Discussions that mention nasonex

General Health board


Continued From Above/Below/Original Post in this thread

March 2006
I go and see a different endocrinologist. More blood work ensues. A test for ASCA IgG comes back negative. A test for ASCA IgA comes back negative. I test negative for Inflammatory Bowel Disease (ANCA-IBD). TNP-Screening test is negative. Tests of total testosterone and TSI come back normal. My % of free testosterone comes back low at 0.88% in a range of 1.1 - 2.8. The Celiac Disease Panel comes back negative. I am again tested for Gliadin Ab IgA, which comes back normal. The test for IgA serum comes back low at 67 in a range of 81-463. The Tissue Transglutaminase test comes back negative. The Lactoferrin Stool test comes back normal. My TSH comes back suppressed at 0.31 out of a range of .70 - 6.40. My Free T4 is in normal range. The prolactin test comes back normal. Tests for Luteinizing Hormone, FSH, Anti-Thyroglobulin AB, Anti-TPO Antibody, and Calcitonin Serum all come back normal.

April 2006
I see a different internist and get more blood work done. My T3 Uptake comes back at 34.7 in a range of 25-35. My TSH comes back low again at 0.57 in a range of .70 - 6.40. I am again tested for Westergren Sed Rate, Anti-Thyroglobulin AB, Anti-TPO Antibody and Free T4. All of those tests come back within normal range. I do a 24-hour urine drop to get my porphyrins tested. The tests for uroporphyrin, coproporphyrin, and total porphyrins came back in normal range. The tests for heptacarboxyporphyrin, hexacarboxyporphyrin, and pentacarboxyporphyrin came back with results “below reportable range for this analyte.” The urine is also tested for Delta ALA and Creatinine, both of which come back normal. I get tested for PNH with Red Cell CD55 and Red Cell CD59, both of which come back normal. Tests of ALA Dehydratase and PBG-D come back normal.

May 2006
I see a different gastroenterologist and have an endoscopy performed to rule out malabsorption/figure out why my weight loss continues. The esophagus, stomach, and small bowel were all examined and no abnormalities were seen. Here are the findings of the biopsy: “The superficial epithelium is intact. Villi are normally formed without evidence of blunting or fusion. The lamina propria demonstrates normal numbers of mononuclear cells. No acute inflammation or granulomata are identified. Crypts are intact with normal Paneth and goblet cells. No cellular atypia is identified.”

The blood work comes back almost entirely normal. The Total Protein is high at 8.2 out of a range of 6.0 - 8.0. My Cholesterol is low at 139 out of 140-200. My white blood cell count is within normal range, but on the low side. My prothrombin time is within normal range. The test for PTT comes back normal.

I see another endocrinologist, and he orders more blood work. The test for Gastric Parietal Cell AB comes back negative. My Free T3 is normal at 391 in a range of 230-***. My TSH is suppressed again at 0.35 out of a range of 0.70 - 6.40. My Free T4 is 1.4 in a range of 0.8 - 1.8. Luteinizing Hormone comes back at 1.7 in a range of 1.5 - 9.3. My Total Serum Estrogen comes back out of range at 149 out of a range of 130 or less. A test of IGF-1 (Somatomedin-C) comes back normal. I test negative for both Antiphosphatidylserine IgG and IgM. I do another 24 hour urine drop and it gets tested for histamine, which comes back normal. My Tryptase comes back at 2 out of a range of 2-10. My Total Testosterone is in normal range but my percent of Free Testosterone still comes back low at 1.06 out of a range of 1.1 - 2.8. Vitamin B-6, Plasma comes back in normal range. FSH, Vitamin B12, ACTH, and Cortisol all come back normal, though cortisol is again on the higher side. Vitamin A is out of range at 37 in a range of 38-98. Vitamin B1, Plasma comes back normal, as does Zinc, plasma. Serotonin, Blood comes back in normal range. I am also tested for Heavy Metals in my blood. It comes back negative.

