Looking for others with Pituitary Adenoma

Posted by dmedina71 @dmedina71, May 3, 2016

I like to now if their is anyone who has been diagnosed with Pituitary Adenoma

Interested in more discussions like this? Go to the Brain Tumor group.

@hopef

Hello to all. I recently was diagnosed with a nonfunctioning pituitary macroadenoma on March 3 rd and had Transphenoidal removal on March 8. I must say that I am very grateful that I was able to have surgery. My case was complicated by having severe epistaxis post-op where I had to go back and get vessel cauterization. My hemoglobin dropped from 12 to 7, I had to have a blood transfusion (which I never had in my life). I also had uncontrolled high blood pressure which I was placed on new BP meds that reduced by BP from 170's/130's to 120's/70's, nowever my heart rate became elevated during my stay, from 100-150's. I was orthostatic as well. I stayed in the hospital longer than expected. I was so happy to get out, however I must say I am far from feeling well. I orignally went to be evaluated due to have daily headaches since November. Although they would be relieved by exedrin, they would return. The headaches are no longer, however I am greatly fatigued, always tired, sometimes I feel jittery, almost a fogginest feeling when standing and walking and I am starting to feel nauseous daily now. Initally post-op, I did go into Diabetes Insipidus, and then SIADH follow; however I didn't suffer from hyonatremia as of yet because I was pre-emptively placed on a fluid restriction of no more than 1 liter in 24 hours. I was also placed on hydrocortisone 20 mg in the morning and 10 mg in the evening. I was kind of skeptical of this because all of my hormone levels were within the normal range. The biopsy of the tumor showed that it was a corticotroph adenoma likely ACTH. I am just wondering why I am feeling nauseaous and lightheaded/or fogginess, if this is part of the healing process or if it is signs of hormonal difficiencies. My providers wanted to increase my hydrocortisone to 20mg in am and 20 mg in pm, but I am skeptical because I don't want it to suppress my HPA of producing cortisol naturally because I don't want to be taking these medications or having to suffer from withdrawal symptoms once they try to taper me off of them. Can anyone else tell me about their journey post op? Is this normal, to be expected?

Jump to this post

It has been 11 years since my first transphenoidal resection of a Rathke's cyst – which is also a pituitary tumor. Mine was located on the optic nerve. They put me into a HUGE room and kept me for 10 days. That room was bigger than my entire house! Something didn't go as planned during my surgery – although I never found out what exactly went wrong. I may have to get all my paperwork out to see if anything you are saying is the same as what they said for me. I do know that up until last year – we were still adjusting my meds. I have to take 0.25 mg of dexamethasone in the evening. I had my choice of hydrocortisone or dexamethasone – and I chose the latter. My adrenals were shut down, my thyroid was shut down, I had very little human growth hormone, and I have diabetes insipidus and have had it my entire life. So I was probably born with most of this. If I don't take the dexamethasone, I will sleep at least 23 hours a day – the doctor told me I would go into a coma without it. You are going to be your own science experiment until everything settles down and you get everything adjusted. I take Armour thyroid and last year I pushed myself to get up to 90 mg and I now feel like I am alive.

But if you are now taking steroids – you need to listen to me very carefully. You need to get a book called The Candida Cure by Ann Boroch. Do it NOW – it's on Amazon if you cannot find it at your favorite book store. I didn't do it right away – nobody warned me. I developed candida overgrowth from taking that tiny bit of steroid. I was so dizzy, nauseated, bloated, didn't feel like eating anything (except in hindsight, I now know I was only able to eat food high in sugar because sugar feeds the candida). I had floaters in my eyes and I became extremely sensitive to any kind of perfume or cigarette smoke. My neighbor smokes and I couldn't be around her. I was lightheaded and I felt strange all the time. Brain fog. SO MUCH brain fog. It can happen so fast. I hvae been on the candida diet for six years as of 4/2, and I have to tell you – I feel like a new woman. If you decide to do it and you want support, just let me know. I have recipes and support for you. It seems so daunting at first – but I had become so ill, I literally had a handful of pills I planned to take to kill myself. I wound up only taking one pill – and I was going to reassess the situation when I woke up. When I woke up – I KNEW I had candida overgrowth. I mentioned it to a friend who told me to get that book. I downloaded the book to my kindle and by evening I was on the diet and all my old food had been given away. I haven't looked back yet. I feel like I'm in my 20s again (I am 70). This diet has given me my life back. Getting the tumor out was step 1 – and going on this diet was step 2. I didn't know it, but the GI doctor had found candida in my esophagus earlier that year – and he told me it was because of the steroids. But he didn't know how much brain fog I had – I spaced it out. Don't do what I did! This is your new normal – so now you have to adjust to it. People are eating way too much sugar and they don't even realize it. They have put sugar into everything – if you don't believe me – look at your box of salt – you will likely see dextrose listed. They have added sugar to a lot of the milk supply – but milk already has sugar in it. And there is this big push to drink juice – which is full of sugar. I waited so long, I cannot even eat root vegetables without breaking out in hives – too much sugar!

