risks and yes I had to sign a waiver stating I knew the risks but anything is better then the constant headaches.

I did find one headache specialist in Ohio that said he was a firm believer in hormone imbalances in relation to migraines.

I dont have any idea if I had more or less or not enough of one thing or another as we never went so far as doing al the testing and seeing a Endo and frankly I could care less as long as they dont come back in this lifetime.

During pregnancy when the hormone levels were changing so much and so often this is when my headaches were at their worst. During certain days of the menstrual cycle the same thing.

So what your saying here makes perfect sense to me and dont stop charging on as there is relief possible if you can find someone that believes in this hormone relationship with migraines and you are willing to forego the treatment as hormone therapy for a man not going thru menopause is probably going to cause some problems.

So if the endo doesnt find answers by way of Pit ot Adrenal gland issues other then they are also directly related to hormone levels as well,then there is still hope in the way of HRT therapy.

By the way every symptom you described is exactly as I had them. It was like a constant exxagerated state of PMS or menopause all the time. The hot flashes,the feelings of depression and being in a slump that was never ending,the general feelings of malaise and not being well or healthy,morbid thoughts, stomach pains at times that were not explainable and feeling weak and faint. I spent day after day even without being in a full blown migraine wasting away ont eh couch if I could pull myself there from the bed. I on an average changed my sheets and clothes twice a night if the temps in my room grew to more then 65. I ran a room air conditioner all year round and didnt own a coat for many a winters,never needed it.

Sadly I have one daughter that is 34 and seems to be on the same path as I. I am hoping that we are wrong but at her age and her number of headaches I am seeing some of the same symptoms that I had. I didnt get really bad until I reached 35 with this and then from that premenapausal age until I went on the HRT at about 41 it all got worse.

I apologize for this being so long but I wanted to give you my experience with this so maybe if they dont look hard enough at those hormone levels or dont take them seriously enough you can at least search in that direction for answers or treatment options.

I wish you the best of luck and I want to add here that I had a very difficult time finding any Doc or even person in any field that believed or looked seriously at the magnitude of my symptoms, I suppose they thought it was a blown out of proportion but believe me it wasnt!
NVR
 
Bilateral knee replacements,spondylosis of L-3,4,5 and S-1, osteoarthritis,premenopausal migraines.
 
Meds: Methadone,xanax,zanaflex,maxide,prempro,K+,indocin,lexapro,neurontin(coming off) lyrica(going onto)
 
 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/20/2008 10:11 AM (GMT -7)   
Nvr you reminded me of headaches I developed as I was going through perimenopause. I never had migraines before but in my early 50's started getting them associated with my periods (then becoming super-heavy for a few years due to fibroids, which are, of course, related to high estrogen) and after doing some of my own research found they were caled "menstrual migraines" and that sometimes women who had them all their life stopped getting them during perimenopause and after menopause. And women (like me) who never had them started getting them as hormone levels began changing. As soon as I finally reached menopause - several years for me! - they stopped. And since FSH & LH are associated with a woman's menstrual cycle, I have to wonder, sickkid, what the hormone issues mean for you.

I'd follow nvr's advice and keep researching this. It may sound odd for you, as we seem to be talking only about females, but women have testosterone in our bodies, too, but lower levels than men. So the FSH & LH would be at lower levels for men, but they still can all be important. When a woman's testosterone level is too high or low she experiences problems, too, and there are some women with low testosterone levels who take it to increase libido (sex drive) to a normal level. Anyway, I think hormones could be playing a significant role for you, and you may be able to get some relief from at least some symptoms by an individualized hormone replacement therapy plan. I know it may sound strange, but perhaps reading some books generally meant for women could help you learn more about hormonal issues. Christianne Northrop, MD, is a good source. And I know some celebrities have written books on what are called bioidentical hormones, which are natural as opposed to synthetic formulations.

Keep searching for your answers!

PaLady

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 6706
   Posted 6/22/2008 5:18 AM (GMT -7)   
PA that is exactly how it worked for me, as you read! It was so strange and very few Docs had any idea why this was happening this way and the only person that knew anything that might help was my high risk OB/GYN and he had more info regarding the research and treatment for this.

I had an entire life of strange menstrual cycles with periods of no longer then 36 hours! This was after kids as well as before so it wasnt making sense to say I has having PMS symptoms as I really didnt even have a complete cycle and never suffered any other PMS symptoms, no cramping,bloating, etc. nothing just those horrific migraines.

I like you have to wonder how this all ties in with the male and their hormone levels and can only think like Sick already knows it is genetically related to a gland malfunction or disease and in which case the Endo is going to be the way to go but hoping he gets one with an open mind and some knowledge of how hormones work related to women and those ghastly peri and post menapuasal symptoms. Guys have a hard time understanding just how large the symptoms can grow to be. Hot flashes to most sounds like little more then a discomfort. LOl But if you are the recipient of those things you know what I mean.

Here is hoping at least something we have said makes sense and helps connect for you Sick and hoping after your appointment you can come here and change your username!! LOl.
NVR
 
Bilateral knee replacements,spondylosis of L-3,4,5 and S-1, osteoarthritis,premenopausal migraines.
 
Meds: Methadone,xanax,zanaflex,maxide,prempro,K+,indocin,lexapro,neurontin(coming off) lyrica(going onto)
 
 

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