June 2006
The endocrinologist gives me a referral for a Gastric Emptying Scan. Findings for the solid emptying scan: “42% gastric emptying was demonstrated at 60 minutes. The T ½ time is 66 minutes. The T ½ time is within normal limits.” Findings for the liquid emptying scan: “83% of gastric emptying was demonstrated in 60 minutes. The T2 time was 18 minutes. No evidence of obstruction suggested. Normal gastric emptying examination.”

I also have an Abdominal Ultrasound performed. Findings: “Liver is homogeneous in echotexture. No intra or extrahepatic biliary dilatation. Gallbladder is normal without stones, adjacent fluid or wall thickening. Pancreas, limited evaluation, unremarkable. Common bile duct measures 1.6 mm. Right and left kidneys measure 11.5 cm and 11.2 cm in length, respectively. No hydronephrosis, renal mass, or suspicious calcification. Spleen is homogenous and normal size. Aorta is nonaneurysmal. Inferior vena cava and retroperitoneal structures appear normal. Normal examination.”

July 2006
I am referred for a HIDA scan with CCK. The result was “Gallbladder ejection fraction 91%.” I also undergo a Thyroid Uptake and Scan. Findings: “6 hour images show an asymmetric gland, right lobe is larger than the left. A discrete mass is not seen. 6 hour uptake is 10.2%. 24 hour uptake is 20.9%. Both are within normal limits.” Impression: “1) Asymmetric gland, right lobe is larger than the left. While a discrete mass is not seen, potentially there could be a space occupying cold nodule in the upper pole of the left thyroid lobe giving this appearance although is felt to be unlikely. Correlation with thyroid ultrasound is recommended. 2) Normal 6 and 24 hour uptakes.”

August 2006
I go in for the recommended thyroid ultrasound. Findings: “Right thyroid lobe is 5.9 x 1.8 x 1.8 cm. The left thyroid lobe is 4.9 x 1.6 x 1.3 cm. This does correlate with the asymmetry seen on recent I-123 scan of 7/17/06. There are no nodules. Color Doppler imaging was normal. The isthmus is 4 mm.”

September 2006
More blood work from the endocrinologist. TSI comes back at 98 in a range of 125 or less. Free T3 is high at 437 in a range of 230-***. TSH is normal at 0.95 in a range of 0.4 - 5.5. Free T4 is normal at 1.4 in a range of 0.8 - 1.8.

October 2006
I am tested for Chromogranin A. The result is normal at 21.6 out of a range of 36.4 or less.

November 2006
I see a different gastroenterologist who says that the first doctor performed the endoscopy wrong and he wants to do it right. He performs a push-on endoscopy and takes biopsies from everywhere. The bile drainage biopsy has the comment of: “8 cc’s of green thick cloudy fluid are prepared by the CytoPrep tech as a cytospin slide for review by the Pathologist. Significant background amorphous material is present. No definite calcium bilibrubinate or cholesterol crystals are seen.” The biopsy of the small bowel has the following comment: “Villi are normally formed without evidence of blunting or fusion. The lamina propria demonstrates normal numbers of mononuclear cells. No acute inflammation or granulomata are identified. Crypts are intact with normal goblet and Paneth cells. No atypia Is identified.”

December 2006
My throat starts to hurt and I notice that my tonsils are swollen. I also start developing tonsil stones, which hurt and block part of the airway. I go in to see an ENT. He examines me and says that he cannot see up one of my nostrils. I tell him about the retention cyst and he orders a CT scan of the sinuses. The findings are as follows: “The maxillary sinuses are notable for almost complete opacification of the right maxillary sinus due to a large maxillary sinus retention cyst. No substantial change. Mild left maxillary sinus mucosal thickening. Infundibulum appears patent. Right appears partially opacified.

The ethmoidal sinuses are notable for mild mucosal thickening. Ethmoid fovea intact. The front sinuses are clear. The sphenoid sinuses are notable for mild mucosal thickening. The mastoid sinuses are clear. The nasal septum appears to exhibit mild-to-moderate leftward nasoseptal deviation. Associated small spur.”

