Pituitary adenoma getting ready to start hcg

[StarlaG]

Hello,

I am new to this site and really glad that I found it.
I am 33 years old and was diagnosed with a pituitary adenoma. If you are familiar with this condition, you would know that my metabolism is extremely slow due to high cortisol levels. I always eat healthy and I work out 5 times a week and my weight never goes down. Ive tried a couple of diets including fasting for 7 days only on fruits and vegetables and my weight did not budge. I learned about the hcg diet drops from a friend and thought I would give them a try. Has anyone with a pituitary adenoma tried this and has it been successful?

[Stevie Renee]

I am clueless about it but wanted to say hi and welcome to LCF

When do you load?

[Potaty]

I was "unofficially" diagnosed with a pituitary adenoma when I was undergoing infertility tests. I say unofficially because they diagnosed me just based on my prolactin levels and did not do a scan.

I had great success with hcg (homeopathic), went from 220 to 165 and got pregnant at the tail end of a round (4 rounds total). My baby is now 9 months old and I am breastfeeding, but I plan on doing hcg again to get the baby weight off. good luck!

[Amity79]

If you have a pituitary adenoma that is causing high cortisol levels, then you have Cushing's Disease. I see you are in Houston...where I am. I have seen darn near every endo in this city and they are all crap. I was diagnosed with Cushing's 3 years ago and was successfully treated. I have lost 100 pounds since. If they simply 'diagnosed' pituitary adenoma and sent you on your merry way (which would not surprise me)....PLEASE PM!!!

You will not lose weight until it is successfully treated!


Plese PM me!

Rachel

[Randi]

Originally Posted by Amity79

If you have a pituitary adenoma that is causing high cortisol levels, then you have Cushing's Disease. I see you are in Houston...where I am. I have seen darn near every endo in this city and they are all crap. I was diagnosed with Cushing's 3 years ago and was successfully treated. I have lost 100 pounds since. If they simply 'diagnosed' pituitary adenoma and sent you on your merry way (which would not surprise me)....PLEASE PM!!!

You will not lose weight until it is successfully treated!


Plese PM me!

Rachel

This is not necessarily the case. I have had a pituitary adenoma since 2000 and have been tested for cushings a few times and it has always come back negative.

For the OP I have not tried HCG, but did have huge success with Atkins in the past.

[StarlaG]

Originally Posted by Stevie Renee

I am clueless about it but wanted to say hi and welcome to LCF

When do you load?

Thank you for the warm welcome. I will load on Saturday.

[StarlaG]

Originally Posted by Potaty

I was "unofficially" diagnosed with a pituitary adenoma when I was undergoing infertility tests. I say unofficially because they diagnosed me just based on my prolactin levels and did not do a scan.

I had great success with hcg (homeopathic), went from 220 to 165 and got pregnant at the tail end of a round (4 rounds total). My baby is now 9 months old and I am breastfeeding, but I plan on doing hcg again to get the baby weight off. good luck!

Wow, Congratulations to you.
I have also been ttc conceive for over 5 years with no luck, so your post has given me hope. I was thinking that it had a lot to do with my weight. So Ive started eating healthy and exercising and haven't lost a single pound. So of course my endo has told me to stay on my meds (dostinex) and continue to eat healthy, but I am getting frustrated. I start on Saturday and will keep my progress posted.

[StarlaG]

Hi Randi,

I would like to know a little bit more about your journey witb the pituitary tumor. I was originally diagnoaed in 2001, and have been dealing with the constant struggle to lose weight as well as conceive. I was trying to message you, but Im new so Im still trying to figure out the site.

[Randi]

Originally Posted by StarlaG

Hi Randi,

I would like to know a little bit more about your journey witb the pituitary tumor. I was originally diagnoaed in 2001, and have been dealing with the constant struggle to lose weight as well as conceive. I was trying to message you, but Im new so Im still trying to figure out the site.

I was dx with the pituitary tumor in 2000. At that time I was also tested for Cushings and that came back negative, however they did find that I also have adrenal insufficiency. I was put on Dostinex to suppress my prolactin levels.

In 2001 I got pregnant with my first child. At that time I was told to stop the Dostinex. Being pregnant as well as having the tumor my prolactin levels sky rocketed. I started lactating very early in my pregnancy. Because of this they were worried that my tumor may have had rapid growth during pregnancy so an MRI was done soon after delivery to confirm. My Dostinex dose was then increased.

