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04/25/2011 08:14 AM

HELP .. diagnosed with php recently but confused

newphp
 
Posts: 10
New Member

hi everyone, im new to this site.

->low fsh, lh,oestrogen, low prl, lowish acth, low-lowish gh.

im 19 yrs old at uni, 1st yr, and have been diagnosed as having php!

after years of progressively worsening tiredness and severly delayed puberty like my breasts stopped growing when i was 14ish and theyre like aa if that lol. im 5'5 so my heights ok, but ive never had a proper menstrual cycle. started periods at 14 were ok for a year and since then theyvce been seriously iregular like i havent had a period for years and then ive had one and then again none for a year. even after being put on the pill-contraceptive pill i have the bleeds but after the 3month pill trial i had one period on my own and then NOTHING !

anyways more recently ive had severe headahces so bad i thougght i hadc a tumour but i dont tnx to the mri.

i have been called by the endo for an itt, but am yet to receive the date for that.

im on the verge of being kicked out of my university as i couldnt even pass my sem1 exams, and i feel my condtion is getting worse. my sem2 exams are in june. ive informed the uni of my sityuatn now, but i dnt know if ill be able to pass next smester.

i wake up tiredish and after a couple of hrs i am ready to gto back to bed, its insane. im not depressed or anything yet, but iff i actually get kicked out of uni i dnt know what i'd do.

i know im defo gna b put on hrt, lol i have like no periods and neraly nill boobs, which btw are decreasing, dccespite me ganing 14kg?! somehow, not intentiaonal weight gain by the way.

i think i may also be put on gh.

i had a couple of questions for those of u out there who have been diagnosed previosuly with php or hypopit.:

a) will it ever get better or is my life over?

(i cant do anything seriously i was one of the most social ppl i know and now i cant even get out of bed, and no im not depressed )

b) how is it like being put on hrt (at age of 19 yrs)

will my breasts grow and will i get normal periods

c) also if i get put on gh hormone will i have to do injections for life?! does it hurt and where do u inject? is there bruising after? can i not just take pills or nasal spray instead!?? also what if im not eligible for gh but am suffereing alot from lack of it, is there anything i can do.

d)after excercise i sometimes feel better like > able to concentrate, this feeling however only lasts for a hr or so. maybe even less. but still why do i feel like this.

e)why will my hormone levels need to be monitored for life

f) i want to go into the medical profession; will this diagnosis / condition prevent me from doing so..

what if i have a "relapse" type thing in the future.

seriosuly i am so scared.

g)since my pituatry is screwd up for some reason does that mean the hormones that are okaish at the moment, also end up not working in the future. my tsh is ok at the moment i think, but in the future...??

h) will i be able to have kids

i) will i ever be able to get married or get with someone who will like me despite this hanging over my head.?

sorry for all the questions its just im really confused right now and my parents dont understand at all..not that theyre around much. any help guidance or hope would be much appreciated.

also, if anyone lives in london could u please recommend a good endo/hosp, as my current one is well not exactly great..

thanks,

new phpSmile_

Reply

04/25/2011 08:31 PM
hypomama
hypomama  
Posts: 772
Member

Wow - lot's of questions and very valid ones! No, Your life isn't over. I work full time in a trauma operating room. If you want to go to medical school and become the endocrinologist for us we will cheer you on all the way!!! We need someone who understands!

Being put on hormone replacement means you will be getting what your body needs! You will feel better but it will take time, fine tuning, yes lab work, being in tune with your body and what it is telling you, journaling what med doses you take and how you feel.

Your parents not understanding is not unusual. MOST people don't understand this stuff - even many doctors. You will need to become very educated in it and find web sites to help educate your family. I'm sure they care and are worried - they need to know that this is a real problem. If possible have them come to your appointments with you - even if you are in another state, see if they can come for at least one.

As for the growth hormone - I am on injections. No, they don't really hurt. The needle is so small, it isn't a big deal. I don't get bruising, and it helps me feel much more energetic.

As for your breasts growing - hmmmm - I was a AA until the first time I got pregnant! I wasn't having pituitary problems yet - so....I'm no help there. I'm also not sure about the pregnancy part. What I would recommend is writing down all these very important questions (and they are important) and asking your endocrinologist.

As for finding a spouse - don't diabetics get married (the answer is yes by the way) as well as many other people with obstacles in their lives. What it does mean is that your future spouse will be a gem - they will know all about you before you are married and won't be able to say "I didn't sign up for this." They will love you as you are for who you are.

The fact that your endocrinologist has already diagnosed you and is going to do an insulin stress test (I'm assuming that is what you meant by ITT) - means that you are light years ahead of many people going through this. Keep forging ahead with them and build a relationship while looking for another clinic - Google is your friend! I'm sorry but I only know of US clinics.

Hang in there - it will get better. I probably missed some of your questions but I'm sure that others will weigh in.


04/27/2011 12:38 AM
newphp
 
Posts: 10
New Member

thanks so much for your reply, yes will definetly takle these q's to the endo.

04/28/2011 12:40 AM
pdxpits
Posts: 3
New Member

I know you probably don't feel this way, but you are lucky to get diagnosed so young. I first started experiencing symptoms at the age of 28 in grad school. I was told by countless doctors and 3 shrinks that it was all in my head. A mountain of Paxil and years later, my levels had gotten so low that I started getting pains in my chest and it turned out I was growing breasts. I'm a man by the way, so if you want my breasts you can have them. My primary care doc spent months chasing a very unlikely diagnosis of male breast cancer. I remember saying, “But I feel like shit and I'm going crazy. Does breast cancer make you go crazy?” He ignored me and scheduled another mammogram.

