Blog Entries posted by LilDickens
The first thing I must say is the Radiolgist here! ROCK! I had a CT Scan without contrast, but was prepared for it, and with two swipes they had a satisfactory reading for my doctor. The reason I praise them is because they are the only ones after two other chest x rays ( and another CT scan for adrenals), that came up with the answer why I can't breath and my chest hurt!I am all packed and ready to fly home today. I will review the report later!~ Monday..one week after Camp Cushie- Did I really go?? WOW!@ Night draws, UFCs, salivas...tests. I CAN'T wait to see my results. I feel I was up alot all night, rootng around , feeling on a high. But who knows. I don't do well on salivas. Dr L's staff is so wonderful and supportive. A person is so use to being beat up, it is hard to let your gaurd down and relax. I had a wonderful PA screen me....made me feel comfortable to talk, Of course I froze up whe Doc L came in. I just couldn't think. He said back to square one...testing for Cushings which he believes I have a mild case. I don't have to prove my symptoms, just let's see what the testing says. I do believe he thinks my one test was done wrong from my old Endo. Not a good thing. It was the test that sent me to surgery...not that that was a bad thing...but leaves a "mess" trying to locate more of the tumor or who knows what else! I am a jumbled mess. I need to post my MRI results and CT Scan findings. I will do that soon. I am worn out from a 7 hour flight- 4 1/2 hour- transfer 2 1/2 hour homebound then 1 1/2 hour ride home. Wow, tired! Lost three hours coming home from Seattle. Chest CT Scan: Volume: mildly diminshed; poor inspirationLungs: Mild left basilar atelectasisEverything else ok including the heartCT Abdomen WO Contrast:Unehanced images of the liver, gallbladder, etc are unremarkable. Abdominal aortic cacifications indicate atherosclerosis. Right Adrenal gland in maximal craniocaudad extent measures up to 3.6cm. Maximal AP extent is approx 2.8 cm.Maxima thickness of the medial, lateral limb and body of the adrenal is approx 4-5 cm. No distinct masses are seen,Left adrenal gland in maximal craniocaudad extent approx. 4.8cm. Maximal AP extent is approx 2.4-2.5 cm. there is a mild amount f thickening of the body and medial limb of the left gland without a distinct nodule measuring up to 5mm.Impression:Mild thickening of the left adrenal gland , specifically the body and medial limb without evidence of a distinct nodule or mass. Adrenal glands are in the upper limits of normal size bilaterally. Pituitary MRI: 3 TelsaHigh resolution images show post operative findings. Show the same as the last MRI Post Op.As before, there is a relatively enhancing soft tissue signal involving the bilateral cavernous sinuses, but paticularly the left carticod venous sulcus. This area however is unchanged since the comparison with the 3/2010 examination, on today's examination measures up to 5mm in thickness, and 4.9mm in thickness on 3/2010 exam.The infundibulum remains midline. Mid Sagittal height of the pituitary measures 3.7mm, previously approx 4.4 mm , again presumed to reflect evolution of the fat graft material used.Impression:Continued evolution of postoperative changes in the pituitary fossa, no convincing evidence of a tumor reoccurence or progressio is identified.There remains hypoenhancing material at the inferior aspect of the fossa, although decreased, I connot completely exclude a component of residual tumor, continued follow up is suggested. The high IGF-1 also was considered to send me to surgery...... which proved I had a mild case, since my levels are within normal ranges Post Op.Here are my photos from my trip, including my touring of the big city! http://www.facebook....60&l=922d50ca57~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dx- Cushings / Acromegaly /Jan 28th, 2010
DrJHO- Pituitary Surgery- morn cort - 8.0
Other Dx:Hypothyroidism, Hashimotas, Diabetic Insipidus-DI, Low GH, Pre-Diabetic, Osteopina,Atherosclerosis-aortic calcification, Basiler Atelectasis
6+ midnight saliva's - within normal range
UFC- 57.9, 55............ .......(range > 50)
UFC -.37,37,49, 48, 63 ....( 10-34)
Free Cort/Creat Rat. 46 (9-32) 5.3 (1.6-3.6)
IGF-1-234 (88-249), 342 (87-238)
MRI- no visible tumor
CRH Test- positive pituitary, Glocouse Supression test -Normal !
Adenoma- Stained GH-Positive, ACTH -negative
6/10-Doc say I'm cured
6 months Post Op:
No weight loss
shortness of breath- very prevalent- unpredictable,
drop to my knees sometimes
Post Op Testing:
UFC 24s- .............53, 51 range >50
UFC 17s-.............48, 55 (10-34)
9 months:Going for testing at Camp Cushie- Oct 25th, 2010.
