Still losing weight and hair

[DarknessEmbraced]

I'm going to try to eat either a bowl of oatmeal or cereal or some toast at lunch instead of the liquids I have been doing for a long time. I hope my stomach will behave. I'm still losing crazy amounts of weight, still get cold sweats and my hair is very thin because it's falling out even more. Something needs to be done! I need to get a hold of my GI's office too. My family doctor telephone appointment is tomorrow. I'm worried that nothing I do will stop the weight loss and hair loss. The blood tests my family doctor ordered were normal. I feel shaky and weak all the time. My strength is gone.

[roadrunner]

I usually post what I see as useful information, not expressions of emotion or empathy (quintessential male, my wife would say!), but I really feel for you right now, and since I have nothing useful to add, I just want to wish you the best for understanding what’s going on and getting better! Good luck with your phone consult tomorrow.

[stu]

You have to be one of the most supportive people around here . I don’t have anything helpful to add but I sure hope your team does and soon .
Take care ,
Stu

[Punky44]

Thinking of you! How did your doctor’s visit go today?

[DarknessEmbraced]

My family doctor said all of the blood tests she ran were normal. She's referring me to a dietician. She said a dietician may be helpful. I guess it can't hurt to talk to a dietician but it doesn't treat the underlying cause. We agree that my hyperparathyroidism is most likely causing my weight loss. I need to be able to get another telephone appointment with my endocrinologist set up. I need the high calcium to stop destroying my body. It's affecting my bones, my blood pressure(on two high blood pressure medications), my digestive system and my kidneys. I need a third parathyroid surgery. I sent an email to my GI's office to see what he says about the weight loss and also the small amount of rectal bleeding I had a couple of times. It's most likely due to a fissure or an internal hemorrhoid but it still concerns me. I had bleeding with my tumor and sometimes have bleeding during my ischemic colitis attacks. So I'm not really any further ahead. My endocrinologist's receptionist said I would hear from him in early January but there has not been a telephone appointment date and time. I did ok eating the oatmeal and Boost plus protein last night. I ate two pieces of toast with peanut butter, a small amount of honey roasted peanuts and the Boost plus calories. I feel uncomfortably full right now. Thank you everyone.

[Punky44]

Glad to hear all the tests were normal! Hope you can get some relief for your issues soon!

[DarknessEmbraced]

Thanks, me too. I wish more was being done though.

[Gravelyguy]

So sorry you are dealing with this but glad blood tests came back good.

Dave

[DarknessEmbraced]

Thank you Gravelyguy. My GI isn't taking me seriously at all! I emailed his office and found out he won't see me until April 7th! He never takes me seriously and always makes me wait months to see him. Then when I do have an appointment he's still no help! I can't change doctors as there is a doctor shortage here. Now, I'm pinning all of my hopes on my endocrinologist!

[Green Tea]

... I need to be able to get another telephone appointment with my endocrinologist set up... My endocrinologist's receptionist said I would hear from him in early January but there has not been a telephone appointment date and time...

... Now, I'm pinning all of my hopes on my endocrinologist!

If you are going to be talking to your endocrinologist soon, then he will probably need to have the results of all your recent relevant hormone tests. Some of the test results he might want to see are listed below. But the main questions right now are: Were the relevant tests ever done, and if so, where are the test results located right now -- in a file cabinet somewhere?? And how can your endocrinologist gain access to these test results before he talks to you?

Calcitriol (I.e. bio-available Vitamin D3) Note: Vitamin D is actually a hormone produced in the kidneys.
https://labtestsonline.org/tests/vitamin-d-tests

PTH Parathyroid hormone test
https://labtestsonline.org/tests/parathyroid-hormone-pth

Thyroid panel
https://labtestsonline.org/tests/thyroid-panel

A thyroid panel usually includes tests for:

TSH (thyroid-stimulating hormone)
Free T4 (thyroxine)
Free T3 or total T3 (triiodothyronine)
Calcium
https://labtestsonline.org/tests/calcium

Estrogenic hormones
https://labtestsonline.org/tests/estrogens

You said earlier:

...The blood tests check my thyroid, electrolytes, blood counts, iron, liver and kidneys...

This list looks incomplete and suggests that some of the blood test results that the endocrinologist will need to see might not even exist because they might not ever have been done. For example, where is the parathyroid PTH test? Where is the Vitamin D test?

You also said,

My family doctor said all of the blood tests she ran were normal.

