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Brain/Pituitary Tumors Community
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765439 tn?1292960414

lets settle this once and for all(pit tumors function o ncognition)

as you all know  i got an mri done march 2009,and they found a 2mm miroadenoma which theyve done nothing about. anyway,ive noticed my cognition has been declining at an exponentially fast rate. knowing what  i know about hoe slow pit tumors grow, i think i might have had this sine  i was in the 5th grade. i am 20 now,but i noticed 6th grade i started feeling dumber....needless to say i just got fired from my new job after working 6 shifts cause  ididnt know how to peel a banana..sad  i know.

anyway,my dad keeps insisting that the neuros are correct,and this tumor isnt whats impairing my functioning. i would like to think this tumor is the source of all my pain so i can find a doctor to remove it..although thats easier said than done obviously.

also what do  you guys think about cyberknife? i see nasty sideeffects although my neuro claims it is side effect free.

im ginally going for my mri that ive been putting off.

rumpled im going to st barnabas in livingston lie you suggested. i just say id like an mri done on a 3t machine and id like the method to be dynamic contrast right
64 Responses
875426 tn?1325528416
I've heard cyberknife is the next step beyond gamma knife in technology.  However, I thought they usually reserve that kind of thing for people who have already had pituitary surgery and the tumor has grown back, being that the pituitary is so very small and if any surrounding tissue of the gland got the rays, it could potentially affect a person.
765439 tn?1292960414
Thanks SurgiMenopause
yeah id rather just find a doctor who will do endoscopic. if  i had it my way thats what id do...i doubt a doc will even do cyberknife.

any thoughts on my main questions?
596605 tn?1369946627
Hi-

There are two parts to assess a pituitary adenoma.

The first is a magnetic resonance scan (MRI), with specific views of the sella turcica. This is what you are doing now. You are trying to get the best quality MRI possible by going to a facility that has the Tesla and that will do dynamic. The MRI will provide the anatomic information to about your tumor. Whatever comes of this can also be compared to your original scan to see if there are any changes.

The second part of your evaluation is a full endocrinological evaluation to determine whether hormone levels have been affected by the tumor.
Where are you with this part? Without any hormonal stuff I doubt that any doctors will consider surgery or Cyberknife.

This is stuff that I pulled off of the net: "Cyberknife is an alternative to surgery. It is radiation targeted at the growth and the smaller the growth the better it works. But there can be side effects from the radiation. And the radiation can kill off healthy tissue too. Since both the pituitary and the hypothalamus (another important hormone control center) receive radiation during treatment, nearly half the patients treated with conventional radiation will eventually develop abnormally low hormone levels (hypopituitarism)." So the cyberknife is more precise but it can cause probs.

But I think that this is why Cyberknife it is used more with tumors that cannot be reached via the endoscopic method or as a second procedure. The good things that I've read is that it is painless, there's no blood loss, it is done in an outpatient setting etc.

....off of the net:
Who should get CyberKnife Radiosurgery?

There is a subset of patients with pituitary adenoma that is particularly suited to undergo CyberKnife radiosurgery:

   1. Patients with small tumors that overproduce a pituitary hormone
   2. Patients who have residual tumor after transsphenoidal surgery
   3. Patients with hormone-producing tumors, who continue to have higher than normal hormone levels after surgery
   4. Patients with adenoma that has invaded the cavernous sinus
   5. Patients who are either unwilling or unable to have transsphenoidal surgery.

I think that your plan to get another MRI is a good next step. And yes you might fit into that group 5 above if you are pushing for surgery or Cyberknife treatment. Just keep in mind that you might end up going through all of this and end up with a non-functioning pituitary gland and the same symptoms like crappy cognition. It is still unknown whether your symptoms are due to your adenoma.

Yes you have this gut feeling, which should not be disregarded. You believe that this tumor is the cause of all of your woes but I fear that it may cloud your judgement if you shut out other possibilities. So be careful, be methodical and get good doctors.

