Still losing weight and hair

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DarknessEmbraced
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Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Wed Jan 20, 2021 1:39 pm

Thank you Green Tea. I have been on prednisone in the past for my asthma I had to start taking prednisone on Saturday. 50mg a day for 5 days. Today is my last day of prednisone.I know it has side effects but I don't have a choice but to take it. My doctors won't prescribe medication for my nebulizer. They say my inhalers are enough. If I want a breathing treatment I have to go to the ER. I use saline in my nebulizer for congestion. I asked my family doctor's receptionist(doctors here don't have nurses) to ask her to call in more prednisone. I had a covid test Monday which was negative. I called my pulmonologist's office only for his receptionist to tell me that he's not due to see me until August. He refuses to see me more often than once every 9 months. My telephone appointment with my GI isn't until April! I knew he wouldn't take me seriously. My endocrinologist is waiting until March to do a parathyroid hormone blood test and calcium blood test. Then it's another 7 to 10 days for the report to be back. Apparently, he's going to talk to other endocrinologists who are supposed to be where I live. I highly doubt he will talk to anyone since he's been saying he would talk to his colleagues since October 7th! I don't feel like I can really rely on any of my doctors and most of the time I feel like I'm on my own.


Update: My family doctor called in prednisone. My boyfriend will go to pick it up later. I'm glad she did that.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Wed Jan 27, 2021 1:44 pm

I've been dealing with a really bad asthma flare since January 11th. I was on two 5 day prednisone bursts which didn't help. The shortness of breath and congestion kept getting worse. I went to the ER Saturday. Chest x-ray, ekg, and blood tests were normal. My family doctor called in a longer prednisone taper and medicated nebules for my nebulizer. I was weighed at the ER and found out that I weigh 112 pounds. I weighed 116 in October and 138 during the summer of 2019. My family doctor was going to order chest, abdominal, and pelvic CT scans due to the weight loss but changed her mind when she saw that it hadn't been long since the last time I had had scans. She ordered CEA and CA 125. My body hasn't liked going from 50mg of prednisone down o 45mg yesterday. Today, is particularly bad with the shortness of breath. I called my family doctor's office and was told that she would call me tomorrow. I kind of wonder if the weight loss is affecting the severity of this asthma flare? I've never had an asthma flare this bad. My family doctor in the ER said it's unlikely I would have covid since my test was negative last Monday.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Still losing weight and hair

Postby roadrunner » Wed Jan 27, 2021 6:52 pm

I think it is very unlikely that you would be having shortness of breath due to COVID and have normal blood tests and a normal chest x-ray, as well. I hope you get this sorted soon!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
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DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Thu Jan 28, 2021 10:00 am

Thanks. My family doctor is calling sometime today. I'm going to ask her to slow down the prednisone taper. You're right that it's unlikely to be covid.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Sat Feb 27, 2021 2:32 pm

I went to the ER yesterday for continuing shortness of breath. The ER doctor did a thyroid blood test which showed I have hyperthyroidism. He said hyperthyroidism could be the reason I am losing weight, losing hair, and that I'm short of breath all of the time. He said to stop taking synthroid(I have been on it for years for hypothyroidism) and he gave me a form to get blood tests done in April. I stopped the synthroid. I left a message for my endocrinologist telling him about the diagnosis, stopping synthroid, asking is my thyroid ultrasound could be moved up, asking for him to check T3 and T4 as well as thyroid antibodies. I'm not due to see him until my blood tests results are back. My blood tests are March 1st.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Still losing weight and hair

Postby stu » Mon Mar 01, 2021 1:20 pm

Hi ,
Sorry to hear you had to go to A and E but delighted to hear you got at least some insight into what you have been going through . What an ordeal. Hope you get this adjusted and the support you need .
take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Sat Mar 06, 2021 11:19 am

Thank you Stu. I hope so. I'm getting the gastric emptying test done on March 17th.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Still losing weight and hair

Postby Green Tea » Sat Mar 06, 2021 2:11 pm

DarknessEmbraced wrote:...I'm getting the gastric emptying test done on March 17th.