Only after all that, at the age of 41, did anyone think to do a simple blood panel to test for hormone levels and guess what- Low , low, low, low… Now that I have a great endo and a diagnosis- PHP with no tumor- and I am getting used to life of chronic disease management . I'm finally getting my levels dialed in and I feel much better, although I don't think I'll ever be “normal”- whatever that is. It's not all bad news. Although I'm supposed to be infertile my wife and I had a baby son 2 weeks ago- a real miracle. Fact is, there are no rules about how this is going to play out for you. As far as a partner goes, real partners love you for who you are, and adversity shapes character, usually for the better. My wife says that this disease and the way I've handled it made me her hero. We all have warts somewhere- its how we deal with them that says who we are. Somewhere out there is a mature partner for you who will love you because of who you are, not in spite of who you are. And not for nothing, but you are not defined by your PHP, it is a part of who you are but you are so much more! If I was in your position I would focus on getting well and finding the best endo who is a pituitary specialist and not some diabetes hack. If need be, school can wait and you can always return. You'll be amazed at how well you'll do when you feel better. As far as docs go, I don't know what country you are in but I had great luck with the list on the Pituitary Action Network : http://www.pituitary.org. My doc was on there and she's a life saver. Hang in there- remember that we are all around you, you just can't see us.

Post edited by: pdxpits, at: 04/28/2011 01:16 AM


05/03/2011 03:18 PM
newphp
 
Posts: 10
New Member

Thanks so much for your advice. Its very useful.

Im in the uk so we use the nhs ssystem here, v.few people go private, as its very very expensive. But i guess my endo's ok, its just the waiting time is insanely long on the nhs.

Congratulations on your son!

Its great to know you can still have kids even if they say you may be infertile which i probably am.

Glad to know im not the only one with php that has no tumour, (or any known cause as of yet).

Also, why did the doctor not send you to an endo sooner, i.e after the breast cancer was ruled out.

I know you said that you dont feel "normal" despite the treatment but does the fatigue subside a bit/aloT after treatment / meds?

im still waiting for them to put me on medication.

Have to do some more tests before they can do that though.

How long after they put you on the initial medication, did it take for you to feel a significant difference..weeks, months,

Thanks so much!

Smile

Post edited by: newphp, at: 05/03/2011 03:38 PM


05/03/2011 08:26 PM
pdxpits
Posts: 3
New Member

I started testosterone replacement first, and it took weeks for my levels to build up, but when they did I felt better. The breast thing went away immediately after I started. Bad side effect of Test is that it destroys all the Vit D in your body. Among other things Vit. D is needed for absorption of calcium and to make the connections between tendons and muscles. Although I now take 50,000 IU Vit D, I still am a bit achy and feel like I have arthritis. After a few months on testosterone alone, I started oral hydrocortisone to replace cortisol due to low ACTH. The effect of this was immediate- I felt drunk the first day, and after a few days I got used to it. I had so much more energy and my appetite leveled out. I immediately lost 3-4 kg, and I've started working out again for the first time in 4 years. Feels great- no constant tiredness.

The best way I can describe it is that before treatment I felt like crud all the time, and in my mind I viewed it as all one thing. Turns out it was layers of crud, and with each new replacement therapy we peel off a layer of crud and add back a few side effects. Thus my comment about normal. I've moved to this kind of new state where I feel 80% better and 10% worse due to side effects. Overall I feel much better, but not like I did way back.

BTW, I studied at the Uni. Of London back in the late 80's, and I got sick there so I remember the national health well. Over here, access to endos is limited as well, so I wouldn't necessarily blame the NH. I've been waiting 6 months to see a specialist to start LH/FSH replacement and get off the testosterone. There are not that many endos and these conditions are not considered life threatening, so there is no urgency. My diagnosis took months, and treatment has been almost a year of blood test, med adjustment, blood test, adjustment, etc. It is a long journey that takes years with long spaces in between. Early on I just wanted to “fix it” and fix it fast. I now realize that it doesn't work like that. I'm getting used to the idea that it could be a lifetime of maintenance and slow changes. Your body needs time to adjust in between each change, and that time adds up. I did convince my doc to let me do annual MRI's to see if they can find a tumor if it grows bigger. Also, the cross sections of our MRI machine here are 3mm apart, so a small tumor could easily be hiding in between the slices of my first scan. I'm hoping that a second scan will cross section my pit in a slightly different place and reveal some of the space in between. I'll be able to get that second scan in October. Hang in there!


05/04/2011 09:30 PM
radiochick
radiochick  
Posts: 451
Member

Hi newphp. You've been given some great advice here. Px has given you some great insight. A layer at a time is a perfect description.

As you start your meds it may take several days to notice even small changes. It does take awhile to build and recoop your much depleted systems. Synthroid coups take a dull month. HC could take a week. Vitamin replacement takes a month or even two.... depending on how down you were and for how long.

So happy you found us! Many people are here leading very normal lives once they get proper treatment. We must always stay vigilant to maintain our quality of life though.


05/05/2011 09:48 AM
newphp
 
Posts: 10
New Member

thanks yes the advice from every1 is great!

Whats synthroid?

also how comes they do not start you on two or more meds at once, so as to maximise the effect or does it not work like that.

the fact that a Normal life will be possible after treatment is amzing to hear.

oh and thanks for the hug!Smile

Post edited by: newphp, at: 05/05/2011 09:49 AM


05/06/2011 07:07 AM
radiochick
radiochick  
Posts: 451
Member

Synthroid is a thyroid replacement drug, but there many brands available. It's really important, in my opinion, to start one new drug at a time to watch for problems.

What have you started taking?


05/07/2011 01:30 AM
newphp
 
Posts: 10
New Member

Im still undergoing tests.
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