You might bring your father with you to your appt with the neuro after the MRI. Because at some point, he is going to have to believe in you or you are going to have to get your own insurance and find support from someone else.

Good luck on your MRI.
Horselip
765439 tn?1292960414
so now im confused sorry. whats a tesla mri? do iask them to give me a tesla mri? or do i say i want a 3t mri with dynamic contrast? i want to get this right. if i get a normal mri again the tumor will show up small..if  i have a tumor thats bigger than the mri is showing the best way is to get the 3t. plus im scared of mris, and  i dont feel comfortable with the solution they inject so i wanna get it right!

so are you saying you are unsure whether the pit tumor is causing my cognition problems? i just wish it was, i used to so much more alert and now i feel like icant think or function at all. its really lame. nothing gets encoded into my head.

my dads been to my appointments. he cares about his all,but all the neuros say im fine. they say a few other members on this board are fine as well,yet they are in bad shape like me. north48 even had the mayoclinic say shes ok,and the mayo clincic is known as the  worlds best hospital! and her story is similar to mine.

my hormones vary a lot. one test my testosterone was 240, another it was 450, and another it was 880. my prolactin is not even close to low it looks a good number. my thyroids are in the normal ranges,however i asked on the thyroid forums and they are off by enough to cause me symptoms since most doctors are incompetent about thyroids. my platelet count,hematocrit,and hemoglobin numbers were low but doctors didnt even tell me  ihad to look that up. my transferrin saturation was 50 percent on a range of 1-52  i think im not sure.
Avatar universal
COMMUNITY LEADER
The T stands for tesla. 1.5 tesla. 3 tesla. That is how MRIs are *rated* for the strength of magnet.
Neuros cannot treat pituitary. See a doctor that knows pituitary.
765439 tn?1292960414
so what mri do i asked for exactly?
a 3 tesla mri done with dynamic contrast?
hey rumpled does the microadenoma have any effect on cognition like my original post was asking? im still confused on this?

i dont know of any other doctor who knows pituitary than a neuro? even the doctors on pituitary.org are ****. i was gonna go to doctor

werner k doyle at st barnabas. hes got some good reviews.

is 1.5 tesla the normal mris? thats half sterength of the other ones mr
Avatar universal
Hi ~ I believe you want to ask for a 3T MRI with dynamic contrast.  The T stands for Tesla and the 3 stand for the strength and dynamic is that it is administered while you are in the machine and they don't pull you out.  I hope all this helps......This is only my understanding of the correct MRI.  I believe a 3T is stronger then a 1.5T.

When you say neuro do you mean neurologist?  I believe you mostly need a endocrinologist or a neuro-endrocrinologist to help in diagnoses. I maybe wrong and if I am I hope rumpled will correct it...  I hope this helps....Take Care
875426 tn?1325528416
I would pursue ASAP with the doctor about your blood test results-  What is your ferritin (iron stores) level?  If you don't know this and haven't had that tested lately, please ask the doctor to get it tested.  My doctor says this is the best test for determining about iron.  

Low iron can cause a host of symptoms, including impaired cognitive ability and concentration difficulties (see PM).  And if you are low in it, they need to find out why you are deficient in iron- for example- are you not getting enough in your diet, are you suffering from blood loss?

I have a very old book, called A Manual of Laboratory Diagnostic Tests, 2nd edition by Frances Fischbach.  About decreased hematocrit, it's "found in

(a) Anemia-A hematocrit of 30 or less means the patient is moderately to severely anemic"

Testdeprived- what is your number and what reference range did the lab give?

