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lets settle this once and for all(pit tumors function o ncognition)
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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
Tags: pit tumor
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875426_tn?1325532016
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.
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765439_tn?1292964014
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?
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596605_tn?1369950227
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
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765439_tn?1292964014
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.
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657231_tn?1390151580
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.
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765439_tn?1292964014
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
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Avatar_f_tn
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
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875426_tn?1325532016
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?
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765439_tn?1292964014
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.
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765439_tn?1292964014
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.
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875426_tn?1325532016
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.  
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657231_tn?1390151580
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.

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875426_tn?1325532016
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)"
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Avatar_f_tn
Your TSH is something I would consider. I think the new range is .3-3.0 ; that can cause a lot of symptoms....hypothyroidism.
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657231_tn?1390151580
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!
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875426_tn?1325532016
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.  
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657231_tn?1390151580
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.
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875426_tn?1325532016
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.
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765439_tn?1292964014
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..
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875426_tn?1325532016
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.
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765439_tn?1292964014
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.
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596605_tn?1369950227
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
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875426_tn?1325532016
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.  
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765439_tn?1292964014
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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875426_tn?1325532016
Were you already taking the higher dose you currently take of 4-6 thousand previous to when he said to take 2000?  If you were EPO doping to improve athletic performance or taking anabolic steroids in relationship to your weight lifting, he'd probably be right.  But if you aren't, I don't see weight lifting on Mayo Clinic's list either.  But there is something on the list that horselip made reference to that they list can cause high hemoglobin- dehydration!  Maybe you want to keep track of how much fluid intake you are doing?  Not being properly hydrated can cause orthostatic hypotension and light headedness.

Regarding your ferritin- you listed a number from early last year, but mentioned a dip in your blood iron level in April of this year.  However, your doctor does not appear to (if you listed all blood tests from that time) to have ordered the better indicator of how the iron is in your body which is ferritin, your iron stores.   And if he/she did not order it, they should to see if it has dropped below normal.  I had iron in normal range (though it took a big drop) and my ferritin  dipped below normal.  Your doctor should check your ferritin with the drop in iron, to rule out iron deficiency as a source of dizziness and it also can make concentration more difficult.

In addition, if they haven't checked your blood sugar level lately, I think they should do that too.  I used to get shaky when my blood sugar got low.  You mentioned shaky hands.  And have they checked your cortisol and catecholamines lately (re: shaky hands) and your anxiety levels?
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Avatar_f_tn
I'm sorry, but I'm really confused. Are you giving information based on personal data because on what you've been through i.e., 2 pit tumors, etc. etc. Why did you have 4 holes in your forehead?? Why did they not completely get the pit tumor the first time?? How do you know so much about all the tech questions, enough to give advice?? Why have you been through this over and over, not to mention your adrenal glands? This seems like a lot of medical problems for one person, did you go through a bunch of bimbos.. what?? ? It doesn't sound like you had the proper attention in the first place for all of these problems to be referenced to, and then to deal with pit problems over and over and cushings and adrenal problems as well?? I'm curious... this sounds like a lot for one person to go through once, but to have ongoing problems appear all the time especially in view of today's medical interventions and  professionals ie., neurosurgeons, neuroendocrinologist, radiologists, medical drs which have all been notified of pituitary tumors and the problems they can cause. I'm not trying to be condensending but I'm sorry, I just don't understand the concept of how one person is still dealing with problems after what you've been through... it doesn't provide much hope for others out there trying to find answers, suffering in the meantime, just to think they will wind up with multiple surgeries, problems and still have the same thing they began with??
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657231_tn?1390151580
LOL... I don't have 4 holes in my forehead - it only seems that way.
I have seen a lot of bimbos - or endummies. I know a fair bit of tech advice as I have done a lot of research. After the docs started to push me off, I started to research a lot of things myself. I had a cyclical case of Cushing's, as well as the prolactinoma.

And yes, unfortunately, all of this, I have gone through. I am permanently disabled as a result. I have had a lot of operations. My case, as may people's was not a straight, simple case, and so many endo's passed me over or just said the issue was thyroid (I did have thyroid problems too) or PCOS (had it too) or one thing or another - no one actually really picked up on the two tumors until the scan found it 12 years after the first scans. I was likely sick long before that first scan.

I am panhypopituitary - I have lost total pituitary function except for ADH. I had my tumor for Cushing's, which was really an ACTH corticotroph hyperplasia, grow back, and so my ACTH is currently upwards of 2800+ (normal is below 48 for most people, for those without adrenals, 350-600 is good).

