It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Hormone Problems Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 06-22-2013, 03:11 AM   #1
Newbie
(male)
 
Join Date: Jun 2013
Location: Berlin
Posts: 6
berliner1899 HB User
hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

Hello, everybody! The state of me is really desperate and depressed ,so I figured out I could seek help or any kind of advice here . So ,to begin with, I am 20 years old and have never had any kind of health issues and my family does not have a history in endocrine-related problems. I have recently been diagnosed with partial hypopituitarism(secondary hypothyroidism and secondary hypogonadism) and I am still in the middle of nowhere in the diagnostic of the problem.
It all started 3 months ago. I used to lead a really active life – I went to the gym every day and ,played football 2-3 times a week, studied intensively at university and worked part-time in a disco. I used to be really sporty, muscular and happy person. I started having a chain of symptoms ,which came one after the other and are all present today, many of them gotten extremely worse and unbearable :
-extreme fatigue
- dry mouth , polyuria (about 6l per day) and nocturia – wake up to go to the toilet twice every night
- severe constipation – my bowels just don’t work anymore. One day 3 months ago,I got constipated and since then I have not been on my own in the toilet. Need to overdose with laxatives every 4-5 days to keep my bowels relatively clean.
- Complete muscle loss and joint pain – I have lost all my muscle mass during these months and my whole body is aching every single day – now I sleep 10 hrs a day and lie in bed another ten.
-weight gain – not that noticeable,since I barely eat….that constipation is killing me!!!
- Fat gain on thighs and face,abdominal fat
- Low blood pressure ( 80/40) and heart pulse (40 per min)
- Ringing in the ears – 24/7
- Dry hair and face
-Loss of pubic hair and absolutely NO libido,erectile disfunction
- Brain fog – I cannot think straight at all!


So after a long time suffering and different doctors , I got my hormone tests done several times and here are the shocking results :
TSH 2.3 mU/l (0.270 – 4.2)
FT4 10.59 pmol/l (12 – 22)
FT3 2.24 pmol/l (3.54 – 6.47)
LH 2.62 mU/ml (1.5 – 9.3)
FSH 1.16 mU/ml (1.4 – 18.1)
Testosterone – 2.9 nmol/l (8.64-29)
Free T - 0.0446 nmol/l
Cortizol – 920 nmol/l (171 – 536)
Estradiol 153.63 (0 – 146.1)
Prolactin – 2.71 ng/ml (3.9 – 19.7)
Growth Hormone (serum) – 0.747 ( less than 7 )
IGF1 – 157.4 ng/ml (110 – 489)

Given these results,I got diagnosed with secondary hypothyroidism, hypogonadotropic hypogonadism and hypercortisolism ( high cortisol was measured 3 times in a serum tests,now I am waiting for my saliva test results).They tried a test with Clomid (Clomifene citrate) to trick the pituitary into producing Testosterone ,but it did not give any results.They did a CT on my pituitary,wich showed no tumors , but now I will be doing a MRI to make sure,because the doctors just don’t find any normal reason for the state of me. I have never had head traumas and contact with radiation and so on.Everything is going really slow – now I did the Dexamethasone- Cortisol suppression test(To check for Cushing’s syndrome) and I have to wait 2 weeks for the results to come .My condition is getting only worse – it is like a survival every single day…They wanted me to start Levothyroxine 50mcg and I have been drinking it for 2 weeks ,but I think It makes me feel even worse…Shall I stop it and wait till they do the MRI of the brain and until the proper diagnosis is 100% sure? I am afraid of starting a life-long treatment, I am really scared of taking Testosterone and FT4,GH and so on,because ,the side effects will basically ruin my life(if not already ruined). I am only 20 years old ,used to be really muscular and sports person…It is like the devil messed up my life out of nowhere…. I am extremely depressed already….

So,how would you comment the test results? Any sort of advice is highly appreciated!I am scared to death and I just want my normal life back …I can’t keep struggling like that,It is just not worth it. Thank you in advance!!!

