Hi everyone just wondeirng where im at ? letters leaving me confused

[anonymous564]

Hi everyone, im not really sure where im at or what all these letters im getting mean. ive got a wee while to wait till i see my endocrine specialist and until then im dealing with a GP who just gives me the meds the Endo suggests but not much explaination of whats causing and its symptoms.

First letter was my original blood test and my diagnosis of high prolactin

FSH 2.1 iu/l (1.0 - 6.4)
LH 3.8 iu/l (1.7-8.6)
Prolactin 4908 mu/l (86-496)
Testosterone 6.4nmol/l (11-36)

With the above results i got an mri scan and was told i had hyperprolactinemo and have been taken cabergoline 2x weekly and have been feeling much better still not 100 percent.

I got sent for more blood tests and synacthena month or two ago and a cortisol test, and have just got this letter this week.

thank you for requesting an ITT on (my name), i took the executive decision that a short synacthen test might give us sufficient information of (my name) hypothalamic pituitary/adrenal axis. Baseline cortisol is lowerish at 169nmol/l and the peak is 479 which is at the very upper end opf the responsiveness that would be termed " equivocal" i think the result does provide evidence of some comprimise of the Pituitary Adrenal AXis and would justify hydrocortisone replacement in the context of secondary hypogonadism and the reduced growth hormone as reflected in low IGG1.

If as might occur you achive significant shrinkage of this macroadenoma wioth cabergoline there would be and oppurtunity to repeat his short synacthen test to see if that response to short synacthen testing has improved and if there is no shrinkage i would suggest that you simply carry on with the hydrocortisone replacement in the usual way. What the test does suggest is that there has not been suffiecient compromise of the axis for long enough to prevent the adrenals responding to the administered ACTH because of adrenal atrophy but there is certainly grounds to support comprimise of ACTH production.


So where does this leave me ? would it explain all the symptoms ive been complaining of for years that werent tied in with the PRolactinoma ?

Overwieght, Fat puffynipples/chest, Bier Spots, Depression, Reclusive, over emotional, always fighting and short tempered, Hairloss (scalp diffuse) eyebrow loss, no facial or body hair.

thanks for any advice

[rumpled]

Mental changes - depression, bipolar, etc, are very very common with the pituitary disorders but the docs tend to treat them stand alone and then wonder why the treatments are not working well if at all. The same goes for diabetes, blood pressure, acne etc. - pretty much nothing gets better when the pit is going against it.

I totally understand that you feel badly about your appearance, but please don't let that stand in the way of your life. A real person that loves you for you will look beyond the outside once they understand what is going on. My husband married me when I was full-blown with Cushing's so I was heavy, red-faced and had acne and sick as a dog. I am thinner now, but still sick (thanks to the docs waiting forever to treat me).

I also sought out counseling for my depression and frustration for all this - as long as you have a health professional that understand pituitary disorders and understands the physical part of it, you may get some help with it - don't go with someone that just thinks it is mental, it is not.

[anonymous564]

I will do, ive got my next mri in a fornight so hopefully some shrinkage will be there since my first mri.

Also do any of you suffer from BDD or OCD since it all began, i think all physical symptoms aside my whole way at approaching life has changed, it has led to me being unable to have any kind of relationship as i cant stand my appearance and wouldnt want anyone else to see my OCD behaviours dealing with it ?

[horselip]

Testosterone might really help too! Ask your endo about this.

[rumpled]

Yes, the female traits are part of this and may or may not go away (it may be too far gone and too developed) but should recede some and not get worse. Yeah, they say those with hormone issues do not get tall, but I had Cushing's too and I got tall too - so it has that effect on some, but not all. It will also help the skin a lot!

It you don't treat it, yes, you will have a lot of other health issues. I take growth hormone too.

[anonymous564]

Hi thanks all for the replies, ive spoken to my gp about the letter i received for my results, he told me im going to be getting started on a growth homrone replacement as soon as my endo sends me an appointment letter out.

What kind of benifits could i see from taking this ? i know im just hitting puberty now and people say i look 16-17 when im 25, but im tall 6ft 2 inch so i take it never interupted that part or could i have ended up like 6 ft 4 or something lol .

Also what about things like gynecomstia and seb dermatitis could they be helped by this ? i also have bad circulation and one of the symptoms mentions is cardiovascular disease if left untreated.

Thanks for any more advice you have cheers

[horselip]

Hey there-
Yes, your labs would definitely explain your symptoms. You’ve got pituitary related hormone deficiencies. Part of it may be that no doctor has just come out and said this to you. This is where having a neuroendocrinologist involoved in your care vs a GP and endo could help you.

Cabergoline can shrink prolacinomas, but you have to be a the right dose and have regular monitoring of your prolactin levels and tumor size.

You definitely have other hormones that are off and your neuroendo should be working with you to get these right.  What about your testosterone levels? For a 25 year old male your symptoms could definitely be attributed to this. You know that your growth hormone levels might be low too because of the low IGF.  In addition, your doctor just checked your ACTH and cortisol levels. Your cortisol could be low. This will make you tired.  Try to read up on these hormones and learn about them. As replacing them might really help you so much. The ones jumping off the page at me are testosterone, Growth hormone and cortisol. Also what about your thyroid? That could be low too.

So there is so much that can done to help you to feel better!

[rumpled]

Get copies of everything. Read up.  You also, I would bet, have other hormonal issues, maybe something else.

I see my endo quarterly - get my tests done before I go so I can discuss the tests in the appointment.

The anxiety, headaches, ocd, etc - all symptoms of the pituitary tumor - shows you are not completely treated. You may want to consider another doctor. A neuro-endo.

[anonymous564]

thanks for the reply rumpled, i forgot to mention im a male 25 yrs old, they think ive had the pituirity tumor since i was in high school as ive never hit puberty and only now this last tow months have started to get facial hair and acne etc from the cabergoline treatment.

As far asd tests etc i have no idea ive met my endo once rabout 6-7 monmths ag oto basically tell me about my blood tests and start cabergoline, since then ive had letters for tests of blood and eyes ..... and ive been going back and forth to my gp with anxiety,ocd,bdd problems and trying to get a fixed but im still feeling as hopeless as before i was diagnosed.

[rumpled]

It sounds like your doc communicates like an...

Ok, you have a prolactinoma. That means you have a tumor on the pituitary and it is secreting a hormone - it is probably messing with your period, your emotions and your skin.

Now, your doc saw the low cortisol reading and sent you for a cortisol stim test - which was so nice of him. The results are saying that you need replacements. I would normally be happy except that your symptoms are saying the opposite - low cortisol is skinny, nauseated, and craves salt, sometimes darker skin. You are heavier... that is high cortisol - and alas, you may be like me and countless other who flunk every stim test out there and still have Cushing's disease/syndrome. Your thyroid is also effected why cortisol is high. If you are episodic/cyclical, you will show up low/high/normal at weird times. Emotions are effected by cortisol too.

The reclusive is low growth hormone.

Is your endo a regular endo - or a neuro endo? Have you had ACTH, IGF-1 and a really good thyroid and androgen check and all the adrenal hormones checked?