I am not the norm. I never say I am the norm. Two tumors is not the norm - but it can happen. Recurrences are not the norm - but they can happen. As well, you can have more than one issue - but usually not like as many as me. I think people can do very well and 98% do better than me, but that they need to be informed and to get to a doctor that will treat them appropriately.

But you would be surprised that even today, doctors are still not aware of pituitary tumors and what they can do. It is much better, but still not optimal.

So, yes, I am giving data based on some personal data, and I do pm people in the background with research if I have it. My Cushing's tumor was a splotch. I have a picture of it in my profile. My surgeon did his best to remove all of it - but if even one cell is left behind of a hyperplasia, it will return. That is what happened. My second tumor did not recur. It all depends on the type of tumor - they all have different recurrence rates. And each type of tumor is different.
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Thanks for the info and why you are helping others. I meant what are the 4 holes from??

For you, it sounds like the docs started at the top and worked their way down overlooking everything in their path.

I am sorry that you've had to, and are, suffering in this manner, especially when most of it could have been prevented if doctors had done their job from the get-go.

I wonder why endocrinologists and neuroendocrinologists with hormone knowledge are still so few and far between. It's like pit tumor surgery is at the end of their career.. they don't want to face it, somehow???

Anyway, rumpled.. thanks and I'll keep you in my prayers.

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I still don't understand - did I say somewhere that I had 4 holes in my head? If so, I must have been joking (or was it the staples?)?

I think that most doctors find one thing and stop. For most, that fits, but for some, it does not. I heard over and over that pituitary tumors are rare and that my symptoms could not come from it. I think the fact that it is taught as rare makes the effects more easily overlooked.

What annoyed me a lot was that they would look at the abnormal tests and then normal tests, and say, ok, well you are fine now and I would say, if you still look at me (trying to get them to look at me), can you honestly say everything is gone and that I am fine? They could never look me in the eye, and I was told to come back in 6 months. Or not at all.

I do think people are better off with a neuro-endo, but it takes a bit to get into one, and yet not all of them are so great. I was passed off quite by a few of them.

Thanks for the prayers.
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hey i had a question. i ran out of my vitamin d pills that i had been taken since april. i bought more today. i decided to up the dose. the 5000 unt pills were half price. i decided im gonna take 5000-10000 units a day. today i took one 5000 unit pill and am not sure if  i should take another? the pharmacist said 5000 is very high in itself,although i dont trust many people nowadays


about the high hemoglobin my gastro said he thinks its because i lift weights
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i decided to try 10k units a day see how it goes..seems from researching till do good
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I take 3000iu a day.
50,000iu is a script dose - taken once a week. It is a fat soluble vitamin, so it is stored, not passed like vitamin C, so you can over do. I would not take over 50,000 in a week.
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II Was gonna take 10k a day. i ead that the sun gives you 10k from 30 mins exposure. also ibe read studies that 10k a fay didnt cause harm. 40k was the minimum needed for toxicity in these studies and i assume they used no deficient people??? the vitamin d range is so broad that i think if i took 10k a day with how lo0w i am i should be ok idk..

heres an interesting article

http://www.vitamindcouncil.org/vitaminDToxicity.shtml
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my vitamin d level of 19 was taken before starting any vitamin d supps. i was then advised to take 2000 untits of over the coutner softgels..i took 3000-4000 a day. this was back in april.
i had an appointment on july 9th to retest my levels..and my new level is 30.
ever since then ive bumped the dose up to 10k a day and i will get retested. i would like to maintain a vit d level of 60 as i feel that is prob adequate. the doctors said 30 is still low
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Whoa- you went further than my nickname there- and it's plenty long!  :0)
What did the doctor say on July 9th (if anything) about how much you should take after telling you your vitamin D was still low?  And re: the hemoglobin, if it were me, I'd be getting an opinion of a hematologist to see if the GI doctor was right.  I don't see weight lifting listed as a reason hemoglobin why would go higher than normal range.
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well theres a good doctor in staten island(in mfron jeersey) i posted his link to you if you remember. that barry gordon guy from youtube. hes a testosterone deficiency doctor but he used to practice hematology...i guess  icould go to him...but idk if my hematocrit is a huge issue??? the docs dont seem to concerned?
like  isaid earlier i had a physical in april and my vit d level was 19...doc said take 2000 units a day. then july i got retested and it was 30..and he said to keep up with the 2000 units a day..honestly vit d isnt helping
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Did the doctor say that the amount of increase you had in your blood's vitamin D level in those few months was normal given the dosage?  