Tested high in ACTH, Cortisol and UFC
midnight cortisols 7.0, 5.6, 5.1, 4.6 ( upper limit 5)
high Acth ........78
high UFC ........74
random serum cortisol 26.3 ( upper limit 28)
1 year Post Op:
Surgery Jan 28th, 2010
Dr L's Home Test Kit #1
UFC........... 74, 72, 48, 31 (0-50)
ACTH - ... .38.2, 31.0, 26.4 , 39.6 ( 7.2-63.3)
Cortisol-....15.7, 11.0, 14.4 , 12.9 (2.3-11.9)
Dr L's Home Test Kit #2
Cortisol....21.5, 17.7, 9.0, 11.9 , 5.8 ( 2.3-19.4)
ACTH ......51.6, 42.9, 39.8, 32.0, 14.2 ( 7.2 - 63.3)
UFC - .......44, 45 ,33 , 31, 48....(0-50)
Salivas- Lost in mail and 1.8, 2.1, 1.8, 1.5
Hemoglobin A1c ........ 6.2 (5.7- 6.4 )
New Dx 1/2011-....Pre Diabetic-told to exercise /lose weight
Blurry vision-right eye tearing-specialist says I am ok- 20/20
Back pain @ 8:20 am followed by flushing, some nausea
Sparatic High BP and Sugar level
Shallow breath- going to Pulmunary Doctor -CT Scan-Basiler Atelectasis
Atherosclerosis-aortic calcification- heart
Heaviest I've ever weighed.
Thank you justashelll!
Date........ Time ......Cortisol ..... ACTH
10/25 ...... 1100 .........6.6 ..........19.5
10/26 ....... 0001 ...........4.6 ..........35.1
10/26 ....... 0400.......... 0.1 ............78.0.
-10/26 .......800.......... 10.7 ........ 33.6
10/26 ....... 0830 ...... 26.3 ...........
10/26 ....... 1200 ........ 4.5 ...........29.8
10/26 ....... 1600 ........ 6.1 .......... 26.2
10/26 ....... 2000 ........ 3.6 ........... 24.3
10/27 ....... 0001........ 5.6............. 34.7
10/27 ...... 0030 ......... 7.0 ........... 18.8
10/27 .......0400........ 15.8 ............ 36.4
10/27 ...... 0800......... 10.3 ..............
UFC 74 and 35
Supressed Dex test
When I started testing at home, it was really a good idea to obtain an online fax # with a fax center to recieve in. I got mine at
First 30 days are free....Cancel at anytime. I might not even use it for longer then that!
Easy, right to my home and read my results without waiting for snail mail!
Good thing to keep handy...thanks!
Daily Chart of Symptoms from Dr Laudlam
Facing Life Objectively:
DxedCushings with Acromegaly Nov 09
Surgery on Pit tumor Jan 28, 2010 Endocscopical ( no packing)
Day 6 :
Feeling lighter, like breathing better
Vaginal area tightened
Tongue decreasing in size
Normal Bowel movements
Can sleep on side where pain use to be
Can get up from a squat
stiffiness going away
Feet stopped being sweaty
Lost 4-5 lbs!
Lack of taste
Still no taste
Sinus infection-Dx Feb15 , antibiotic
Can't smell nor taste
BP up a little
No more weight loss
Some tired days
Lots of Sneezing and a bloody nose on Feb 14
Still tinted pink two days later
DI- on desmopressin acetate
Cortef- 20 mg morn, 10mgs 3 pm since surgery
Still tinting some pink in sinus discharge
Earlobes down- earrings fit better
Normal Bowel movements
I can smell and taste!
I discovered the trail of Acromegaly on my body...I have been Dxed with and Surgery for:
Carparal Tunnel Syndrome- surgery both hands
Dental problems-rebuild bridges
TMJ both sides
Ring size changed 3 times
Grew 1+ Inches in height
1/2 shoe size up
4-5 dress sizes up
Hemmeroids and surgery
Cysts- Ovarian and Gangoloin- Surgery
Hat sized up
3 Ceserean Births- did not dialate
Emergency surgery on foot- MRSA
base 33 H
I have no range to go by.
25.3 base High ( 10-25)
(The measure is 50% increase in ACTH after CRH and 20% increase in cortisol - my comment)
Corticotropin-releasing hormone (CRH), the hypothalamic peptide which stimulates ACTH release from the pituitary gland, has been available for investigational use for nearly a decade. The formulation of greatest clinical utility, ovine CRH, is currently under evaluation by the United States Food and Drug Administration for approval as a new drug. Because approval is anticipated in the near future, it is important to define the clinical indications for this peptide. A key utilization of CRH will be in patients with Cushing's syndrome. Three settings in which oCRH testing has been useful in the evaluation of patients with Cushing's syndrome are: 1) the differential diagnosis of ACTH dependent versus ACTH independent Cushing's syndrome, 2) to enhance the diagnostic accuracy of bilateral inferior petrosal sinus sampling, and 3) distinguishing between Cushing's syndrome and pseudo-Cushing's syndrome.