You will continue to get better. This isn't over until you are comfortable. Just take it one thing at a time. Let your body adjust after each change you make. You are lucky your doctor listens to you about headaches. I have constant migraines and bad headaches and I cannot get relief. The doctor that follows me at UCSF says "I don't deal with headaches. Get another doctor for that." It is so frustrating. Do you have an endocrinologist helping you navigate all of this? A word of warning: When I told my neuro-endocrinologist that I got candida from the steroids he gave me – he broke his pencil and threw it at the wall and yelled. He is usually a very reserved man!!! They don't like to hear it. So I just went on my diet and didn't say anymore about it to him. But that is exactly what caused me to have candida overgrowth. Basically, the steroids (or antibiotics or hormones) cause an imbalance in your gut. Those drugs wipe out the bacteria in your gut – both the bad and the good. The good bacteria keeps the candida from overgrowing. But if the good bacteria is wiped out, the candida overgrows and takes over. Candida overgrowth is a relatively new disease because these drugs haven't been in such widespread use until about the 1980s or so. Not one doctor would tell me this was my problem!!! They knew it but wouldn't tell me. One doctor said "I figured you wouldn't stay on the diet." I am still furious with her for that. She let me get suicidal and didn't say a word (she is no longer my doctor). Doctors will not talk about this. If you have the money, get yourself a functional doctor. Even a nutritionist could help. But I did it all myself – using that book as a springboard. And in the six years I have been on the diet – there are more and more delicious things being made for people who cannot tolerate sugar. I can go into certain grocery stores and pick up a snack – whereas when I first started the diet, I had to cook everything from scratch. More and more people are going off sugar. If you go off sugar, you will feel 100 times better and you will discover you are not nearly so likely to die of cancer, heart disease, Alzheimer's, the list is very long. I've been told I have cancer twice in the past three years and so far it hasn't been true at all. This is very likely why you are feeling a bit off.

Whatever you do, I wish you luck. I will try to log on more often to see if you post. I hope I have helped.

Oh – by the way, I used a good probiotic twice a day, herbal antifungals three times a day (and I cook with things like garlic, oregano, apple cider vinegar, etc. – which are all antifungal. I use CBD (from cannabis – not hemp) for pain once a day and that is antifungal, too. I did nOT do any of the "organ cleanse" protocols in the book – I think they are hard on the body and also your organs will cleanse theirselves. So you don't have to worry about that. If you decide to do the diet, I will be happy to help you out.

Elizabeth

REPLY
@parrotqueen

It has been 11 years since my first transphenoidal resection of a Rathke's cyst – which is also a pituitary tumor. Mine was located on the optic nerve. They put me into a HUGE room and kept me for 10 days. That room was bigger than my entire house! Something didn't go as planned during my surgery – although I never found out what exactly went wrong. I may have to get all my paperwork out to see if anything you are saying is the same as what they said for me. I do know that up until last year – we were still adjusting my meds. I have to take 0.25 mg of dexamethasone in the evening. I had my choice of hydrocortisone or dexamethasone – and I chose the latter. My adrenals were shut down, my thyroid was shut down, I had very little human growth hormone, and I have diabetes insipidus and have had it my entire life. So I was probably born with most of this. If I don't take the dexamethasone, I will sleep at least 23 hours a day – the doctor told me I would go into a coma without it. You are going to be your own science experiment until everything settles down and you get everything adjusted. I take Armour thyroid and last year I pushed myself to get up to 90 mg and I now feel like I am alive.