At least 2 days before the test you need to inform the doctor of all the medications you are still taking. It says so in the instructions:

https://www.uwhealth.org/healthfacts/dhc/7870.pdf

  1. LIST OF MEDICATIONS
      Aspirin - (acetylsalicylic acid)
      Benadryl - (diphenhydramine)
      Buscopan - (hyoscine butylbromide)
      Colace - (ducosate sodium)
      Decadron - (dexamethazone)
      Deltasone - (prednisone)
      Dicetel - (pinaverium bromide)
      Dilaudid - (hydromorphone)
      Epi-pen - (epinephrine)
      Fosamax - (alendronate)
      Gas-x - (simethicone)
      Gastrografin - (diatrizoate sodium)
      Imodium - (loperamide)
      Lax-a-day - (polyethlyene glycol 3350)
      Metamucil - (psyllium)
      Metoclopramide - (metoclopramide hydrochloride)
      Nebuliz - (hypertonic saline)
      Pulmicort Flexhaler - (budesonide)
      Reactine - (ceterizine dihydrochloride)
      Singualir - (montelukast sodium)
      Symbicort - (budesonide and formoterol)
      Synthroid - (levothyroxine)
      Tiazac (diltiazem)
      Tylenol - (acetaminophen)
      Veramyst - corticosteroid nasal spray
      Zantac - (rantidine)
      Zofran - (ondansetron hydrochloride)
      Zithromax - (azithromycin)
This includes any estrogen-related drugs you may be taking, because the doctors need to take into account your monthly estrogen cycle to properly interpret the test.

DarknessEmbraced
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Re: Still losing weight and hair

Postby DarknessEmbraced » Sat Mar 13, 2021 10:39 am

Thank you Green Tea! That is very helpful! I was told that I only needed to not take any medications which affect motility. I won't take dicetel or buscopan. Is that list of medications ones I can't take? I can't have anything to eat or drink for 12 hours before the test. So that means nothing after 8:15pm. I will have to wake up early that day so that I can call the taxi and get to the hospital by 8am. I will have to do covid screening before I will be allowed in which takes a few minutes. I have the mirena iud but that's it.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Still losing weight and hair

Postby Green Tea » Sat Mar 13, 2021 2:28 pm

DarknessEmbraced wrote:Thank you Green Tea! That is very helpful! I was told that I only needed to not take any medications which affect motility. I won't take dicetel or buscopan. Is that list of medications ones I can't take? I can't have anything to eat or drink for 12 hours before the test. So that means nothing after 8:15pm. I will have to wake up early that day so that I can call the taxi and get to the hospital by 8am. I will have to do covid screening before I will be allowed in which takes a few minutes. I have the mirena iud but that's it.

No, that list (in my last post) is a list of all meds that you have ever taken in the past, according to what you have said in past posts. What you need to do is go through that list and note which meds are designed to affect bowel motility and make sure you are not taking any of them. The prohibited meds would include the two that you have already mentioned (Dicetel and Buscopan) plus others like Colace, Imodium, Lax-a-Day, etc. Also, any high-strength prescription pain meds should probably not be taken because they can lead to constipation. Just check your medicine cabinet and see what you have there for speeding up or slowing down bowel movement. The other meds on the list ( for asthma, thyroid, etc ) probably would be OK to take, but check with your doctor just in case.

The difficult part of the test seems to be that the test is 4 hours long and you have to show up at Radiology on time for each of the scans they need to do. So there is the problem of what to do with your spare time while you are waiting for the next hourly scan. You can't go out to Starbucks for a latte because you are not allowed to eat or drink anything during the 4 hour test period. So, what are you going to do to pass the time away and keep warm until the next scan? Does the hospital have a lounge or a waiting room?

I would also suggest that you plan to have easy-to-digest meals from now until Tuesday night so that your bowel is not all backed up by the time you have to start fasting. You can call the doctor or the hospital on Monday to see if they have any last minute instructions or advice on what to do or not to do over the next few days.

Best wishes for a good Gastric Emptying Test !

DarknessEmbraced
Posts: 3816
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Fri Mar 19, 2021 10:35 am

Thank you Green Tea. I don't have a vehicle so when I had the gastric emptying test I stayed at the hospital the entire time. I went to the Nuclear Medicine department for the test. I was given oatmeal into which a radioactive liquid was injected. There were two small pieces of toast, a small carton of milk and a small orange juice. I'm a slow eater and only had 10 minutes to eat. I was able to finish the oatmeal which was the most important. I drank the milk, ate most of a piece of toast and ate all of the toast. I had to lie down in the scanner right after eating which made me feel nauseous. The scans only take 1 minute. Then I spent the next two hours in the Nuclear Medicine waiting room. I had a book with me and my iphone. Every 30 minutes I had a scan. After two hours I had to wait another two hours for the final scan. I went and sat in chairs in another part of the hospital. I read my book and went online with my iphone. I was told that it takes two weeks for the written report to be back to my GI. That he could log into the computer system after a few days to check the results. My telephone appointment with my GI isn't until April 7th so I won't know the results until then.