But if you did in fact have an electrolyte panel in your most recent blood test --presumably containing a calcium test -- then how can you now complain of high calcium levels when your doctor just said that all of your recent blood tests were normal?

Also, right now because of COVID-19, the test for Vitamin D deficiency is very important, especially for persons living in northern latitudes where there can be a shortage of direct sunlight. Do you know if your current level of Vitamin D is in the normal range?

Some reading material:

10 hormonal diseases in humans
https://www.studyread.com/hormonal-diseases/

List of hormones and their functions
https://www.studyread.com/list-hormones/

[DarknessEmbraced]

My endocrinologist checked my vitamin D, PTH and calcium a few months ago. He usually checks them every couple of months. Because it's been longer since I talked to him they haven't been checked. My family doctor and endocrinologist don't check T3 and T4. They only check TSH. My family doctor doesn't check hormone levels. My gynecologist did that a few years ago. They were normal. Calcium levels weren't part of the electrolyte panel. Calcium has always been a separate blood test. My calcium was slightly high the last time it was checked. It has also been borderline high which is the highest end of the range. My family doctor would see that as normal. My PTH has been high for many years. I can't take vitamin D because it makes me feel much worse. My vitamin D is very deficient but that's because of the hyperparathyroidism. Taking vitamin D makes the hupercalcemia worse. When I take vitamin D my bone pain, joint pain, muscle cramping are much worse. The last time I took vitamin D in December it caused squeezing chest pain and my heart rate went between 112-113 while at rest. Once I stopped taking vitamin D the squeezing chest pain completely vanished. Calcium affects the heart as well. I don't have a telephone appointment date or time set up to talk to my endocrinologist. I have been waiting for him to call me back. The last time I talked to him was October 7th.


Thank you for the links.

www.parathyroid.com

That site explains about hyperparathyroidism. I had both left parathyroids removed in two surgeries(the first surgery didn't fix it) in 2004/2005.

[Green Tea]

... She's referring me to a dietician. She said a dietician may be helpful. I guess it can't hurt to talk to a dietician but it doesn't treat the underlying cause. We agree that my hyperparathyroidism is most likely causing my weight loss.... Thank you everyone....

Where do you stand with respect to your dietician referral? Do you have your appointment set up by now?

You may want to talk to a dietician who understands IBS. There is one in New Brunswick who lists "Gut Health (Digestion, IBS, IBD)", and "Managing Food Allergies" among her specialties. She does consultations by video-conference or teleconference:

New Brunswick Dietician

Reading material

High Calorie Snacks
https://stanfordhealthcare.org/medical-clinics/cancer-nutrition-services/during-cancer-treatment/high-calorie-snacks.html

High Protein Foods
https://stanfordhealthcare.org/medical-clinics/cancer-nutrition-services/during-cancer-treatment/high-protein-foods.html

Increasing Calories and Protein with Lactose-free Foods
https://stanfordhealthcare.org/medical-clinics/cancer-nutrition-services/during-cancer-treatment/increasing-calories-and-protein-with-lactose-free-foods.html

Avoid High-Fructose Corn Syrup
https://www.wikihow.com/Avoid-High-Fructose-Corn-Syrup

A book on gut bacteria
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53006&p=418212#p418212

Eating to gain weight
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62964&p=497031#p497031



...As for what to eat, I don't know what to suggest, but I can give you a list of what I ate in order to regain some of my lost weight. (Note: be sure to check with doctor before trying any of these): Ripe avocados, macaroni with tuna and cheese, peanut butter, protein bars, ginger snaps, bananas, cooked oatmeal, canned sardines, canned mackerel, blueberry yoghurt smoothies.
...
Ref. https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52710&p=414918#p414918

[DarknessEmbraced]

Thank you Green Tea. I haven't received a call from the dietician. Usually my family doctor refers me to someone local. Thank you for the reading material and the recommendation. I'm still waiting for my endocrinologist to call. My asthma is flaring up. I have prednisone in the house in case I need it. I am following the yellow zone for my asthma action plan. I hopefully, will be feeling better next week. I will call my endocrinologist's office next week.

[Green Tea]

Thank you Green Tea. I haven't received a call from the dietician. Usually my family doctor refers me to someone local....

There is one registered dietician in town. Her contact information is here. I would suggest giving her a call to see if you can set up the appointment soon.
Registered Dietician, Fredericton