To perform a CRH test, blood is drawn for baseline ACTH and cortisol levels at -15 and 0 minutes followed by a 1 mg/kg dose of oCRH administered as an IV bolus. Samples for ACTH and cortisol are then drawn at 15, 30, 60, 90 and 120 minutes. The test is well tolerated, with the most common side effects being transient facial flushing occurring in 20% of subjects, and rare dyspnea and hypotension. Normal subjects experience a rapid rise in ACTH and cortisol, with a gradual decline over the subsequent two hours.
CRH Testing - Differential Diagnosis of Cushing's Syndrome
The first use of oCRH is in the differential diagnosis of Cushing's syndrome to establish the site of hormone excess in patients with documented cortisol excess (Fig. 1). The use of CRH in this setting is based on the principle that pituitary tumors are responsive to exogenous CRH, whereas ectopic and adrenal tumors are not. In Cushing's disease, at least a 50% rise in ACTH and a 20% rise in cortisol compared to baseline have been described as criteria providing a 91% sensitivity and 95% specificity for pituitary Cushing's. It has also been shown that using both the CRH test and the high dose dexamethasone suppression test enhances diagnostic accuracy. In adrenal Cushing's, the low ACTH and high cortisol levels at baseline are not affected by CRH injection. In ectopic Cushing's, typically due to carcinoid or oat cell tumors of the lung but reported for a wide variety of tumor types, the high ACTH and high cortisol levels at baseline are usually not altered by the CRH administration. However, a few cases of ectopic Cushing's in which some response was seen to CRH have been reported. Interestingly, in nearly all of those cases, ACTH rises without a concomitant increase in cortisol, suggesting that the cortisol response to CRH may be the most specific biochemical test differentiating between pituitary and ectopic Cushing's syndrome. It has been theorized that this discrepancy between ACTH and cortisol release may be due to the secretion of "big ACTH" by ectopic tumors, with these abnormal forms of ACTH being less bioactive, resulting in a smaller adrenal response to a given amount of ACTH.
Reprinted by permission of the New England Journal of Medicine Vol. 310, page 622, 1984
CRH Testing - Bilateral Inferior Petrosal Sinus Sampling
The second use of CRH is to enhance the diagnostic accuracy of bilateral inferior petrosal sinus sampling (BIPSS) for ACTH. BIPSS is performed via femoral catheterization to sample blood from the inferior petrosal sinuses draining from the pituitary. This provides for comparison between central and peripheral ACTH values, allowing definitive confirmation of the site of hormone excess. It is also possible, by comparing right versus left side ACTH values to predict the tumor location and provide this information to the pituitary neurosurgeon. (See Vol. 1 of newsletter). The rationale for using CRH during BIPSS is that false negative test results may occur in up to 18% of patients subsequently proven to have pituitary Cushing's. This is due to the fact that secretion of ACTH from corticotroph adenomas can be episodic, and a low value may be measured from the petrosal sinuses if the blood is collected between ACTH pulses. Use of CRH stimulates ACTH release from the corticotroph adenoma, producing a higher pituitary-to- peripheral ratio, and thereby allowing better discrimination between pituitary and ectopic Cushing's. If the pituitary to peripheral ratio is >3 with CRH, the patient has Cushing's disease. In contrast, if it is <3, the patient has ectopic Cushing's. The sensitivity and specificity of BIPSS each reach 100% if CRH is used. Approximately 100 BIPSS's have been performed at the Massachusetts General Hospital with results very similar to those reported by the NIH and with no neurologic complications. An example of data from a BIPSS with CRH performed at the Massachusetts General Hospital is shown in Table 1.
CRH Test - Cushing Syndrome versus Pseudo-Cushing's
The most recently described use of CRH in the evaluation of patients with Cushing's has been a new test designed to distinguish Cushing's syndrome from pseudo-Cushing's states. Differentiating between hypercortisolemia associated with endogenous depression (pseudo-Cushing's) versus depression associated with true Cushing's syndrome can be extremely difficult. Insulin tolerance tests, in which patients with primary depression have a normal cortisol response and patients with Cushing's syndrome have a blunted response, and CRH tests, in which patients with primary depression have a blunted response and patients with Cushing's syndrome have a normal to exaggerated response, have been advocated to make the distinction between these diagnoses. However, the data show substantial overlap between groups. Therefore, although these tests have been useful in studying the physiology of these disorders, they have not been as useful diagnostically as initially hoped. It has often been necessary to follow patients with depression versus Cushing's for many years with improvement in primary endogenous depression (either spontaneously or with pharmacotherapy) indicating absence of Cushing's syndrome. A recent study has suggested that it is possible to distinguish patients with pseudo-Cushing's from those with Cushing's syndrome by performing a CRH test immediately following a standard low dose dexamethasone suppression test. The last dose of the eight 0.5 dexamethasone pills is given at 6 a.m., followed by an 8 a.m. injection of CRH. A plasma cortisol greater than 1.4 mg/dl measured 15 minutes after the CRH injection differentiated all patients with Cushing's syndrome from those with pseudo-Cushing's. The values for plasma cortisol in the 39 patients with Cushing's syndrome and the 19 patients with pseudo-Cushing's who had elevated urine free cortisol are shown in the Figure 2. This test had 100 % specificity, sensitivity and diagnostic accuracy and is extremely promising for the diagnosis of Cushing's syndrome in this difficultsituation.