 
Reply With Quote
Sponsors Lightbulb
   
Old 06-22-2013, 08:59 AM   #2
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,843
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: hypogonadism, hypothyroidism and hypercortisolism!Please help,20 yrs male

A few comments first to reassure you and welcome to the boards. You do have some complex endocrine problems, but nothing insurmountable with proper treatment. The thyroid hormone should be continued, not stopped. Your MRI is important because pituitary tumors can be too tiny to show up on CT scan. They are benign and can usually be dealt with medically. The extreme urine output is probably lack of anti-diuretic hormone (vasopressin) from pituitary, and that may not have been tested yet but can be treated with replacement of ADH via nasal spray. It is likely the dehydration from that that is causing you weakness, along with the low thyroid. Your testosterone can be replaced directly to help you regain your muscle mass. Your elevated cortisol may be from an adenoma, the benign tumor they are looking for, secreting excess ACTH. I would ask your endo to check you for diabetes insipidus, the lack of ADH, so you can get started on treatment for that. It is very important to keep up your fluid intake to match your urine output plus 1 extra liter for insensible water loss, like thru sweat and breathing. Your BP Pulse and constipation will improve with thyroid replacement and better hydration. If no adenoma is found, please ask Dr to check you for lupus and other connective tissue disorders, as those can cause autoimmune ir inflammatory destruction of pituitary gland, and could explain some of the severe aching and joint pain. The ADH replacement is crucial to get your BP up, so I would ask about that now. It will reduce your urine output and stop the nocturia. The cortisol being high may simply be a reflection of the stress your body is in. This will get better! Hang in there and learn all you can while you are resting. This is a very complex area of medicine and you will need to thoroughly understand all the hormone relationships to manage it. I am sorry you are going thru such a rough time at such a young age. Hang in there and keep writing here, as you will get help and support.

 
Reply With Quote
Old 06-24-2013, 01:36 AM   #3
Newbie
(male)
 
Join Date: Jun 2013
Location: Berlin
Posts: 6
berliner1899 HB User
Re: hypogonadism, hypothyroidism and hypercortisolism!Please help,20 yrs male

Firstly, thanks for the quick answer . I know i should not worry that much and that everything can be properly threated....It is just that sometimes (or at least in my case) most of the doc's don't have a clue where to start from and don't really seem to care. It's really hard to find a good endocrinologist.However, I am having the MRI soon and I hope things will get a bit clearer then. I will make sure I check on lupus or other similar conditions (going to a dr ,specialising in infections tomorrow) Thanks for the support!

 
Reply With Quote
Old 06-24-2013, 04:52 AM   #4
Senior Veteran
(male)
 
Machaon's Avatar
 
Join Date: Feb 2003
Location: Fort Laud
Posts: 3,958
Blog Entries: 22
Machaon HB UserMachaon HB UserMachaon HB UserMachaon HB UserMachaon HB UserMachaon HB UserMachaon HB UserMachaon HB UserMachaon HB UserMachaon HB UserMachaon HB User
Re: hypogonadism, hypothyroidism and hypercortisolism!Please help,20 yrs male

Quote:
Originally Posted by berliner1899 View Post
I have recently been diagnosed with partial hypopituitarism(secondary hypothyroidism and secondary hypogonadism) and I am still in the middle of nowhere in the diagnostic of the problem. ... It all started 3 months ago.
The best outcome would be that you would be able to find something that has caused your metabolism to malfunction. Then, by eliminating the cause of your dysfunctional metabolism, you could be back to normal, and not have to take life-long nasty medications or go thru expensive, time consuming tests. All of the tests in the world are almost worthless if you are not able to find the cause of your health problems and eliminate the cause.

I am a big believer in cause and effect. If you don't have some serious defects in your body, then, in my mind, there could be an external cause of your problems.

That being said.... 3 months ago, what changed in your life? Did you change your diet? Did you change your residence? Did you change your clothes? Did you get new furniture? New cologne? New deodorant? Did a new factory, or new highway open up near you? Did you paint your apartment?