Well, you may want to get your H&H (hemoglobin and hematocrit) checked again (and a careful doctor would be wanting to do this re-testing when your hemoglobin at any rate is flagged as high), making sure you are well hydrated and haven't weight-lifted in too close of proximity to the blood test and if they still come back higher than normal range, you may want to seriously consider this info about high hemoglobin and hematocrit:

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"

Your hemoglobin is outside the range even of my old book.
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so i just had my colonoscopy/upper endoscopy...and it was a waste of time...just like my eye doctor visit,field of cision test,and countless other doctor visits.

ive tried to humor the doctors who say this tumor isnt causing my p[roblems...but let's face it...it is the cause of all my problems...and until i find a competent doctor to remove it before it gets bigger preferably!! ill just keep on living a shitt,y life!
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By having these other things done your are ruling out stuff so it's not a waste. It will only help you while you go through this awful stage of getting a diagnosis.
Horselip
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im just not sure what to do next =(
all of the tests  ihave are normal...including hotmones...my prolactin is smack dav in the middle so thats not an issue.
i just dont know what to do next
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What a blessing your colonscopy and endoscopy came back normal!  Your next step is to get that follow up pituitary MRI or did you get it?  
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i never got it. last time  iwent to the neuro which was likw 2 months ago she said  ididnt need it. the only reason id go for another is to get a 3t scan with dynamic contrast,but idk if most places know how to properly do this.

besides,i know  i have the tumor but noone wants to treat me.

im really not sure what my next step is,,,im thinking of going to that doctor gordon i told you about..he will know about my hemoglobin leevels.
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Wasn't your last MRI over a year ago?  If so, why does your doctor think you don't need a f/up MRI to see if the tumor has grown?  If it has been over a year, that doesn't sound kosher to me.  You going to make that appt. with Dr. Gordon tomorrow?
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i have no idea what these freaking doctors are thinking....none of these doctors care about me at all..thats why she didnt thnk. ihavent seen her in a few months. she saw me twice then said she couldnt help me anymore...she said shed write the sscript if i wanted..but idk where to go to get the dynamic 3t scan i want

idk whar gordon  will do to me im beyond repair it seems.

as for the colonoscopy/upper endoscopy
how do i know if he perforated anything? eating/drinking has been feeling weird...and sort of painful like i feel the  food and liquid press against every part of my esophoguys and colon....
also im feeling it in my back as well which is weird....

******* great....i not only wasted my time......but now  im in worse shape...my life is just great

also my intestines ahve been feeling tabby as well i was hoping it would go away but it really hasnt.. i think he perforated something...just great

i always had some stabbyness..but it feels lower like its in the coolon
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do u think based on my labs   i could have hematochromatosis???
i was thinking of asking gordon about testing for that,and maybe an antinuclear antibody panel? but  iheard its expenive really.
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I think you need to get your ferritin retested- according to my doctor, that is the best indicator for what's happening with iron in your body.  

One website says about perforated colon that some symptoms that are common that can occur are being febrile, chills, feeling like throwing up, constipation, diarrhea, and lower abdomen pain and cramps.  You may be feeling things so much because you had an emptied out colon & likely are having a lot of gas now too.  Have you tried taking simethicone and avoiding gassy foods for now?

Didn't you have a place in mind to travel to that had a 3Tesla machine that you were discussing with Rumpled?  Why not get the script for that place?  And regarding Dr. Gordon, nothing ventured, getting no help from him is assured, so why not give him a try?  I think you should look into the hemoglobin elevation further.  I've never heard of an antinuclear antibody panel before.  What's that about?
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surgi,im confused....are you saying you think dr gordon wont help me?? you said it is assured gordon wont help,but then said it wouldnt hurt to go to him????????

gordon would most likely be open to anything,so if you dont mind writing some questions out you think i should ask ill ask him them all!!!!!!!

the main reason i was going to go get the 3 tesla machine mri was to see if maybe my tumor was bigger than they thought..since they used a regular mri w/w/o contrast...or maybe  i had another hiding..like rumpled......but then what???? i havent found a neurosurgeon willing to do an endoscopic removal.

antinuclear antibody panel is  a blood test. im not sure if it might help me? thats why i was inquiring about to you. i am not sure  if  icould post links here,but  if you type into google it should come up!

thanks for the help as always
-dave

PS. do you agree the tumor isnt causing my symptoms. i notice you keep inquiring i  may have some other disease to diagnose. i justdont know anymore myself.
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I said nothing ventured- that means, if you don't try going to him, you definitely won't get any help from him, so why not give him a try?  I'm sorry I confused you.