That ENT doesn’t deal with retention cysts so I am referred to another ENT in the same group. He takes a look at the test results and says that we need to remove the cyst and fix the deviated septum.

January 2007
I go in for the nasal surgery. I have the worst few nights of my life. It drags into weeks and months. The biopsies come back. The biopsy of the contents from my right sinus cavity: “Multiple fragments of respiratory mucosa with moderate chronic sinusitis. The chronic inflammatory cell infiltrate in the submucosa is composed of lymphocytes and rare eosinophils. Minor salivary gland tissue and unremarkable bone. The biopsy of the contents from my left sinus cavity: “The lamina propria of the respiratory epithelium contains a moderate chronic inflammatory infiltrate composed of plasma cells, moderate numbers of eosinophils and lymphocytes. Also present are fragments of bone and minor salivary gland tissue.”

April 2007
I get an EKG at my internist’s office. It comes back normal. The ENT orders blood work to determine my allergies. IgE comes back high at 191 out of a range of 0 - 114. I am highly allergic to cat dander, dog dander, Bermuda grass, redtop grass, A. Tenuis, olive tree, mugwort, and Russian thistle. Also, I am allergic to peanuts and walnuts. They start me on allergy drops.

May 2007
My nose isn’t healing at all. My tonsils are still inflamed and I’m still getting tonsil stones. I go and see a new internist. He does an EKG and it is normal. He orders blood work to test for Reiter’s disease. I test negative for the HLA-B27 Antigen. My calcium is high at 10.5 out of a range of 8.6 - 10.2.


It is now August. My nose is still not healed. The ENT keeps telling me to take Nasonex or Astelin but I’ve already had a very bad reaction with them. I went and saw a different ENT and he told me that my sinuses are very dry and that it could take a long time for dry sinuses to heal. He recommended that I start dropping Ponaris (a mixture of oils) up my nose to moisturize the passages. He also said to quit taking any antihistamines, which is in direct conflict with what the first ENT said. Thus far, I have had a bad reaction to the Ponaris including abdominal cramping, sore throat, and feeling like I’m getting a cold.

All of the other problems continue. I have a lot of gastrointestinal discomfort. I still have the scapular and lower back pain. I have stopped losing weight but I look disturbingly thin. I have been unable to gain any of the weight back. I have not urinated blood in over a year.

Some of the problems were not documented. There have been periods in between all of this where I have gotten severe rashes on my elbows, knees, and ankles. It only happens on the joints and it is very heat sensitive. Exposure to heat or sun makes the rashes flare up even worse. It is intermittent and comes in bouts that last several weeks. The rashes themselves are red, bumpy, and raised off of the skin. I went and saw a Dermatologist and he treated me like I was a child. I was 21 at the time and he literally told me that “mommy must have changed the detergent or soap.” Nothing had been changed. I’d been using the same soap AND detergent and I wasn’t exposed to anything new. He gave me some steroid cream to put on the rashes and told me to come back in two weeks if they were still there. I used the cream, which seemed to melt away layers of the skin, but of course the rash was still there two weeks later. I went back in and he was even more rude and dismissive. Nobody has ever been able to explain what the rashes are or why they occur.

I have also had many nosebleeds during all of this. When I get a nosebleed, it really bleeds and I have trouble getting it to stop. This has happened both before the nasal surgery and after.

The pain has continued throughout this entire period and if anything has worsened. It interferes with my life on a daily basis. I have come to a point where I no longer know what to do. All of the doctors seem to be clueless or too apathetic to even try. That is why I’m putting this out there; just in case someone has experienced this or knows someone who has been through this and can help me find the answers.

I have obviously undergone many, many tests and could not possibly list every result here. If you are aware of any tests not mentioned above, please let me know and I will look over the results to see if the test has been done and I will post the results. Also, I have pictures of the rashes. If anybody needs to see them, let me know. Thank you so much for your time and any help you can give me.