But if you are now taking steroids – you need to listen to me very carefully. You need to get a book called The Candida Cure by Ann Boroch. Do it NOW – it's on Amazon if you cannot find it at your favorite book store. I didn't do it right away – nobody warned me. I developed candida overgrowth from taking that tiny bit of steroid. I was so dizzy, nauseated, bloated, didn't feel like eating anything (except in hindsight, I now know I was only able to eat food high in sugar because sugar feeds the candida). I had floaters in my eyes and I became extremely sensitive to any kind of perfume or cigarette smoke. My neighbor smokes and I couldn't be around her. I was lightheaded and I felt strange all the time. Brain fog. SO MUCH brain fog. It can happen so fast. I hvae been on the candida diet for six years as of 4/2, and I have to tell you – I feel like a new woman. If you decide to do it and you want support, just let me know. I have recipes and support for you. It seems so daunting at first – but I had become so ill, I literally had a handful of pills I planned to take to kill myself. I wound up only taking one pill – and I was going to reassess the situation when I woke up. When I woke up – I KNEW I had candida overgrowth. I mentioned it to a friend who told me to get that book. I downloaded the book to my kindle and by evening I was on the diet and all my old food had been given away. I haven't looked back yet. I feel like I'm in my 20s again (I am 70). This diet has given me my life back. Getting the tumor out was step 1 – and going on this diet was step 2. I didn't know it, but the GI doctor had found candida in my esophagus earlier that year – and he told me it was because of the steroids. But he didn't know how much brain fog I had – I spaced it out. Don't do what I did! This is your new normal – so now you have to adjust to it. People are eating way too much sugar and they don't even realize it. They have put sugar into everything – if you don't believe me – look at your box of salt – you will likely see dextrose listed. They have added sugar to a lot of the milk supply – but milk already has sugar in it. And there is this big push to drink juice – which is full of sugar. I waited so long, I cannot even eat root vegetables without breaking out in hives – too much sugar!

You will continue to get better. This isn't over until you are comfortable. Just take it one thing at a time. Let your body adjust after each change you make. You are lucky your doctor listens to you about headaches. I have constant migraines and bad headaches and I cannot get relief. The doctor that follows me at UCSF says "I don't deal with headaches. Get another doctor for that." It is so frustrating. Do you have an endocrinologist helping you navigate all of this? A word of warning: When I told my neuro-endocrinologist that I got candida from the steroids he gave me – he broke his pencil and threw it at the wall and yelled. He is usually a very reserved man!!! They don't like to hear it. So I just went on my diet and didn't say anymore about it to him. But that is exactly what caused me to have candida overgrowth. Basically, the steroids (or antibiotics or hormones) cause an imbalance in your gut. Those drugs wipe out the bacteria in your gut – both the bad and the good. The good bacteria keeps the candida from overgrowing. But if the good bacteria is wiped out, the candida overgrows and takes over. Candida overgrowth is a relatively new disease because these drugs haven't been in such widespread use until about the 1980s or so. Not one doctor would tell me this was my problem!!! They knew it but wouldn't tell me. One doctor said "I figured you wouldn't stay on the diet." I am still furious with her for that. She let me get suicidal and didn't say a word (she is no longer my doctor). Doctors will not talk about this. If you have the money, get yourself a functional doctor. Even a nutritionist could help. But I did it all myself – using that book as a springboard. And in the six years I have been on the diet – there are more and more delicious things being made for people who cannot tolerate sugar. I can go into certain grocery stores and pick up a snack – whereas when I first started the diet, I had to cook everything from scratch. More and more people are going off sugar. If you go off sugar, you will feel 100 times better and you will discover you are not nearly so likely to die of cancer, heart disease, Alzheimer's, the list is very long. I've been told I have cancer twice in the past three years and so far it hasn't been true at all. This is very likely why you are feeling a bit off.

Whatever you do, I wish you luck. I will try to log on more often to see if you post. I hope I have helped.

Oh – by the way, I used a good probiotic twice a day, herbal antifungals three times a day (and I cook with things like garlic, oregano, apple cider vinegar, etc. – which are all antifungal. I use CBD (from cannabis – not hemp) for pain once a day and that is antifungal, too. I did nOT do any of the "organ cleanse" protocols in the book – I think they are hard on the body and also your organs will cleanse theirselves. So you don't have to worry about that. If you decide to do the diet, I will be happy to help you out.

Elizabeth

Jump to this post

Hi Elizabeth! First I would like to say thank you for reading my post and responding. I am new to this and I have been trying to find a support group where people have undergone pituitary removal and see what their post op journey has been. Surprisingly enough I haven’t found to much out here. I appreciate you sharing your experience with changing your diet. I may read up on it, but right now my focus is on my post op recovery and hopefully getting off of these steroids. I’m surprised that you even checked the post. It seems like there is no recent activity in this forum.

REPLY

Hello @hopef and welcome to Mayo Clinic Connect. I can see the Elizabeth has responded to you with what has worked well for her to give you some things to potentially consider.