Wasn't your tumor on the small side?  If so, I would think the 3 Tesla, which is supposed to have more detailed picture taking ability, would be the kind you want.  They should always monitor any kind of brain tumor, including pituitary tumors, to see if they are growing or not.  If it has been over a year, you should get that script for a place with the best MRI machine if possible and where they do it dynamically and right!  If it has grown any, I would think they would want to re-test your pituitary hormones to see if any of them are coming back abnormal, being affected by the tumor.  If all your numbers are coming back normal and your vision is not being affected, I it seems a number of doctors feel the risk of surgery outweighs the benefit of removing the tumor.

Re: ANA testing that looks for autoimmune disorders it looks like- if you give the doctor your list of symptoms and they feel it sounds like you may have this type of problem, then I'd ask for the test.  I'd ask the doctor about my hemoglobin if I were in your shoes.  How I prepare for a doctor visit often includes making notes of what is concerning me and letting the doctor know I'd like to be tested because of these specific symptoms, etc..  I often will have someone go in with me in case I miss something the doctor says.

While I don't know what if any of your symptoms might be caused by the pituitary tumor itself other than how you are feeling about it.  There very well may be some symptoms caused by it.  I'm no doctor.  But at the same time, I do think you should make sure there isn't something else contributing to your symptoms when you have something that's come back abnormal, like your hemoglobin.
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are wide bore mri machines as accurate as regular ones? i know that open mris arent too accurate, so im wonderign if its the same case with wide bore...(wide being less)
princeton hospital has a 3t machine that comes in wide bore...i hate the claustrophobic feeling of the regular mris...but  ii want the most accurate machine possible..should i get it on a regular 3t? or a wide bore?

also they said they had a 1.5t GOLD??? is that better than an 3t??/ they said it was the best????? im sp confused. also it seems many places dont know the difference between dynamic contrast..and an mri with regular contrast. i asked the local mri facility here if they do it with dynamic contrast method, and she said it was just called regular contrast mri...where they press a power button to administer contrast(she got the emthod right)_,,,im worried this wont come out right.

oh im also having mris done for muscle injuries..do u think getting those done on a 1.5 will be fine(i doubt insurance will pay for 2 3t mris...also the 3t mris are a long travel form my house...im willing to go there for the brain..but for the muscle injuries i think the 1.5 will be fine since theres a facility 5 minutes from my house)
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plus the injruys are from my doing also
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I don't know about wide bore- I do know that closed MRI is better than open MRI for the pituitary.  I learned there was such a thing as 3T or T3 through this forum and that 1.5 is not as fine of detail.  I think a regular 3 tesla done dynamically would be adequate.

  Have the muscle injuries been there long term?  I'm surprised the doctor is ordering MRIs for those.  They usually like to be conservative and not order the expensive tests for things like that.  I would think 1.5 would be sufficient for muscle injuries.    But if you have a problem with your knees, they might not be so great.  MRIs at least used to be not very accurate for knee injuries.

If they are continuously taking pictures and use an auto-injector for the dye, rather than pulling you out to give you the dye and putting you back in, that would be dynamic.   Has it been at least a year since your  last pituitary MRI & if so, have you set up an appointment for the 3 tesla MRI of your pituitary yet?
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i haent talked to the dr about ordering mris for my muscle injuries. i see him tomorrow. i have had them for a year. i have had normal xrays,so i will demand mris...also in order for my insurance to pay for me to go see an out of network spin doctor  i need mris of my spine.

i havent made the appointmentt to go to the pituitary mri...i really ant to get the 3t wide bore from princeton,but im scared its not as strong as a regular 3t. i wil lsend you the link to it in your private message
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and yes its been well over a year
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I hope you won't be too disappointed if he says no for muscle MRIs.  Why don't you call Princeton and see if they think that new machine you sent me a link about is one of the best for the pituitary gland?  If they say yes and that's what you want, why not go ahead and schedule your pituitary MRI?  What's wrong with your spine?
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ill be devastated if they say no to the muscle mri....i have injuries that havent healed,and xrays show no tears or anything. insurance reccomended an mri though so i dont think itll be an issue. besides whats the DOCTOR got to lose?

i jsut got a few injuries nothing worth discussing

im so overwhelmed with things  i dont know what to schedule,when.

i worry if  i call princeton and ask them whats good for puituitary theyll ay 1.5 is fine...but  idont want a 1.5..i want a 3.0...from my research its leaps and bounds ahead! i can get a 1.5 right heare,without traveling far to princeton

from the link i gave you do you think its a good one.
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Well, they definitely speak positively about the MRI machine on your link, and I think it's worth calling Princeton about to see if it's right for viewing small pit. tumors.

If you learn it is better than 1.5 for viewing microadenomas of the pituitary and equals  the regular 3 tesla for pictures, you could request your doctor to refer you for an MRI specifying for it to be done on the kind of machine you're wanting.  

