Need help please for a seventeen year old with a pituitary problem

[EmeraldHope]

I just recently moved in with my best friend and her two daughters. We are having a major issue with the seventeen year old. The official diagnosis is as follows:


There is deformity of the sella turcica which is expanded and extends into the nasopharynx. The sella turcica appears to be expanded by a cystic mass (rathkey clef cyst) with pituitary gland and pituitary stalk displaced posteriorly and laterally. What appears the pituitary gland enhances diffusely. No supersellar extension is identified.


She has not had her period in several years. She has a lot of stomach issues and mood swings. As far as forum dietary guidelines go, she is not gluten or dairy free and still consumes natural sugars. In the last week the doctor put her on an elimination diet of chicken rice spinach and olive oil. The problems still persist. In the past they have done periods of sugar free and gluten free with no reduction of symptoms.


Lab tests that were out of range ( l- low h- high):


THS- .20 l
T3- 61 l
Thyroglobulin antibidoes 559 h
Thyroid Peroxidase antibodies 414 h
Prolactin - 26.2 h


They are saying that it is not recommended to operate on the cyst. I figured maybe someone here may know how best to proceed. Any help would be greatly appreciated. They have already seen a GI doctor and allergist and endocrinologist.

 

[Lilou]

I read up alittle bit about Rathke Cleft Cyst. In most people they are found only by accident. Meaning, most people remain asymptomatic and the cyst causes no problems.

What were the symptoms that prompted the doctor to do further testing? The most common symptoms are headache, visual disturbances and hormonal problems. Since she has some hormonal problems (no menses) it means that there is under activity of the pituitary gland - which can lead to a host of problems.

Are they going to just watch the cyst and see if it grows? The most common treatment is transsphenoidal surgery (relatively non invasive, done thru the nose) where they excise and drain the cyst. About 20% have a recurrence.

While diet is important, I do not know if it would cause the cyst to shrink. If it is already causing symptoms (which could become worse over time), it may be wise to seek a 2nd opinion and consider having it drained.

I don't know much regarding the lab test, but maybe others will. I hope all works out for this young lady, it's a lot to deal with at such a young age.

 

[EmeraldHope]

Basically the lack of the period is what led to the diagnosis. She had a period for a year about 4-5 years ago and was put on birth control to regulate it as she had it non stop for a year. Then birth control caused her to lactate. Then when the birth control was stopped the period never came back.


She is also highly sensitive and she "sees" things visually, which I know can be related to the pituitary/pineal in some way as well.


I do not know if this helps or not but she is 4'11 and a half and weighs 105 pounds. She was at 120 , then went down to 85 when she cut out the carbs and sugars.

 

[EmeraldHope]

Her mom said to also add that they did a colonoscopy and also the one which is done down the throat and found no issues, but she is experiencing pain and nausea all the time and has headaches frequently. They had thought is may have been her gall bladder , and removed it in June. It was working at only 20% capacity. She eats primarily low fat non GMO organic, and exercies frequenly as she is a dance and drama major in a magnet school here.


As I said they have tried gluten and sugar free with no relief of symptoms. Mom is standing right here and I am asking for help by her request. She is open minded and prefers natural solutions and does not like regular medicine.


Mom has been trying supplements. She has her on probiotics and Garden of Life for women multi vitamin and Wellness Resources Digestive helper. She is also on two more.- one for the thyroid and one for the pituitary- Thytrophin PMG and Pituitrophin PMG from Standard Process.


I thought maybe since the HPA was affected here perhaps 5 htp and melatonin may help with the mood, but I do not know enough for sure so we need all the help we can get. The digestive issues are really problematic. The doctors do not seem to have a clue.

 

[nicklebleu]

Modern medicine is certainly clueless, but I also feel that you need to be careful what supplements to give, because you may do the same mistake than MSM by throwing supplements at your friends daughter which are mutually exclusive.

I agree that a 2nd opinion should be sought, maybe from an experienced endocrine surgeon/ neurosurgeon.

But mor importantly I would try to find a doctor of functional or alternative medicine (see for instance _www.functionalmedicine.org or someone like Mark Hayman or Chris Kresser), because this problems involves one of the central endocrine control centers of the body with complex hormonal interplay. I would certainly advocate to change the diet gradually (if possible) towards paleo/ ketogenic, to eliminate all foods causing trouble, to detoxify (maybe even IV EDTA?), heal the gut (!!) etc. And she may well need some hormonal supplementation as well for a while - but again this is something that an experienced practitioner needs to administer and frequently check and adapt.

So in summary, I think that this requires a mixed approach - and my best bet would be to try to find an experienced doctor who understands both worlds - and depending on where you live that might be very hard to do!

Good luck!

 

[EmeraldHope]

Modern medicine is certainly clueless, but I also feel that you need to be careful what supplements to give, because you may do the same mistake than MSM by throwing supplements at your friends daughter which are mutually exclusive.

I agree that a 2nd opinion should be sought, maybe from an experienced endocrine surgeon/ neurosurgeon.