It also lists:
"(b) Leukemia
(c) Hyperthyroidism
(d) cirrhosis
(e) Acute, massive blood loss
(f) Hemolytic reaction- This condition may be found in
  (1) Transfusion of incompatible blood
  (2) Reaction to chemicals or drugs
  (3) Reaction to infectious agents
  (4) Reaction to physical agents- severe burn and prosthetic heart valves"

Re: decreased hemoglobin
It says "found in
1. Anemia states (especially iron-deficiency anemia)
2. Hyperthyroidism
3. Cirrhosis of the liver
4. Severe hemorrhage
5. Hemolytic reactions...."
(due to a variety of reasons or accompanying a number of systemic diseases)

Low platelets can be caused by a host of medicines.  Also: "Abnormally decreased numbers of platelets (thrombocytopenia) occur (in)
(a) Idiopathic thrombocytopenic purpura
(b) Pernicious, aplastic, and hemolytic anemias
(c) After massive blood transfusion
(d) Pneumonia
(e) Allergic conditons
(f) Exposure to DDT and other chemicals
(g) During cancer chemotherapy
(h) Infection
(i) Lesions involving the bone marrow
(j) Toxic effects of many drugs."

Testdeprived- what was your platelet count and what was the platelet reference range?
765439 tn?1292960414
ill try to find my blood work. im basically dizzy/lightheaded all the time lately.

so does anyone have any thoughts on the main topic of this post????? does the pit tumor affect cognition levels? thanks

ive been holding back getting the dynamic 3t mri because  i feel its useless, i feel the doctors still wont care.

ive had major gastroentestinal problems for years and have held out on getting a colonoscopy/upper endoscopy to find the problem. i have an appointment with a gastro on the 6th and  iwill insist on getting one. i am hoping  i have an ulcer or something..and maybe thats causing a host of other symptoms.
765439 tn?1292960414
oh i forgot to mention my hands tremble..i hope i dont have parkinsons im only 20 although it is possible that would really suck. doctors suck at diagnosing it they say youre too old id be even though it can occur

ok i found my records guys. they are nott he newest records, but its such a struggle asking for these tests,so ill jsut give the old ones i will post the things  ifeel are relevant and concerning.

ok these first results are from 02/2009 they are the older results but  i had a lot of work done.

out of range-
cholesteral total 202 (125-170)
albumin 5.2 (3.6-5.1)
A/g ratio 2.3 (1.0-2.1)
biliruhin total 1.2 (.2-1.1) dont know if  ispelled this right its hard to see
iron total 182(27-164)
ldl cholesteral calculated 133 (<110)
hemoglobin 17.2(13.2-17.1)
appearance(i think of urine) cloudy (range says clear)
ketones trace (range is negative)


numbers that concern me but ''in range'' stil lfrom 02/2009

testosterone total 277 (241-827)
LH 4.6 (1.5-9.3)
FSH 3.0(1.6-8.0)
PROLACTIN 4.9 (2.0-18.0) neurologist laughed at me cause my prolactin is so low said my tumor isnt symptamatic
TIBC 363 (217-448)
TRANSFERRIN SATURATION 50 (9-52)
TSH 3RD GENERATION 2.72(0.50-4.30)
FERRITIN 63 (10-105)
HEMATOCRIT 49.9 (38.5-50.0) ###### THIS CONCERNS me prettyy much out of range and also my hemoglobin was out of range (see above) idk what these do i think they carry proteins but it concerns me
PLATELET COUNT 167 (140-400) VERY LOW!!!!!!!!!!!!!!!

ok now  that is all that concerned me i will give you results from 4/14/2010

cholesteral total 160 (125-200)
albumin 4.8 (3.6-5.1) ALMOST OUTTA RANGE AGAIN!
A/G ratio 1.8 (1.0-2.1) almst outta range again
IRON TOTAL 77 (45-175) SO IT WENT FROM BEING OVER THE RANGE TO LOW NORMAL
ldl cholesteral calculated 92 (<130)
tsh 3rd gen 3.22 (.40-4.50)
FREE T4 1.0 (0.8-1.8)
TOTAL T3 110(76-181)
HEMOGLOBIN 17.3 (13.2-17.1) OUT OF RANGE AGAIN!!!!
HEMATOCRIT 51.3 (38.5-50.0) OUT OF RANGE!!!!
PLATELET COUNT 136 (140-400) EVEN LOWER THAN LAST TIME!!!!!!!
URINE -CLEAR so thats good
vitamin b12 ... 606 (200-1100)
CORTISOL(AM) 20.7 (4.0-22.0) he didnt wanan do the saliva  iasked for
VITAMIN D,25 OH, TOTAL 19 (20-100)
HE prescribed vitamin d over the counter 2000iu ive been taking 4000 iu and it has done very little. it reduced bone pain slightly but not very much increase i nrelief.