How was the weather in Berlin last year? Was it warmer than normal or colder? Any increase in pollution? Did you have more problems with insects (ants, spiders, fleas, etc) in your apartment? Were there any changes that you can think of that might have been a reason for your current health problems?
__________________
Greatly Improved CHF, A-Fib, HBP, Asthma:

⇒ Eliminate household items that are toxic!
⇒ Balanced, healthy, low glycemic diet
⇒ Lots of Exercise
⇒ Avoid night allergens, toxins
⇒ Coreg!

Last edited by Machaon; 06-24-2013 at 04:55 AM.

 
Reply With Quote
Old 06-25-2013, 02:06 AM   #5
Newbie
(male)
 
Join Date: Jun 2013
Location: Berlin
Posts: 6
berliner1899 HB User
Re: hypogonadism, hypothyroidism and hypercortisolism!Please help,20 yrs male

Quote:
Originally Posted by Machaon View Post

That being said.... 3 months ago, what changed in your life?
Well,I cannot think of anything,really...I was doing exactly what I have been doing for 2 years already - studying,working and doing sports...Malnutrition is not really the case,since I was eating as healthy as I could,loads of times during the day - I was trying to gain some weight,but I never could,since I guess my metabolism was really fast,because of all the years training soccer.Also to mention, I have never taken any sort of supplements - protein shakes,muscle builders,amino acids...I hated everything that is synthetic and thought it damages the body in the long run.That is what really makes me wonder,since I cannot think of any changes that could have led to the state of me,how is it possible a completely healthy person to turn into a sick,totally disabled person just in terms of weeks.....

I have already ruled out all the STD-s ,had tests for HIV,chlamidia,syphylis,Hepatitis B and C and they all came out negative.I am going to the infectiologists tomorrow,I guess I would make them test me for some antibodies . What infections,inflammatory or autoimunne diseases could possibly lead to a underactive pituitary? The case here is that you have to be very well-informed and demand your rights (tests) ,otherwise the doctors are just turning a blind eye on you....

Or what kind of a specialist should I go extra to?I went already to gastroenterologists and cardiologists for the constipation and the low heart rate ,but that was before we found out the problem is of an endocrine matter.What kind of a specialist could possibly be helpful for my case as a second opinion?Thanks in advance,any sort of advice is highly appreciated,since I am really sick and tired already....

 
Reply With Quote
Old 06-25-2013, 02:29 AM   #6
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,843
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: hypogonadism, hypothyroidism and hypercortisolism!Please help,20 yrs male

This problem with the pituitary just happens, whether it is an adenoma or something else. It is nothing that you did or didn't do. You might be able to talk the infectious disease Dr into running a sed rate, CRP and ANA for lupus. Infections do not typically affect the pituitary gland. A rheumatologist to rule out autoimmune disease would be the next step, especially if any of the 3 mentioned tests are abnormal. And when do you get your MRI? I would schedule an app't with rheumatologist with the idea of cancelling it if an adenoma shows up to explain this. The hormone replacements that you need will help you greatly and not cause side effecxts as long as doses are adjusted properly. Please call your endo about checking for diabetes insipidus (lack of ADH from pituitary). That is likely keeping you dehydrated with low BP and can be treated to help you conserve your water. Do you have sodium, chloride and potassium results on your labs? What diseases run in your family? Please also ask to get a ferritin (stored iron) level checked for the ringing in ears. Do you have a CBC result on labs? Anemia, low white count, low platelets can all point to autoimmune disease.

 
Reply With Quote
Old 06-25-2013, 08:23 AM   #7
Newbie
(male)
 
Join Date: Jun 2013
Location: Berlin
Posts: 6
berliner1899 HB User
Re: hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

I will definitely make an appointment with a rheumatology and tell my endo to check on feritinin and vit. deficiencies . Sodium,Potassum and etc all come back normal except of Calcium,which is slightly over the limit.My endo feels I need to go to other specialists(Mainly because he wants to get rid of my case),because he says that that kind of a muscle and joint pain could not be result of hormonal imbalance.I really struggle when climbing stairs and get extremely tired when just walking.My legs have turned into 2 big pieces of fat,same story for the upper body,good thing is I don't use it that much...But still my arms hurt a lot when brushing my teeth,it is really hard to pull doors and so on.I am totally disabled.Do you think it is the hormones?