But mor importantly I would try to find a doctor of functional or alternative medicine (see for instance _www.functionalmedicine.org or someone like Mark Hayman or Chris Kresser), because this problems involves one of the central endocrine control centers of the body with complex hormonal interplay. I would certainly advocate to change the diet gradually (if possible) towards paleo/ ketogenic, to eliminate all foods causing trouble, to detoxify (maybe even IV EDTA?), heal the gut (!!) etc. And she may well need some hormonal supplementation as well for a while - but again this is something that an experienced practitioner needs to administer and frequently check and adapt.

So in summary, I think that this requires a mixed approach - and my best bet would be to try to find an experienced doctor who understands both worlds - and depending on where you live that might be very hard to do!

Good luck!

I did not want to just recommended anything because I do not know enough. The supplements that she is on are being given by the mom.


Any type of natural doctor is out of the question right now due to finances. I moved in to help as the mom has been missing tons of work due to these medical issues and hospital visits and the bills are over 30 thousand now. The oldest daughter and I are paying the bulk of the bills and mom is doing what she can from a freelance perspective to also have time off to do the visits to the doctors, tests etc. The insurance she does have does not cover any form of natural or alternative approach.


We just do not know what to do, and neither do all of these doctors. I know there cannot be any type of diagnosis or anything like that, but maybe a point in a direction that we have not looked at, or maybe something in the blood work stands out to someone. I just figured it could not hurt to ask.

 

[Lilou]

They removed her gall bladder? And did upper and lower GI testing - because of the symptom of nausea? I just don't know what to say, other than love her heart. The medical system is putting her through a lot of unnecessary stuff. OSIT.

If you google Ratke Cleft Cyst, there are several experts in this field and it would be worth a consult. From what I read, if the pituitary gland is not functioning properly, it will affect all other hormones, including insulin (the master hormone) and could lead to insipidus diabetes. If the cyst continues to put pressure on the surrounding structures, the consequences could be devasting - ie) loss of vision, infertility. This hormonal imbalance could also be causing the GI problems and were likely the cause of low gall bladder function. The headaches and visual disturbances are likely from the pressure the cyst is putting on the surrounding structures. It sounds to me like she would benefit from having it drained.

Do some research and see if you can find someone close enough who is an expert on Ratke Cyst and try to get a consult, ASAP. That is my best advice. As for supplements - I'd say less is more - until you consult an expert in this field. I do not think a naturopathic doctor will be much help until the root of the problem is addressed.

 

[Olesya]

Daenerys, in case you've missed it, you might want to read this thread http://cassiopaea.org/forum/index.php/topic,32116.msg435118.html#msg435118. The connection between pituitary gland abnormalities and PCOS was mentioned. I think she needs to change her diet ASAP, and the first thing to do is to eliminate milk and milk products completely, osit, because those are the main sources of artificial GHBH.

 

[EmeraldHope]

They removed her gall bladder? And did upper and lower GI testing - because of the symptom of nausea? I just don't know what to say, other than love her heart. The medical system is putting her through a lot of unnecessary stuff. OSIT.

If you google Ratke Cleft Cyst, there are several experts in this field and it would be worth a consult. From what I read, if the pituitary gland is not functioning properly, it will affect all other hormones, including insulin (the master hormone) and could lead to insipidus diabetes. If the cyst continues to put pressure on the surrounding structures, the consequences could be devasting - ie) loss of vision, infertility. This hormonal imbalance could also be causing the GI problems and were likely the cause of low gall bladder function. The headaches and visual disturbances are likely from the pressure the cyst is putting on the surrounding structures. It sounds to me like she would benefit from having it drained.

Do some research and see if you can find someone close enough who is an expert on Ratke Cyst and try to get a consult, ASAP. That is my best advice. As for supplements - I'd say less is more - until you consult an expert in this field. I do not think a naturopathic doctor will be much help until the root of the problem is addressed.

We have an appointment with a pituitary specialist in mid September to see about possibly adding hormones and getting a second opinion. The cyst is very large. The gall bladder was removed because it was tested and found not to be working properly. They said that was hereditary. A lot of the symptoms were similar to moms and hers went away when her gall bladder was removed.


The upper and lower GI testing were done before the gall bladder testing came back to see if the problem was in the GI due to the pain and nausea.


The problem with having the surgery even if the second opinion states to do it, is the side affects that come with it . The success rate is slim and most of them come back.


We are mainly trying to find the root of the pain and nausea which we do not know for sure is associated with the pituitary issue, but it is one of the listed symptoms. We have been trying to rule everything out. Since it is a cyst that the medical industry says cannot be shrunken, we are having to deal with the symptoms. Any relief we can provide would help. Anything that anyone can suggest that may would help the pituitary function in a compromised state would be great.




I will also have mom look at the thread that Oleysa posted.