In summary, the CRH test is a safe, well-tolerated diagnostic tool which will have a beneficial impact on our ability to diagnose accurately patients with Cushing's syndrome.
JAMA, 1993; 269: 2232-2238 with permission
Yanovski JA, et al. Corticotropin-releasing hormone stimulation following low-dose dexamethasone administration. JAMA. 1993; 269: 2232.
Chrousos GP, et al. The corticotropin-releasing factor stimulation test: An aid in the evaluation of patients with Cushing's syndrome. N Engl J Med. 1984; 310:622.
Oldfield EH, et al. Petrosal sinus sampling with and without corticotropin-releasing hormone for the differential diagnosis of Cushing's syndrome. N Engl J Med. 1991; 325:897.
Nieman LK, et al. The ovine corticotropin-releasing hormone stimulation test and the dexamethasone suppression test in the differential diagnosis of Cushing's syndrome. Ann Int Med. 1986; 105:862.
Number Right Left Peripheral Peripheral/Pit Side/Side
Baseline 1 18 34 16 2.1 1.9
Baseline 2 19 32 15 2.1 1.7
CRH 2-3 min. 18 31 15 2.1 1.7
CRH 5 min. 37 475 22 21.6 12.8
CRH 10 min. 68 308 41 7.5 4.5
CRH 10 min. 67 194 62 3.1 2.9
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In case you didnt see my bio on the main Cushings page I decided to place it here:
I was diagnosed in 1995 with hypothyroidism, after the birth of my son vie C section. This was my third Cesarean section. I knew I was gaining too much weight during pregnancy but no one would listen to me. I've had hypo for fourteen years now, with ongoing difficulties and no weight loss.
I became suspicious when I couldn't get my thyroid disease under control and started moon facing. In 2003 my daughter noticed my buffalo hump. I tried to point it out to the doctor but to no avail. Said it was fat. I was tired, depressed and sick.
I have to note that when I was a child I cracked my skull open. My sister said I had clamps on my head. I cannot find anything else about it. I had severe headaches, poor appetite, skinny and fearful. Many emotional problems. I came home from school many times to have ice packs on my head for the headaches. I started to drink alcohol at about 13 yrs old, becoming an alcoholic until age 33. 20 years of drinking! I am now sober 18 yrs.
I am pursuing a diagnose for Cushing disease based on my symptoms and the huge hump on my neck. I've been really complaining for the last two years.
My newest PCP was the one who gave me a copy of a printout on Cushings. She is sending me to an Endo but who knows. 3 1/2 month wait to see Endo. Now, wouldn't you know it, my hubby's job looks like its going to be terminated in March, so my insurance will only be in for two months after that! I'll be without insurance!
I'm now in the process of testing after going through 2 more Endos and meeting a great Endo in Maysville, KY> Dr Holmes. "Wonderful, Good doctor "as we'd say in PA! I had went to one Endo here in PA and had two UFC24 test done and I showed high, but he just asked if I was stressed and sent me to Hershey. I heard Hershey Medical wasn't very good for Cushies so I moved on to KY. I'm so glad I took the time and the money to go there. I will never regret that. It saved my life!
I feel so fortunate. Dr Holmes ordered more testing which I am doing now, and he looked over a Pituitary MRI which I obtained from the other Endo. Dr Holmes disagrees with the radiologist that my MRI was normal. BTW, my husband got another job that uses the same Union Insurance!
I also have high GFI-1. He said I might have an Acromegaly.
I am now diagnosed with Cushings and Acromegally. At this present time I have chosen my surgeon and am waiting for his approval for surgery and set a date to meet with him.
All of this testing and paperwork is time consuming and a lot of patients is needed. I am diagnosed during the holidays and this is really a slow process with many delays.
My symptoms are many, including that horrid buffalo hump. I feel really sick sometimes, and bloated like I am going to exploded. I have extreme fatigue. I also feel during my lows like I am just going to die, with waves of dizziness and a huge general weakness that I can hardly turn over in my bed. I thank God that I do not hurt. I am just stiff in the knees and I can't get up very well from a squat or from sitting too long. My emotional state is awful, from rages to deep depression.