 
Reply With Quote
Old 06-26-2013, 08:06 AM   #8
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,843
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

The hypothyroidism can cause muscle weakness and overall fatigue, It is interesting that your calcium is a little high. That could point to a parathyroid overactivity. I would ask your endo to check your parathyroid hormone level too. That can cause aching in the muscles of the extremities, but not joint pain. I don't think all of this is related to the hormone problems. I think the hormone problems could be related to an underlying autoimmune disorder affecting the pituitary. It is worth seeing a rheum to at least rule that out. I know you feel horrible right now, but this should all get figured out and once treated thoroughly, you should feel much better.

 
Reply With Quote
Old 06-27-2013, 04:22 AM   #9
Newbie
(male)
 
Join Date: Jun 2013
Location: Berlin
Posts: 6
berliner1899 HB User
Re: hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

I have just come back from my endo,I was planning on telling him to test me for iron overload,vit deficiencies and parathyroid hormones.Apparently,it was too early for him to be there and it was the nurse once again.My endo is the so-called 'best' in Berlin and he is a total disaster - shows a total lack of interest and support.They tested me once again for FT3,FT4,TSH and Testosterone (as if they haven't been tested low 10 times already....)today and the results come next week when I will finally meet him and hopefully have a conversation with him.I made an appointment with another endo for a second opinion...I am also planning my next week appointments now and try to figure out the best way to do it - I am going to the infectionology for sure and will try to make appointments with rheumatologists and neurologists. ladybud,thanks for the tipp about the rheumatologists - it is really a must,since an autoimmune disease could have started the whole thing in the first place and i really need to rule this out (as well as neurological condition) . I really demand on clearing up the diagnosis and the possible diseases,which could have brought me to the state me.Starting the HRT is obviously the easiest way,but I still pray that there is an underlying condition and that there is a diagnose out there for me....It would not make sense otherwise...Also,I have been taking L thyroxin for 20 days already and don't feel any positive effect yet.However,I think I do feel even worse...I know the kick in period is different for everybody,but I really dislike some of the negative side effects of the drug.What do you think about Armour thyroid?I have read some really good stuff about it,shame it cannot be found in Germany,but I could still order it from USA if my endo agrees to swap the medication...Any useful opinions on Armour?

 
Reply With Quote
Old 06-28-2013, 07:43 AM   #10
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,843
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

Just to clarify, the ferritin I suggested was for iron deficiency. It will also check for iron overlaod which can cause endocrine problems. Since you seem very interested in all, and there is a chance of hyperparathyroidism from an adenoma, and the high cortisol could be from an adenoma too, you might research Multiple Endocrine Neoplasia (MEN), which is a hereditary disorder that causes several adenomas in different glands. It is rare but worth considering in your case. I am glad you are seeking a second opinion... hope that proves helpful. Always helps in complex cases to have more than one person looking at your case. Is there a University hospital in Berlin? They usually love unusual problems, and if you mention MEN to them, they'd see you! You might need a referal. Are you there in the military? Are you coming to US any time soon? As far as Armour, it works for some people, but if you have felt nothing from thyroid after 20 days, you are probably on too low a dose. What is your dose? Maybe you can call NP back and ask for an increase in dose. You can ask her to add on the ferritin, to the serum they already drew. I think PTH has to be frozen so probably can't do that on this specimen. You will have to be resourceful and advocate for yourself. Just ask for what you want if it is not suggested by your Dr. but be ready to explain or have a printed article, etc. with you to back up your request.