 

[Olesya]

Daenerys, in case you've missed it, you might want to read this thread http://cassiopaea.org/forum/index.php/topic,32116.msg435118.html#msg435118. The connection between pituitary gland abnormalities and PCOS was mentioned. I think she needs to change her diet ASAP, and the first thing to do is to eliminate milk and milk products completely, osit, because those are the main sources of artificial GHBH.

My apologies, Daenerys, please disregard what I wrote in my post. I was too hasty and missed the fact that at 17 years old the hight of the girl is only 4'11'', therefore, she most likely has GH ( growth hormone) deficiency. Was GH test done?

I found a couple of articles on the topic.

From _Microadenoma-and-Rathkes-Cyst/show/1328006

My Rathke's had a tendency to shrink and expand. At one point it expanded and caused my pituitary stalk to deviate. Because Rathke's are so much closer to the hypothalamus they can bring there own set of problems if they affect your hypothalamus.
So yes these would certainly make you feel tired, gain weight, hyper emotional, and even contribute to insomnia and achey (achy). Whether you decide on surgery or not your hormones can be corrected and this will help you to feel better. The one hormone that will not be given is Growth hormone if you have active growths. Unfortunately Growth hormone is usually the first hormone to go (if you don't have a growth hormone secreting adenoma) and it plays a big role in our well being.

From _http://www.surgicalneurologyint.com/article.asp?issn=2152-7806;year=2012;volume=3;issue=1;spage=42;epage=42;aulast=Munich

The natural history of RCCs is poorly understood, but high rates of recurrence after surgical resection have been reported. [1],[3],[15],[16],[18] Surgical drainage of the cyst and biopsy of the cyst wall or surgical cyst excision, most frequently through a transsphenoidal approach, are considered for symptomatic patients. [3],[15],[18],[20] However, instances of cyst reduction associated with corticosteroid replacement therapy have been reported. [8],[17] Recently, Amhaz et al. [2] described nine cases of spontaneously resolving RCCs. In their series, only one patient was receiving steroid replacement therapy (with intranasal fluticasone). Although the phenomenon of a spontaneously involuting RCC rarely has been reported previously, the mechanism by which it occurs remains speculative. [12],[17],[19],[20],[25],[29] In addition, these reports have been in adolescents (with the youngest patient being 14 years old) and adults.

 

[Gaby]

I agree that a 2nd opinion should be sought, maybe from an experienced endocrine surgeon/ neurosurgeon.

I second this. This could be a problem that could be treated from a mainstream medical point of view. Treatment could be even only temporary.

The alternative approach is very important too! But I would get a second opinion and battery of tests. It can be extremely discouraging to go through all that, but in the long run, it is best to cover all bases.

Another thing is that she has thyroid antibodies. This is almost always the case where there is gluten intolerance. If she removes all gluten sources, and casein for good measure, this autoimmune reaction might calm down and thyroid function will no longer suffer from that aspect. Careful with hidden sources which could be firing up these antibodies despite a good effort to remove all gluten grains.

 

[Lilou]

When was the young lady diagnosed with the Rathke Cleft Cyst? Was this before or after the gall bladder surgery?

It is a shame they were not able to diagnose the cyst 5 years ago when she had the original hormonal problems. From what I've read, the sooner it is drained, the better, because the cyst is a fluid filled sac made of a thin membrane - which is easy to lance. As time goes by, the wall of the cyst may calcify and become hard as a rock. If that happens, then the surgery goes from a relatively non-invasive, low risk surgery, to an open skull, higher risk surgery.

Have they done an MRI and a CT scan? The MRI is usually done for the initial diagnosis - just to find it. Then a CT scan should be done to provide more details on exact location and hopefully be able to tell how thick the cyst membrane is. Have they determined if it is calcified?

There are a few specialists for this in Orlando, Florida. If you can obtain the digital copy of her MRI and CT scan, it may be worthwhile to have a few online consults. Even if they charge a small fee, this would give you more opinions without having to travel. Here's one link _http://brainmis.com/Main/Default.aspx This site claims 80-90% are totally removed, and 5-15% recurrence within 10 years. But most importantly, the return of normal hormone function.

The only thing I read about that may shrink the cyst is a regiman of steroids/combined with replacement hormones. The hyperactive thyroid is another side effect of the cyst, very common. If they are able to drain it, all the hormones will return to normal - save for the missing gall bladder. Without the gall bladder, she will need digestive enzymes (with ox bile). This could be a reason for the nausea.

Wishing you all luck with the specialist next month. I think the best thing is to be as informed as you can be regarding this type of cyst and make informed choices.

 

[Laura]

Keep in mind that all gluten sources (and dairy) have to be removed for over six months before the body begins to recover from their effects. And then, it can take up to two years for the gut to heal.

Another thing to check would be the iron panel because iron overload selectively targets the endocrine glands.

If it was my kid, I'd be feeding her veal and small, oily fish and for veggies, just light salads and steamed green beans or carrots with a bit of instant mashed potatoes for an "elimination" test. Then add in bone broth. She may need digestive enzymes or betaine hcl.

 

[EmeraldHope]

Thanks. Will give these suggestions to mom and see where this goes.