im basically dizzy/lightheaded all the time lately.

so does anyone have any thoughts on the main topic of this post????? does the pit tumor affect cognition levels? thanks

ive been holding back getting the dynamic 3t mri because  i feel its useless, i feel the doctors still wont care.

ive had major gastroentestinal problems for years and have held out on getting a colonoscopy/upper endoscopy to find the problem. i have an appointment with a gastro on the 6th and  iwill insist on getting one. i am hoping  i have an ulcer or something..and maybe thats causing a host of other symptoms.
875426 tn?1325528416
Well, let's start with the positive- your cholesterol has shown wonderful improvement!  You iron, albumin and A/G ration moved to within normal range.  But the doctor should check your ferritin (iron stores) with your dizzy/light-headed symptoms, not just your iron.  My doctor says ferritin is the best test to find out your iron status.  See PM for a lot of info regarding TSH measuring.  Urine is clear, B12 and cortisol in normal range are also great news!

Your vitamin D is low and that concerns me, given how much you say you are taking.  Did you inform the doctor that you've been taking twice what he was recommending or did you start that after he recommended that lower dosage?  Did he not measure your calcium?

Now, before in a post on this thread, you stated "my platelet count,hematocrit,and hemoglobin numbers were low but doctors didnt even tell me", so I posted info based on that.  

At this point, we can determine from looking at your numbers that your platelets in your most recent set of numbers have fallen below normal (please see info on previous posting above on low platelets).  

Also, I can see your hemoglobin is above normal, trending upward slightly rather than being low & your hematocrit was toward the top of normal range and according to your most recent numbers here, it shows the hematocrit increased to being high.  So please, disregard all I posted about low hemoglobin and hematocrit, as your numbers say that's not the issue for you.

My "A Manual of Laboratory Diagnostic Tests" second edition, by Fischbach says an increase in hemoglobin can be caused by living at high altitude (do you?) and certain drugs, including gentamicin and methyldopa.  Transfusions, hemorrhages and burns can cause increase in both hemoglobin and hematocrit.  

It also says
"Increased levels of hemoglobin found in
1. Hemoconcentration of the blood (any condition such as polycythemia and severe burns in which the number of circulating erythrocytes rises above normal)
2. chronic obstructive pulmonary disease
3. congestive heart failure"

Regarding hematocrit, they have a different range than your lab (labs vary)- for men they say varies widely but list normal value as 40-54%.  That set of numbers would actually put you in normal range!  Anyway, increased hematocrit, they say it's "found in
(a) Erythrocytosis
(b) Polycythemia
(c) Severe dehydration
(d) Shock, when the hemoconcentration rises considerably

So, in addition to trying to get diagnosed for your gastrointestinal problems, it looks to me like you might want to ask for a ferritin level, a blood calcium level, possibly bone density testing, and to have a doctor get serious about exploring the possibilities as to why your hemoglobin, which is out of range even according to the normal range for men in my old book, is high.  

And I don't think it's useless getting the 3 Tesla dynamic MRI, if you are wanting to find out if the tumor has grown or not.  Also, a field of vision test once a year I was told to get with my tumor- I think that's standard in their recommending for those with pituitary tumors.  And while I don't know if your tumor is causing cognitive problems directly or not, I know anxiety can rob you of a lot of your thinking powers.  I speak as one who sadly, has not conquered anxiety in my own life and I see a lot of anxiety in your posts.  
Avatar universal
COMMUNITY LEADER
You have high iron - have you ever been tested for hemochromatosis? I would get the genetic testing for it - even though your tests are all over for iron, that may be possible - you are young and it may be early stages.