With the okay from my endo I went on Atkins and lost just over 120 pounds back in 2002-2003. I continued to go for my yearly MRI's and remained on the Dostinex for quite a few years and the size of the tumor as well as my prolactin levels stabilized so my Endo tried to take me off the meds, however within weeks I my prolactin levels had sky rocketed again. I was then put back on the Dostinex and have remained on it since aside from a 9 month break in 2010 when I became pregnant with my second.

Since the birth of my second child in November of 2010 I have continued on the Dostinex and my prolactin levels have once again stabilized, however even with normal prolactin levels and not being able to breast feed due to the necessity for me to be on medications I have continued to have some lactation issues. My Endo believes that without actually having surgery to remove the tumor (which I am not willing to do at this point) that lactation issue may never resolve even with normal prolactin levels.

That is my story in a nut shell, I am sure I am leaving out tons of things, but please feel free to ask anything you would like to know. Thankfully with careful fertility monitoring I was able to get pregnant twice without much difficultly.

[Amity79]

Randi,

I spent 10 years with doctor after doctor...out of all the ones that tested...they all said I was normal. Some came back with obvious highs, but I was lied to about the result because "he didn't know what to do with me." The problem with testing for Cushing's is that the tumor goes in cycles. You have periods of high ACTH production and then periods where it is normal or even low. This is considered Cyclical Cushing's and is common in the early stages. For some it will stay this way. For others it will progress to Florid...where the tumor is constantly on and you are near death.

The problem is doctors where not tought that there is such a thing as Cyclical Cushing's. My case, I would cycle over several months, and in the high months, I was only high at midnight...WHICH IS THE MOST COMMON! I could lose durring the slow periods..but it always came right back. If you only received one or two 8am blood draws, then the test is worthless. At a minimum you should be given:

3-5 24hr urinary collection
3-5 10 hr urinary collection
3-5 midnight blood draws
8 or more midnight salivary test

And these should be done over a period of weeks or months while the patient tracks their symptoms. Elevated wieght, BS, BP, redness in face, 'roid rage, stetch marks redder, etc.

The ONLY test that was conclusive for me was the midnight blood draw. Every other one was either normal or slightly elevated. My very first midnight draw was high. Normal is 0-1, suggestive is 5, diagnostic is 7.....I was 18.6....and my 8am blood draws and 24 urines were normal. No local doctor would give this test. Only the specialist in LA would.

And, I know dozens of people with the same story.

If you have a tumor that is secreting ACTH and elevating blood cortisol levels - it is CUSHING'S, regardless what some lazy uninformed doctor may have said. It may be cyclical and not as severe as some...but it still is what it is.

The fact that you said that you may have sluggish adrenals is a dead give-away. The tumor takes over control of your cortisol production from your pituitary. When the tumor slows down, your pituitary can't send the signal to the adrenals and/or your adrenals are pooped out and it takes more ACTH to get them going....levels only the tumor would produce.

About 15-20 doctors over the course of 10 years told me I didn't have it. My own family didn't believe I had it. I went to LA to see one of only two specialist in the country on this disease and was diagnosed almost immediately. I had surgery at MD Anderson to remove the tumor. Unfortunately I had had it for so long it was wrapped around my optic nerve on one side and corotid artery on the other and could not be removed. 9 Months later I went to Wisconsin to have my adenal glands removed. I lost 100 pounds in about 6-8 months. I am now fighting to get the last 60 off, but now my thyroid is toast.

if I had given up the fight and let these doctors dictate my health, I would still be 380 pounds (or more), blood sugar in the 500's, BP was at stroke level. Or, I would be dead. Trust me...the less time you have this the less the damage to your body. I am 2.5 years out and still have bone and muscle loss. I also lost about 10 years off my life. Because the tumor was there so long and grown to the point that they couldn't remove it - I had to remove my adrenal glands. Therefore - one good flu or infection and I could die from it. I wish I had fought harder sooner.

[shelbyla]

Amity -

Just wanted to applaud you for your perseverance and success (of a sort) in getting your condition diagnosed. I've been through a similar struggle with my thyroid and adrenals and understand completely the frustration of the endless string of unsympathetic, closed-minded, and condescending doctors. I have ended on a course of self-treatment which is effectively managing my diseases (hypothyroid and hypo-adrenal) but I live in LA and would love for you to PM me your doctor's name as I suspect that he/she might have good local resources for thyroid and adrenal treatment.

Again, BRAVO to you for sticking up for yourself and sticking it out until you got heard!

[Amity79]

Hi Shelby,

We had talked before about this. I haven't been here in a while..How ya doing?

The Dr. I went to...and he is big in thyroid care as well, is Dr. Theodore Freidman. His website is Goodhormonehealth.com

His day job is Chief of Endocrinology at Charles Drew, so he has clinics one night a week.