I had a thyroid ultrasound not long ago to check my nodule. Because it grew a few millimeters I'm to have a repeat ultrasound in a year. My family doctor didn't think my TSH of 0.4 in the ER was that bad. I'm staying off of synthroid until I am able to have a telephone appointment with my endocrinologist. He's on vacation this week and his office doesn't open until March 24th. I've been waiting since October 7th to speak to him again. I am still dealing with hyperparathyroidism symptoms.


Even after my asthma flare and finishing prednisone I'm still having shortness of breath which gets worse with activity. I get weak, dizzy and sweat. A couple of times I have had heart palpitations which make it feel like my heart speeds up really fast and then goes back to normal. I on two blood pressure medications but my blood pressure is high at times. It's the diastolic which is higher. An example is a blood pressure of 126/93. Diltiazem(cardizem) extended release 240mg in the morning and 2.5mg of ramipril in the evening. I sometimes have episodes of chest pain which feel like someone is taking my heart and squeezing it. I get it when my blood pressure is high and my heart rate is 112-114 at rest. I have a congenital heart murmur. An echocardiogram over 10 years showed my fast heart rate and very slight mitral valve leakage. I'm wondering if I have mitral valve regurgitation as I have the symptoms. My family doctor is referring me to a cardiologist. She is also ordering an echocardiogram and an exercise stress test. I hope I won't have to wait long for my testing and to see the cardiologist.


I have a telephone appointment with my urologist next week to go over my kidney ureter bladder x-ray. I hope you don't mind this long health update.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Fri Apr 02, 2021 12:11 pm

My kidney x-ray didn't show nephrocalcinosis yet the ultrasound did. It's confusing. The endocrinologist is just having me do 400iu of vitamin D once a week and if my symptoms don't get worse after two weeks then go up to 800iu a week. I know 1000 iu is standard but that makes me feel really awful so I can't do it. My endocrinologist said that we need to get my vitamin D(15-21) levels up to normal to make certain that it's not my vitamin D making my parathyroid hormone so high. I don't get vitamin D, calcium, and parathyroid hormone checked again until early June. My thyroid ultrasound showed a small amount of growth. My nodule went from 1cm to 1.3cm so I'm getting another thyroid ultrasound next year. My TSH was 0.41. I'm getting it checked on the 15th. I left a message asking my endocrinologist to check free T3 and free T4 because I've heard that TSH doesn't mean much without those levels. My endocrinologist said that if my TSH gets lower than it's hyperthyroidism and many of my symptoms would be caused by that. I have a telephone appointment with my GI on April 7th to go over the results of the gastric emptying test. I'm still losing weight and hair. My stomach bothers me all of the time. My family doctor is referring me to a cardiologist due to the continuing shortness of breath, weakness, sweating, dizziness, episodes of a heart rate over 100 at rest and episodes of high blood pressure. I'm on two medications for high blood pressure. She's ordering an echocardiogram and exercise stress test. I am still waiting for the cardiologist's office to call me and for the echocardiogram and exercise stress test to be scheduled. When my heart rate is over 100 I get squeezing chest pain which always goes away. I have a congenital heart murmur.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

CancerBum21
Posts: 29
Joined: Fri Feb 26, 2021 6:27 am

Re: Still losing weight and hair

Postby CancerBum21 » Fri Apr 02, 2021 7:20 pm

I’m so sorry to hear about your issues. I have hypothyroidism (opposite as you) and that can really mess you up. It really effected my quality of life for years. I’m so sorry you’re going through this too.

I’m surprised that they only tested your THS as it only tells you half the picture of what’s going on with your thyroid. My endrocologist always test ths and T4/T3.
34/M
DX:(Rectal Cancer) 2/15/21
Stage: T1N0M0
TAMIS Surgery 3/10/21
Pathology: T1NxM0 - LIV positive, 1/1 lymph positive Stage IIIA
FOLFOX 6 rounds
Radation & Xelota 5 weeks

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Sat Apr 10, 2021 12:01 pm

Thank you CancerBum! I was on synthroid for years for hypothyroidism. My doctors have always just tested TSH. I'm hoping my endocrinologist added free T3 and free T4 to my TSH blood test on the 15th. It's hard waiting to find out if all of this is due to hyperthyroidism. It's very frustrating! I'm sorry you deal with hypothyroidism.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Sat May 01, 2021 1:02 pm

Lately, I've been getting more episodes of nausea. I have zophran films but I try not to use them because they cause constipation. I already deal with constipation, many small bowel movements a day or sometimes diarrhea. I have cramping after I eat no matter what it is. I have buscopan which sometimes helps. I've noticed white mucus in my bowel movements sometimes which I've read is a mark of inflammation. On days where my stomach is bad I will do a liquid lunch drinking a homemade smoothie. Sometimes it helps. Sometimes I wish I didn't have to eat at all.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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