Your doctor office could send the order with a request for that specific type of MRI machine and when Princeton calls you to set up the date, you can make sure it is for that machine, otherwise you don't want to make the trip.  As far as what to schedule when, I would think your pituitary tumor and spinal injuries would be priorities and after those, the soft tissue injuries, if the doctor orders muscle MRIs for you.  

X-rays are not good for viewing soft tissue injuries and to my knowledge, can't show muscle tears.  If your doctor ordered x-rays for muscle injuries, without trying to rule out a bone problem, they had you exposed uselessly to radiation.  

I am concerned you have spinal injuries you feel aren't worth mentioning.  If you are being abused or are hurting yourself and that's why you feel they aren't worth mentioning, I urge you to seek help.
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they ae weightlifting injuries from deadlifting. i feel they arent worth mentioning because i know what has to be done for those...i seek your guidance on curing my tumor/headaches problems. i dont know why ud think im abused...

anyway,i got back from the ortho today. my dad and i had to beg him for mris. he agreed to do a full lumer spine)does this include my neck?) he wouldnt do the chest.

im worried that because im getting this mri,the insurance wont pay for the brain one. and they will refuse to pay for the 3t one..especially the wide bores.

i also dont know why ud think i hurt myself....
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ok i called them. the woman said it was as strong as a regular, although it was a mean secretary. she said only the office in jamesburg has the 3t,and the princeton office has 1.5. i mapquested it and its 30 mins away.

i just hope insurance will pay for this. not only am i requesting a brain mri at the same time as my spine mri,but  i am requesting a 3t wide bore mri! and i dont think the neurologist will tell insurance  i need one. she said shed write the script for one, but last time i was there(may 2010..which was 1 year 2 months from my last mri) he said  i didnt need an mri
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Why I was concerned- you said it wasn't worth mentioning and that doesn't sound like what I've seen of you- it has seemed to me you usually don't hesitate to be forthright about your medical issues.  Also- you had posted this about your muscle injuries earlier in the thread:
"by testdeprived , Aug 18, 2010 09:32AM
plus the injruys are from my doing also "

Full lumbar spine is part of your lower spine- five vertabrae make up your lumbar spine.  It does not include your neck, which are your cervical vertabrae.  

That's great that the 3 Tesla is only 30 minutes away, per mapquest!  The neurologist is ignorant if they say you need no follow up imaging for your pituitary tumor and if you had documented proof of that statement, you should report them to the medical board.  Y

ou should be able to get a f/up pituitary MRI from any endocrinologist... possibly even a primary care physician if you bring them info from a medical online source they feel is reputable about how you should get f/up pituitary tumor imaging .  And you will want to bring info on why 3 Tesla is the way you want to go- how it gives superior imaging quality, important when viewing small areas.

If you feel the injuries to your back are purely muscular and not spinal in nature, why not schedule the pituitary MRI first and schedule the lumbar MRI for a later date.  That way you'll be sure and get the pituitary MRI in with your insurance- it should be a slam dunk with your insurance anyway, given your previous record of having a pituitary tumor.

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is it possible that the colonoscopy/upper endoscopy sped up my metabolism. the last few months ive finally been gaining weight(goood thing)..but i lost some weight on my prep obviiously. however after the colonoscopy ive been trying to gain it back using the same weight gain diet as i used before the procedure...and im losing weight now. i was around 180-185 before the procedure..now im 170-173. ill be pissed if it sped me up
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Never heard of a colonoscopy/upper endoscopy speeding metabolism- have you had your thyroid function tested since the big weight drop?
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Be careful on the MRI you requested of your brain. Just becasue you get it done will NOT mean your insurance will pay for it. If your doctor did not order the brain MRI, your insurance will say you will be responsible for that bill. MRI are very expensive...so be careful & find out if your insurance will cover both MRI's....
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i get them pre approved...only concern is that they make me do it at a certain facility...this fqacility only has 1.5s and didnt know what dynamic contrast was.

i got my last mri intraveniously is thate dynamic

how have ur symptoms been tote ;)
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Thanks for asking. I have not had any issues that I know of that could be attributed to my cyst. I really do hope they get you figured out....

My thyroid eye disease is getting a lot better, still dry spots on them, but they are getting less painful.
I do have a dr. appt. next week, but I think it is related to getting old, "arthiritis" of the hands.....swollen index finger joints. I don't wake up with them swollen, but as the day goes they become swollen & red & painful to touch the joint area. I did recover from my shoulder surgery that I had back in Jan., pain gone & healed well.

Other than that, no other issues...Thank God..
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