I suffer/suffered from TMJ ,Depression, Mood Swings, Carpal Tunnel Syndrome (2)with surgery, Weight gain, Headaches and Vertigo- dizziness, hypo adolsterone,teary right eye, Teeth gapping, Cavities, infected Root Canals, Hypothyroidism, Hashimoto's Disease, Tonsillectomy, Costochondritis, Heart Murmur, Tortuous Aorta- a twisted heart valve, shortness of breath, Tennis Elbow, Irritable Bowel Syndrome, Dysentery, Impotency, lost periods, Osteopenia, Ovarian Cysts, 3 C sections, Joint stiffness, chronic rectal itching, Hemorrhoids, Heel Spurs, Ganglion foot cyst, MRSA.
I am very afraid of the Acromegally. I have changed sizes. I was a petite 10, I am now a size 22. I do believe I have gained height by 1?1 ? inches. My wedding rings size has changed twice and now I can no longer wear them. I suffer chest pains from Costochondritis- inflammation of the rib bone area. As the days go by without treatment, I swear I can feel the damage that is being done to my organs. I suffered terrible dental problems with major infections and I also had an awful infection in my foot from a minor injection for a cyst. I ended up with surgery to clean out MRSA and had two areas of incision! I also show a twisted Aorta valve, which I feel is from Acromegally.
I succeeded in obtaining my diagnose of Cushings Disease with Acromegally from Doctor Holmes through UFC tests (Urine) and blood work for IGF-1, CRH testing, and Glucose Suppression Tests. Salvia testing didn't work for me. I feel I have problems with my saliva in general, perhaps a malady not yet diagnosed, but nevertheless is present. I was tested once with saliva that proved I had a very low acidic value, and the comment from the lab was " could be due to cortisol excess!" 5 years before I was diagnosed with Cushings! I am now waiting to meet my surgeon , DrJho and set up a surgery date.
This site is invaluable to anyone suffering. The amount of information can be overwhelming because it is so plentiful. The forum is wonderful. Up to date information, wonderful people who give help , information; support and Hope!
Results 6 weeks Post Op ITT Test at Allegheny General
Wow, I was really low in somethings (noted in Blue)!
Folic Acid 16.4 ----------------------3.5-16.1
Parathyroid hormone Intact 68.8 ------- 11-68
Parathyroid calcium 9.1--------------- 8.4-10.3
Sex Hormone Binding Globulin 15.9 --- 20-100
T Uptake 1.18 --------------------- 0.66-1.27
Testostrone,S 8 -------------------------- 6-82
Testostrone, free 0.3 ------------------- 0.0-2.22
Total T3 76 ---------------------------104-260
Total T4 2.6 ------------------------- 4.5-12.0
B12 558 ------------------------------- 200-900
ITT Test Cortisol Serum- Timed 8am ^........10.5, 13.3, 18.3, 20.4, 23.1, 21.7 ------ 7-25 range
ITT Test- GH Timed- 8am^---------------------.0.09, 1.47 , 5.59, 8.47, 3.86, 1.02 --- >10
ITT Test- Glucose Timed- 8am ^--------------- 89, 25, 34, 50, 74, 84---------- 70-99 range
Ask your endos office if he/she has a standard letter that you can present if you need to go to the ER or call an ambulance. I have one from my endo though it is designed for how to recognize and treat me for an AI event.
Your endo should be willing to call in some RX's for you while you wait for surgery, whether they are hydro/cortef or something for anxiety like xanax which will reduce your cortisol levels. Have you talked with your doc about this?
If nothing else, you should have a plan from the end for your after care BEFORE you go to surgery. You will need:
- Letter from endo on symptoms of AI and how he wants you treated if you end up in the ER
- Medic bracelet with your name and that you are steroid dependant - admin 100mg cortisol
- Filled Rx for hydro or cortef
- Filled Rx for 2 bottles of solu-cortef (act-o-vial) and 2 syringes
.....critical that it's the (act-o-vial) formulation because it is designed to have the liquid that reconstitutes the powdered cortisol at the top of the vial and it drops down to make the medicine. The other formulations require you to withdraw liquid from one vial and transfer it to another.....that's too dangerous to ask someone who's in an AI event to physically coordinate that.
I know it's so hard to wait when you're so close to surgery, but hang in there, come chat with us when ever you need us....the lights always on here.
Borrowed from another poster...Article from Dr F on Iron
"My endo, Dr F., puts his patients on an OTC product called, Iron Sorb. I have zero GI symptoms.!!!!
Initially my ferritin was at 10 and is now reliably at 70-80. That's the level you want to keep it at.
Here's the white paper he's written for his patients and docs to read. It will give you specific instructions on how many iron sorb pills to take a day depending on your current ferritin level. Also a link to the product and how frequently you should retest your level. It makes a huge difference when it gets to the right range!!!"