When was the last time you had bloodwork done? Do you think it may be worth starting there to see if your levels are reasonable?

REPLY

I was diagnosed with Cushing's Disease in 2015 and had a pituitary tumor removed. The surgeon felt that he was able to get the tumor. I see my endocrinologist every 6-12 months for bloodwork. So far so good.
Just a couple of reflections from my surgery: Initially, I felt pretty good. A few days after I returned home, I developed a killer headache. I had had migraines most of my adult life but this was worse. I started feeling confused. I went to the ER and it turned out my sodium level had crashed. It took several days in the hospital to get it back to normal. My surgeon said it was not uncommon.
I found recovery a bit difficult. First of all, finding the right amount of steroids and then weaning off of them was a bit difficult. In addition, I was not able to keep food down for several weeks.
I am happy to say that all is well now.
I am interested to know about any long-term effects you have had after recovery from Cushing's Disease. Thanks.

REPLY

@drs22 – Hi! First- congratulations on having a successful surgery.
My experience with Cushing’s comes from caring for my daughter after surgery.
She had pituitary adenoma removed 2010 at age 27.
It seems ease of recovery depends on years of exposure to high cortisol levels. My daughter apparently had mild symptoms on and off for years- came and went.
Immediate postop period was pretty bad, going from high levels of cortisol to zero and then finding the right hydrocortisone replacement dose.
She had severe body pain and was treated by a pain management doctor.
There was gradual improvement and a year later she started a pre- med program at Harvard ! However- that’s when she found out she had cognitive and memory problems. She basically had to work twice as hard to overcome this.
She decided not to pursue medicine- it would be a stress on her body.
Fatigue lingers. She is physically very active and intellectually functions like before surgery.
One thing bothers us- there is not much direct information from the medical team on how life actually is after surgery.

REPLY
@parrotqueen

It has been 11 years since my first transphenoidal resection of a Rathke's cyst – which is also a pituitary tumor. Mine was located on the optic nerve. They put me into a HUGE room and kept me for 10 days. That room was bigger than my entire house! Something didn't go as planned during my surgery – although I never found out what exactly went wrong. I may have to get all my paperwork out to see if anything you are saying is the same as what they said for me. I do know that up until last year – we were still adjusting my meds. I have to take 0.25 mg of dexamethasone in the evening. I had my choice of hydrocortisone or dexamethasone – and I chose the latter. My adrenals were shut down, my thyroid was shut down, I had very little human growth hormone, and I have diabetes insipidus and have had it my entire life. So I was probably born with most of this. If I don't take the dexamethasone, I will sleep at least 23 hours a day – the doctor told me I would go into a coma without it. You are going to be your own science experiment until everything settles down and you get everything adjusted. I take Armour thyroid and last year I pushed myself to get up to 90 mg and I now feel like I am alive.

But if you are now taking steroids – you need to listen to me very carefully. You need to get a book called The Candida Cure by Ann Boroch. Do it NOW – it's on Amazon if you cannot find it at your favorite book store. I didn't do it right away – nobody warned me. I developed candida overgrowth from taking that tiny bit of steroid. I was so dizzy, nauseated, bloated, didn't feel like eating anything (except in hindsight, I now know I was only able to eat food high in sugar because sugar feeds the candida). I had floaters in my eyes and I became extremely sensitive to any kind of perfume or cigarette smoke. My neighbor smokes and I couldn't be around her. I was lightheaded and I felt strange all the time. Brain fog. SO MUCH brain fog. It can happen so fast. I hvae been on the candida diet for six years as of 4/2, and I have to tell you – I feel like a new woman. If you decide to do it and you want support, just let me know. I have recipes and support for you. It seems so daunting at first – but I had become so ill, I literally had a handful of pills I planned to take to kill myself. I wound up only taking one pill – and I was going to reassess the situation when I woke up. When I woke up – I KNEW I had candida overgrowth. I mentioned it to a friend who told me to get that book. I downloaded the book to my kindle and by evening I was on the diet and all my old food had been given away. I haven't looked back yet. I feel like I'm in my 20s again (I am 70). This diet has given me my life back. Getting the tumor out was step 1 – and going on this diet was step 2. I didn't know it, but the GI doctor had found candida in my esophagus earlier that year – and he told me it was because of the steroids. But he didn't know how much brain fog I had – I spaced it out. Don't do what I did! This is your new normal – so now you have to adjust to it. People are eating way too much sugar and they don't even realize it. They have put sugar into everything – if you don't believe me – look at your box of salt – you will likely see dextrose listed. They have added sugar to a lot of the milk supply – but milk already has sugar in it. And there is this big push to drink juice – which is full of sugar. I waited so long, I cannot even eat root vegetables without breaking out in hives – too much sugar!