875426 tn?1325528416
If you look down toward the end of testdeprived's post, at his most recent test he put in from April 14th of this year, his iron is right in range there.
"IRON TOTAL 77 (45-175)"
Avatar universal
Your TSH is something I would consider. I think the new range is .3-3.0 ; that can cause a lot of symptoms....hypothyroidism.
Avatar universal
COMMUNITY LEADER
If you read my post again, it does say that his iron is up and down - aka - "your tests are all over for iron" - I was just presenting it as a possibility. Sheez!
875426 tn?1325528416
Didn't mean to upset you- I'm sorry!  I thought maybe you didn't notice his most recent blood iron was normal when I read your first statement.   I know with my own concentration, I miss things.  I apologize I offended you.  

My own case this year- I was anemic, with my ferritin and hemoglobin low.  My blood iron level, which had dropped by over half since a test late last year, was still in considered in normal range.  

I took iron for weeks, though I missed one day and also didn't take any the day I was to get the test prior to having my blood drawn.  My blood iron level had actually dropped even further than what it had been when I hadn't been taking iron and had anemia.  But my ferritin demonstrated a big rise and was no longer below normal range.   Though the blood iron had dropped even more, it still fell in the normal range.  My doctor says ferritin (iron stores) is the best indicator for iron.  He seemed pleased with my most recent numbers.  

  The ferritin number of testdeprived's was in range back in February, 2009, but I don't understand why his blood iron was above normal (unless he had a big intake of iron just prior to the test or something).  And I feel they really should have run the ferritin test again On April 14th of this year- not just his blood iron level to get a fuller picture of what's going on with his iron.  
Avatar universal
COMMUNITY LEADER
The iron uptake - TIBC - is ok -for him, on the higher end of the range. Have you had that test done?
Hemochromatosis runs in my family with several of my cousins with active disease - it usually only shows up when you are older but one of my younger cousins had it occur when he was young, probably due to poor diet and not taking care of himself. It is genetic, and pretty common, easily treated, and I know my cousin's tests did fluctuate - hence why I said anything.

Of course, it could be something else all together. But in any case, no matter, no hard feelings.
875426 tn?1325528416
Thanks!  

When I was going to get iron testing one of the times, I brought up total iron binding capacity to my doctor (which a former dr. of mine used to order & I know should be on the upper end of the range if your body is really needing the iron badly) but my current dr. said TIBC is rarely done anymore.  My problem is likely due to GI bleeding I've been having.  Still don't understand why the blood iron was even lower than when I started iron supplementation though when my ferritin was up.  But even though he feels ferritin is the best test, I want to get the blood iron re-tested again too.

With testdeprived's transferrin saturation in 2/09 being toward the upper echalons and blood iron being too high, I wonder why the TIBC wasn't on the lower end of the normal range rather than around the middle somewhere.  I'm no hematologist though- just a wondering forum member.  I think doctors should re-test more often than waiting over a year later to check on the iron, if that's what happened to testdeprived via their decision!  A careful doctor should be vigilant with follow up lab testing when something comes back outside normal range.
765439 tn?1292960414
i went to the general doc again today..i gave him another shot, but hes just a wate of money. i wanted to get tested for lymes. he told me ive been tested back in april. i think im just gonna top wasting money ion hom. i think my next step, is to go to this doctor recommended by patients on thyroids.com or some site like that. shes not in my insurance so it will cost 270 for a visit, and  i think like 200 after that, but idc...ill wind up spending that every time on useless doctors. i think my tsh could be my culprit. ive heard this everywhere.


im confused though..totie says  i may be HYPO...all my life ive been struggling to gain weight...like really struggling. ive lifted weights intensely for 7 years. and i never got past 6'2 155 pounds... when i started lifting i was 5'8 110 pounds.