Whoa, good article
Given the chronic nature and associated significant increased morbidity and mortality of acromegaly, treatment is required for almost all patients. Three modalities of treatment are available: surgery, pituitary irradiation and medical therapy. All of these have advantages and disadvantages and more than one modality is frequently needed, often all three. The decision as to whether to treat and the modality employed must be based on a number of factors, including patient age and general health, wish for fertility, severity of disease and any associated complications, and the risk/benefit ratio of the proposed treatment modality. The goals of treatment are summarised in Table 4.
Table 4. Acromegaly- aims of treatment
Removal of the pituitary tumour and resolution of mass effects
Relief of the symptoms and signs of acromegaly
Restoration of normal rates of secretion of growth hormone and IGF-I
Maintenance of normal anterior pituitary function
Prevention of recurrence
Assessment and treatment of chronic complications
Whilst the general principles of these aims are accepted by all endocrinologists, there remains considerable controversy as to the degree of growth hormone reduction that should be the target and what level should be regarded as normal. The use of sensitive growth hormone assays has demonstrated that abnormal patterns of growth hormone secretion can remain despite reduction in mean circulating concentrations to extremely low levels, and thus complete restoration to normality is often not achieved. Early epidemiological reviews, particularly those documenting the results of surgery, tended to regard a mean level of less than 5 ng/ml as being satisfactory. It has become clear in recent years that the excess mortality associated with acromegaly can be significantly reduced and indeed restored to that of the normal population by aggressive treatment and reduction of serum growth hormone concentrations to a mean level of less than 2 ng/ml and/or a serum IGF-I within the aged-matched reference range. Thus, rather than using the word cure, it is may be more appropriate to consider an average growth hormone concentration of ? 2 ng/ml as representing a "safe" level. An alternative target suggested at a consensus conference is a nadir level of less than 0.4 ng/ml after a standard 75g glucose tolerance test 42 (Figure 2).
Surgery for Acromegaly Transsphenoidal surgery is the initial treatment of choice for most patients. Originally performed by Harvey Cushing in 1910, the lack of adequate visualisation prevented its reintroduction for routine use until the mid-1970's. With modern equipment and in experienced hands, it is a safe procedure with a low complication rate and mortality of less than 0.5%. The most commonly used approach is with the patient in a semi-reclining position via a mid-line nasal route. Using a sub-labial or direct nasal approach, the mucosa is cleaved off the nasal septum providing access to the sphenoid sinus and subsequent removal of the fossa floor. A less satisfactory alternative approach is via the ethmoidal sinus. Pituitary adenomas are usually soft and easily removed with curettes although firmer and larger tumours may require piecemeal removal. Using this technique, even tumours with a significant suprasellar extension can be removed via the transsphenoidal route, although massive tumours may require a craniotomy. Such transcranial surgery is however associated with increased morbidity and mortality. More recent surgical techniques include the use of intra-operative MRI43 and intra-operative growth hormone measurement44. The development of endoscopic transsphenoidal surgery has been reported to offer several advantages over the conventional technique, although is used by only a few surgeons. These include superior tumour clearance, especially suprasellar extension, less surgical morbidity, fewer complications, and reduced post-operative discomfort 45.
The success rate of transsphenoidal surgery depends on several factors: (i) the size of the tumour, (ii) pre-operative growth hormone values and (iii) the skill and experience of the surgeon46;47. Although different series have often used different criteria to determine success rates, in experienced hands post-operative mean growth hormone levels of less than 2 ng/ml should be achieved in 70%-90% of microadenomas and 30%-50% of macroadenomas48,49. Pre-treatment of patients with somatostatin analogues before transsphenoidal surgery results in significant shrinkage (approximately 50%) of the adenoma and may improve the subsequent surgical cure rates50;51. Complications of transsphenoidal surgery include diabetes insipidus; this is usually transient but may be permanent in approximately 5% of cases depending on the criteria for its diagnosis. A serum osmolality of greater than 295 mosmols/l with a simultaneous urine osmolality of less than 150 mosm/l is confirmatory. It responds well to desmopressin (DDAVP, subcutaneous, oral or intranasal). Other complications include CSF rhinorrhoea and subsequent risk of meningitis, although this can be minimised by the use of prophylactic antibiotics. The syndrome of inappropriate ADH (SIADH) may occur around one week post-operatively and needs to be considered in the context of decreased urine output ? such a clinical scenario must be distinguished from hypovolaemia due to insufficient fluids; increasing intravenous fluids for the latter erroneous diagnosis will obviously dramatically worsen SIADH which almost always spontaneously resolves after a short period of fluid restriction.
The major long-term complication associated with transsphenoidal surgery is worsening of anterior pituitary function and hypopituitarism. In a series of 100 patients with acromegaly operated on at St Bartholomew's Hospital, UK, new hypopituitarism occurred in 21% of patients following surgery, but with 35% having hypopituitarism pre-operatively52.