You will continue to get better. This isn't over until you are comfortable. Just take it one thing at a time. Let your body adjust after each change you make. You are lucky your doctor listens to you about headaches. I have constant migraines and bad headaches and I cannot get relief. The doctor that follows me at UCSF says "I don't deal with headaches. Get another doctor for that." It is so frustrating. Do you have an endocrinologist helping you navigate all of this? A word of warning: When I told my neuro-endocrinologist that I got candida from the steroids he gave me – he broke his pencil and threw it at the wall and yelled. He is usually a very reserved man!!! They don't like to hear it. So I just went on my diet and didn't say anymore about it to him. But that is exactly what caused me to have candida overgrowth. Basically, the steroids (or antibiotics or hormones) cause an imbalance in your gut. Those drugs wipe out the bacteria in your gut – both the bad and the good. The good bacteria keeps the candida from overgrowing. But if the good bacteria is wiped out, the candida overgrows and takes over. Candida overgrowth is a relatively new disease because these drugs haven't been in such widespread use until about the 1980s or so. Not one doctor would tell me this was my problem!!! They knew it but wouldn't tell me. One doctor said "I figured you wouldn't stay on the diet." I am still furious with her for that. She let me get suicidal and didn't say a word (she is no longer my doctor). Doctors will not talk about this. If you have the money, get yourself a functional doctor. Even a nutritionist could help. But I did it all myself – using that book as a springboard. And in the six years I have been on the diet – there are more and more delicious things being made for people who cannot tolerate sugar. I can go into certain grocery stores and pick up a snack – whereas when I first started the diet, I had to cook everything from scratch. More and more people are going off sugar. If you go off sugar, you will feel 100 times better and you will discover you are not nearly so likely to die of cancer, heart disease, Alzheimer's, the list is very long. I've been told I have cancer twice in the past three years and so far it hasn't been true at all. This is very likely why you are feeling a bit off.

Whatever you do, I wish you luck. I will try to log on more often to see if you post. I hope I have helped.

Oh – by the way, I used a good probiotic twice a day, herbal antifungals three times a day (and I cook with things like garlic, oregano, apple cider vinegar, etc. – which are all antifungal. I use CBD (from cannabis – not hemp) for pain once a day and that is antifungal, too. I did nOT do any of the "organ cleanse" protocols in the book – I think they are hard on the body and also your organs will cleanse theirselves. So you don't have to worry about that. If you decide to do the diet, I will be happy to help you out.

Elizabeth

Jump to this post

I so appreciated your post.
I am very interested in understanding more about Candida.
I was diagnosed with a macroaednoma November 2020.
I have been dealing with symptoms for so many years.
Finally, the magic sentence was,
"If it was your wife, or your daughters coming to you with these problems, your advice would be, 'Don't worry about it. We will do paps every year, and as long as we don't find any polyps, you should be fine.'"
I had been telling my Dr that I have not had a cycle for more that 5 years, now. and was only in my mid 30's. I have no chance of having any children, now.

I think I may have gotten off topic. I apologize. I didn't mean to rant.

Back to the topic. I would love to understand more about Candida, if you would be so kind. Are there any general tips you would be willing to pass on?

Thank you, in advance.
Pinky

REPLY
@pinkyandthebrain

I so appreciated your post.
I am very interested in understanding more about Candida.
I was diagnosed with a macroaednoma November 2020.
I have been dealing with symptoms for so many years.
Finally, the magic sentence was,
"If it was your wife, or your daughters coming to you with these problems, your advice would be, 'Don't worry about it. We will do paps every year, and as long as we don't find any polyps, you should be fine.'"
I had been telling my Dr that I have not had a cycle for more that 5 years, now. and was only in my mid 30's. I have no chance of having any children, now.

I think I may have gotten off topic. I apologize. I didn't mean to rant.

Back to the topic. I would love to understand more about Candida, if you would be so kind. Are there any general tips you would be willing to pass on?

Thank you, in advance.
Pinky

Jump to this post

I am older and don’t personally have any insight, but there is a great support group I belong to on FB called PanHypoPituitarism. There are members on there who deal with fertility issues (and some have had babies!) I’ve learned so much from this group.

REPLY
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