I am having such a hard time with my thyroid and I know it needs a certain amount of cortisol to function properly. I just have a hard time balancing it all. I am on 10mg of hydrocortisone and 2 grains of NatureThroid. I have tried upping the hydro but no improvement...

[shelbyla]

Amity - sorry that I didn't remember! A bit of brain fry, I guess! It took me a number of months to get my dosing right with the HC and thyroid. Don't give up! Have you had the RT3 done? That can really block the T3 uptake if it's too high.

Starla - Sorry for the threadjack!

[Amity79]

No problem! Like I said...it's been awhile since I have been on here.


I have....it's been awhile (like 2 years)...and it was usually high/normal. I had upped my thyroid meds to 3 grains..and then 4 grains. It didn't seem to help so I backed back down. I think it is too low cortisol...but if I go up I start gaining again.

What's funny is that without adrenals...i can be as bad as I can possibly be and not gain at all. Up my cortisol just a smidge and it starts coming on.

[shelbyla]

If your RT3 was high/normal, you might have blocked cell receptors and the Naturethroid/Armour will just exacerbate the problem (9mcg T3 and 38 T4 will cause MORE RT3 if you have a conversion problem). Might want to have them do another RT3 and possibly try to clear the cell receptors (it takes about 12 weeks) with T3 only treatment. If you don't have enough T3, cortisol supplementation WILL cause you to gain for sure! Just a thought in case you're still digging.

[StarlaG]

Hello Amity79,

Thank you for responding to my post. My doctor is Dr.Amin Jamal in Memorial Hermann. He has been my endo since 2002. I visited him in March of this year. I spoke with him about Cushings syndrom because. He sent me to have blood test done and found out that I did not have it.

[Amity79]

Starla,

I certainly hope that you do not have it. But, I have very little faith that the testing done was sufficient to make a diagnosis. Like I said, I didn't find a single local doctor that knew about anything other than an 8am blood draw or a 24hr urine collection. They didn't understand that the tumor is cyclical and testing needs to be done more than once and over a period of time.

If you are producing higher than normal cortisol levels than this is a very strong indication that something is going on. I have seen people go through surgery and have miraculous recoveries with less evidence that you have already presented.

Also, keep in mind that this disease is WAY, WAY more common that med schools taught. It is only in the last 10 years that there has been some recognition of Cyclical Cushing's and that it is much more common.

I study in Italy showed that 11-12% of ALL DIABETICS actually had Cushing's. And those were only the easy to test ones....florid cased. This didn't take into account cyclical cases.
Think about just how many people that is. I didn't think I had it at first because I always heard it was "TOO RARE" ....my doctors didn't believe it because it was "TOO RARE". We were all proven wrong. So much time was wasted and so much damage that could have been avoided.

I know one person who's tumor was producing Growth Hormone and ACTH. She was skinny as could be. In her case the GH was countering the effects of the cortisol. She was cured with one surgery.

I know another whose tumor would morph from ACTH producing and prolactin producing over a course of weeks or months. Odd case. I also believe she was cured that first try.

Both of these cased had something else going on other than weight gain that made it easier to get the doctors attention and diagnose sooner. Therefore, one surgery was sufficient for a successful outcome. The longer a person waits, the more damage to the body and the harder it will be for a cure.

If you are afraid of the possibility and the thought of the surgery....I can attest to the fact that it is SOOOOOOO worth it and not that difficult. I can give you the names and numbers of a bunch of others who will tell you the same.

If you want to talk or know more about it please PM me and I will give you my number. I promise I don't preach...even though I know my post have sounded like it.

[Felina]

I too, have a hard time losing weight and can gain so easily. Normal people would be skinny as a stick if they ate what I eat. for years I have been begging different Drs to find out what is wrong with me. i am convinced that none of them believe me when I tell them what I eat. all they do is send me to classes where they teach calories in, calories out. Finally, after 20 years of this, I was succesful in getting a referral to an Endo.

My Endocrinologist diagnosed me with PCOS and put me on Metformin. He also set me up for some testing to determine if I might have Cushings. I did the 24 hour urine test recently and my cortisone level s high. My Dr is having me take a pill Sunday night and then have a blood test Monday am to confirm Cushings.

I'm so glad to learn from you guys that if the blood draw is negative for Cushings, I should insist on further testing.

Anyway, I have been successful with hcg, at least I'm losing, although a bit slower than most. I also gain more during loading than most people do. Low carb worked for weightloss for a while then the losses stopped, although I was able to maintain. I have to keep my carb level extremely low though.

For now hcg is the best thing for me but I am hopeful that the Endo will able to figure out what is going on with me.