MaryO posted this the other day. Very interesting and may be helpful for you to bring to the doc.
4 Ways to Diagnose Cushing's Syndrome
1. Common Signs
A physical exam is often the first step in a diagnosis of Cushing's syndrome. Several physical signs indicate the syndrome. Your doctor will look for a hump in your back between the shoulders. People with Cushing's syndrome often have a rounded face, and they may have excess facial hair. The face may also be flushed or have purple marks across it similar to stretch marks. A blood pressure reading will also be taken. High blood pressure is often a symptom of the syndrome, as well as depression and anxiety. Help your doctor in making an accurate diagnosis by providing a thorough medical history.
2. The 24-Hour Test
In people with Cushing's syndrome, the adrenal gland produces too much of the hormone cortisol. Doctors can monitor your levels of cortisol in both blood and urine. You may be instructed to collect urine for a 24-hour period and to submit blood samples to check for increased hormone levels. Your doctor will also look at your blood-sugar levels since Cushing's syndrome can also cause diabetes. Your doctor will have you do the urine test many times, then prescribe a medication to alter the cortisol levels in your body. You will repeat the urine test to determine if the medication has changed the hormone levels accordingly.
3. It's in the Saliva
A saliva test is another option to help diagnose Cushing's syndrome. You will most likely be asked to collect a sample late in the evening before bed. Normally, cortisol levels are highest in the morning and fall throughout the day. In people with Cushing's syndrome, the hormone levels are high all the time. By collecting a sample late in the evening, your doctor can see if levels are still high.
4. CT Scans Aid in Diagnosis
Because the problem may be with the adrenal gland, a CT scan or an MRI can help determine a correct diagnosis. The scan can give your health-care provider a look at your internal organs. A CT scan can detect tumors that may be affecting the adrenal gland and causing the increase in cortisol production. Several symptoms of Cushing's syndrome can be similar to other
Wow, can't believe how impatient I feel...It's so very hard when I am waiting on Dr Mc to reply back to Dr Holmes about my recent MRI. It just seems like I am getting sicker everyday. I am getting depressed! My hands are so full of troubles right now, mom living with us with Alz, my hubby broke his thumb and home for 6 weeks now, and so on. Cushings Help gives me so much hope and helps me to stay on track.
"When people with Cushing's syndrome or Cushing's disease have complex dental procedures, they may be at higher risk of infection. They also may be at risk of cardiovascular collapse, in which the heart stops pumping blood.
If you have Cushing's syndrome, it is critical that you tell your dentist or oral surgeon about it before you have any procedures. They also need to know if you are taking a steroid medicine. Your dentist or oral surgeon probably will monitor your blood pressure during the procedure. You also may need to take more steroids than usual before certain dental procedures. The need for extra steroids depends on a variety of factors. This often is coordinated with the primary physician.
People who take glucocorticoid supplements for a long time are more likely to develop fungal infections in the mouth. This occurs because the drug suppresses the immune system. They may have high blood pressure and have difficulty managing blood sugar levels. Your dentist may want to check for these problems before treatment.
People with Cushing's syndrome may bruise easily and may bleed more than normal during dental procedures. Wound healing can be delayed by multiple factors. These may include suppression of the immune system and poor clotting of the blood. "
Thank you SAL
DrJHO's site has a good write up on Tumors
I am keeping this as a reminder of Acromegaly- a functioning tumor
"Benign pituitary adenomas can be divided into nonfunctioning tumors and functioning tumors depending on the capability of tumor cells to produce hormones. Nonfunctioning pituitary adenomas do not produce active hormones by themselves. Nonfunctioning tumors mechanically compress surrounding structures such as normal pituitary gland and optic system. Functioning pituitary adenomas produce a hormone(s) in excess. Excess amount of hormone produced by tumor cells cause symptoms dependent on the type of hormone. Functioning pituitary adenomas include prolactinomas (PRL overproduction), adenomas that cause Cushing's disease (ACTH overproduction), adenomas that cause gigantism or acromegaly (GH overproduction), and TSH-producing tumors."
Symptoms due to excess growth hormone or IGF-I vary widely. Increase in ring size or tightness of rings (due to hand swelling, "sausage-like" fingers) Increase in shoe size (due to foot swelling) Increased sweating Coarsening or thickening of facial features, especially the nose Increased prominence of jaw and/or forehead Thickened skin, especially on palms of hands or soles of feet Oily skin or acne Swelling of tongue Thickening or swelling of the neck (due to goiter) Arthritis (pain, swelling, or stiffness in any joint) Difficulty breathing during sleep (sleep apnea), causing poor sleep and excessive sleepiness during the day Pain, numbness, tingling, or weakness in hands and wrists (carpal tunnel syndrome) New overbite, underbite, or spreading out of teeth Large numbers of skin tags Acromegaly that affects the heart or blood pressure or causes diabetes may have another set of symptoms. These do not occur in everyone with acromegaly. Irritability Fatigue Fainting Weakness Increased thirst or urination Shortness of breath Chest pain Palpitations or rapid heart beat Poor exercise tolerance
Pittsburgh bound travelers
My family is staying at Allegheny Center in Pittsburgh, PA ( thanks to Gracia)
They rent studio apts by the day, three day minimium. I paid $75 for a completely furnished with King size bed. Linens, pots, pans, everything!