i just recently bulked up to 180 pounds in a the last 2 months8finally started gaining weight quickly but didnt get fat =p) however  i had to drink a pack of ensure plus a day(the stuff they give cancer patients) and had to eat 2k in food in addition to that. that made me sick and im barely eating any more....so wouldn t i be HYPER? ive heard my t4 is low? but  i heard the total t4 is useless...but try explaining that to my doctors.

but seriously i cant stand being always dizzy,confused,lightheaded, and BRAIN DEAD...god im 20..
875426 tn?1325528416
You are right that struggling to gain wait doesn't sound like hypothyroidism.  But then too, I think some are genetically wired that way.  I had the problem when I was younger- struggled to gain weight, made myself sick eating so much, gained three pounds.  Then I got the flu and lost the three pounds!  

I don't believe weight lifting added to your height, but at 20, it could be you might even get taller than 6'2".  If it turns out thryoid is not an issue for you, given enough time, your metabolism naturally slows some and that's one reason why so many older guys get a ponch, because they still eat like they did when they were younger, but their metabolism has slowed down.  

Just my thinking & I'm no expert, but it looks like your free T4 in April was right in the reference range, but on the lower end and with what your TSH was emitting, it seems your pituitary was doing quite a bit of stimulating for your T4 to be in the lower end of normal range.  Definitely an expert would need to evaluate those numbers.  When I look at one website's table, the closest stretch one could get to your numbers (though it's debatable about your TSH being high for your age category) would be mild subclinical hypothyroidism.  See PM.
765439 tn?1292960414
im not getting taller nay time soon,ive been this height since  iwas 16 lol...plus with my declining health i doubt  i have the necessary gh to even grow.... im lucky i grew when i was healthy at elast  igot height going for me.

anyway, it seems my tsh is in the range of someone whos hypo? but if anything im hyper? i cant possibly be hypo... ive read on forums people being one or the other but having symptoms of the other. like bring hypo with hyper symptoms or being hyper with hypo symptoms. all i know is that the only competent thyroid doctor according to the internet in my area charges 270 dollars a visit.....and doesnt take insurance. kind of hard to think shed help me when she seems like shes all about the cash really.
596605 tn?1369946627
Hey
Vitamin D Deficiency can cause congnitive problems and depression and a bunch of other stuff.

You probably need a pharmaceutical grade of it to get your levels up. The over the counter stuff will usually not be strong enough. A decent doctor will know what to prescribe. I have notes about this at home. I am current;y out of town though for a few more weeks. If no one has piped in with the info I will when I get to my real computer.

Also on the 4/14 labs it looks like you may have been dehydrated. In a former life I was a registered dietitian and we used albumin to track dehydration. That may be why some of those labs are high or borderline high.
Horselip
875426 tn?1325528416
While it takes an expert to make sense of your thyroid numbers, from the info I gave you via private message, it looked like your TSH was normal for a certain percentage of people in your age category and you might regret spending the cash.  May I again suggest some things, because I think they are worth looking into?

My "A Manual of Laboratory Diagnostic Tests" second edition, by Fischbach says an increase in hemoglobin can be caused by living at high altitude (do you?) and certain drugs, including gentamicin and methyldopa.  Transfusions, hemorrhages and burns can cause increase in both hemoglobin and hematocrit.  

It also says:
"Increased levels of hemoglobin found in
1. Hemoconcentration of the blood (any condition such as polycythemia and severe burns in which the number of circulating erythrocytes rises above normal)
2. chronic obstructive pulmonary disease
3. congestive heart failure"

So, in addition to trying to get diagnosed for your gastrointestinal problems, it looks to me like you might want to ask for a ferritin level, a blood calcium level, possibly bone density testing, and to have a doctor get serious about exploring the possibilities as to why your hemoglobin, which is out of range- it's even high according to the normal range for men listed in my old book.  
765439 tn?1292960414
the gastro said my hemoglobin levels are high because  ilift weights?

i have a ferritin i listed. i probably will not return to my primary care doctor hes useless. and if what horselipsaid is true..he should have prescribed me higher strength vitamin d. he said take 2000 iu, but i take like 4-6 thou ius.
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