 
Reply With Quote
Old 07-02-2013, 03:27 AM   #11
Newbie
(male)
 
Join Date: Jun 2013
Location: Berlin
Posts: 6
berliner1899 HB User
Re: hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

Hi,there.So,I went to an infectiologist,who was quite amazed by my condition and said he will probably want me stationary next week to do some tests,because he said that my physical state is probably not all due the hormones.He drew blood for several antibody tests,he is checking on ferritin and parathyroid hormone as well.He meant that some of my symptoms are really strange and could be a marker of neurological or rheumatological conditions - really dry mouth,total loss of muscle (my hips and everything are shaking,everything hurts me 24/7,cannot bend or climb stairs),he also ment that such a severe constipation could not be all due the thyroid(In the end of the day I really have not been on my own(without laxatives) in the last 4 months....So we will wait till next week and see what comes out.

Nevertheless,my endo thinks it is all thanks to the hormones...I got my latest bloodwork results (Here I am on Lthyroxine 50 mcg for approx.10 days)

ft4 - 11,7 (9,14-18,1)
ft3 - 3,62 (3,4 - 7,7)
TSH - 0,714 (0,4 - 4,0) - seems already really supressed....
Testosterone 0,553 mg/l (2,8-8,0)
SHBG - 42,9 nmol/l (13 - 71)
LH - 1,3 (0,8 - 7,6)
FSH - 1,39 (0,7-11,1)
IGF-1 88,1 ng/ml (147 - 527)


Cortisol was in range...I am getting the results from Dexamethasone supression test this Friday.He did a full anterior pituitary stimulation test,which results I will get again on Friday and I am scheduled for a MRI on 9th of July...It seems to be an important week as it goes to my diagnose...So my endo has came up with the following problems for sure - hypogonadotropic hypogonadism,growth hormone deficiency and secondary hypothyroidism...Still not sure how this all happened out of nowhere,hope to get any relief soon...I am working with a private endo practice,first went to the 2 university ambulances (one of which is rated the best in Germany) but they simply wanted to get rid of me,started explaining me that my LH,FSH and so on are allright just because they come on the lowest part of the range...needless to mention,I was really disappointed by the attitude!

I am not in the army,here the army is voluntarily.I have chosen to go to college earlier and used to play football for a local team here as well...It all seems so impossible now,I keep on laying in bed the whole day and pray that things will get someway, somehow better....

 
Reply With Quote
Old 07-02-2013, 08:10 AM   #12
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,843
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

Glad the infectious disease Dr is looking beyond infection. I would ask him to check a CK, muscle enzyme test, for myositis, since muscle weakness and atrophy seem to be a predominant symptom. It can be a sign of myositis, an autoimmune inflammation of the muscles. I think you have found someone who will figure this out or get you pointed in the right direction. Please ask endo or ID Dr to check serum osmolality and/or ADH levels for the dehydration and diabetes insipidus possibility. I feel very hopeful for you that you will have some answers soon. You have a very complex case that will require in depth investigation, but that's ok as long as you get diagnosed and get better! Please keep us posted.

 
Reply With Quote
Old 11-19-2013, 11:23 AM   #13
Newbie
(male)
 
Join Date: Nov 2013
Location: Henniker New Hampshire U.S.A.
Posts: 1
welderboy HB User
Re: hypogonadism, hypothyroidism and hypercortisolism! Please help,20 yrs male

Hello I just read your story and I might have a clue. You might have Lyme disease. It is more of a hidden problem here in the states then AIDS was 25 years ago. It can only be found in one lab here in the whole country and even they miss it sometimes. If you have ticks then you most likely have Lyme, please check with a specialist right away. Even if you have been checked do it again and make sure you get the right type of test. I would tell you the proper name of the right test now except I forgot it, brain fog. But if my cousin who has Lyme was home to answer the phone I could tell you, but she`s not. So right to me and I will give it to you . Best of luck Welderboy PS I just joined this site to write this to you.

 
Reply With Quote
Reply Reply

Tags
cushing's syndrome, hypogonadism, hypothyrodism, low testosterone, pituitary



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



kittywitty (3), ladybud (2), Titchou (1), riley5 (1), noevr (1), psn54 (1), STLouisgal (1), chicabella (1), flamesabers (1), SkyBlue99 (1)

Site Wide Totals

teteri66 (1164), MSJayhawk (999), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (667), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 04:58 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!