You can also rent Bigger apts for $85 and up. No taxes, they are not a hotel.
Parking is $3.50 a night; everything is secured. They shuttle twice an hour to/from Allegheny Hospital (dont know for how long a day,till about 9 pm)
They are two blocks from the hospital!
Yes, I am sitting up in my room at 4 oclock in the morning hungery ( so I ordered a snack!) I got a real big delicious turkey sandwich and a side of applesauce. I am in heaven!
Surgery went really well. I had a long wait in the pre-op, from 7:30 am until my actual surgery at noon. I then had difficulties after surgery; they forgot to give me anti-nausea medication, and I was sick and flinging around ( I dont remember) and cut my hand. I wonder if this could have been a cortisol crash? I went to surgery at noon and didnt get to my room until 5 pm. Crash post op?
I had to stay in post op longer because they then couldnt get me awake from the meds. I missed seeing the doctor, so I don't have a lot to report. He got the tumor out and now we wait on labs to see if it was a successful surgery! The procedure went well and I am feeling pretty good! I do feel the "Cushings Pressure " is off me, and I do hope and pray it will be permantly gone. Immediately I see the hard tummy bloating is down and my face is softer. I had a tremendous hump ache when I got up here, it was awful. My hump on my neck hurt like a sore tooth, and that is what I recieved pain meds for, not for a headache ( as supposed for the surgery area). I had a very very mild headache at the front of my skull, but soon went away.
I do have DI for now, they put me on a medicine and it stopped immediately ( I will ask for the other testing for this , Thanks) My sodium level was ok coming out of post op, but I didnt hear how the last blood draw faired. The nurse just came in for a draw to check sodium and all here at 4 am.
I also have a nasal drip but not a problem at all. It is expected. Bringing Puffs (as suggested) was a great idea. Internet is good here. Wont let me on facebook, and just signs out a few times on its own but I log right back in!
DrJho is well thought of here..everyone says he is picky, the whole nursing staff on this floor knows his routine to a T. He prepares his patients well in advance and uses two Operating rooms to work with, maintaining a production line of sorts. One is operated on , one is in the next room ready to go. He keeps all his people on thier toes. They really like him. I think I have the best Surgeon for this in the USA!
Thank you for all your prayers! God is so good, He takes care of His own!
With heartfelt gratitude for all of you,
Pathological Report :
A.) Pituitary Adenoma
B.) Pituitary Tissue
Stained for the following :
A.) A Pituitary Mass consisting of 4 fragments sizing from 0.1 to 0.2 cm. Soft tan pink friable tissue
B.) A Pituitary Mass consists of seven portions of tan red tissue , varying from 0.2 to 0.7cm in the greatest dimensions
""My Cushings and paraneoplastic wastings syndrome were caused by a cancerous tumor in my left lung. Of course every doc I saw said that it was from poor diet and lack of excercise even after i told them I have the perfect diet and fitness plan and can gain 3 to 6lbs in one day. Docs did not believe almost everything I was explaining but I kept going to more docs and explaining everything all over again. When I finaly convinced a doc i had cushings several scans of my head were being done. brain surgery was cancelled 2x i was given aprox 2 months to live. then in the nic of time based on their research my sisters convinced the doctors to stop arguing over my brain and look in the lung using an octreotide scan. BAM tumor lit up like a light bulb. Had my lung removed. Deadly Ectopic Cushings runs in my family. I had MANY MANY numerous secondary illnesses ALL were caused by my Cushing's. I think I may be cured I'm praying. Almost all of my horrible conditions disapeared w/my cortisol. I dont want to say it out loud because i dont want to jinx it but i do want to help others and would like to discuss this further w/anyone who is interested. Good luck to all of you. If it was not for my sister finding help here I would not be here. When i have cushing's type symptoms they r calling it carcinoid syndrome. it may last forever because that is the name of the tumor i had (carcinoid) which kinda was a blessing because it is less aggressive than small or oat cell wich is more common and much more aggressive. They did not know until they opened me up that my cancer had spread throughout the entire upper left lobe and the lymph nodes closest to the primary tumor. just trying to put info out there for others who may be doing their own research..."
I would post the posting but I dont know how to do it!
THANK YOU SO MUCH!
Thanks to one of our devoted members, we have this info at our hands!:
Managing Adrenaline Insufficiency