Tracking symptoms, labs, and other issues pertinent to finding diagnosis of the chronic illnesses that I've been thriving through in my life. There is some comic relief to rid the tensions with the medical industry at large.
Friday, January 16, 2015
What Stress Does to Me
I had a stressful event last week. The day of I went into convulsions that started at my back, the location of the growth and worked it's way up my spine until it hit my head. Had I not been on seizure medicine I would have had one. Two days later I had my sodium levels drop bad enough I woke with heart palpitations, I had to resort to dumping a teaspoon of salt under my tongue to let it dissolve in order to make my heart beat in proper rhythm again.
State of my Affairs
Autoimmune conditions (where the body is attacking itself) I have:
- Hashimoto's: where it's going after the thyroid and causes over 300 processes in the body to go wrong including weight gain.
+ Hashimoto's Encephalitis: where the body attacks the brain, causing inflammation and many cascaded issues.
- Temporal Arteritis: giant red blood cells get inflamed then swell the arteries in the temples.
Autoimmune conditions they are checking me for:
- Sjoren's: one that attacks the saliva glands and tear glands, I don't produce enough saliva and tears so dry eyes and mouth. May need minor tear duct eye surgery to help, not necessary. Will need another eye exam then a blood test to confirm.
- Cushing's (brought on by decades of abuse and living in torture): There is a growth over my adrenal, it used to just be felt, but now you can see it when I bend over. It's getting close to my spine so I am concerned that it.
Test that need be ran:
- DNA allergy panel to nail what foods I'm allergic to (100-3000$ depending which lab I use)
- DNA test through 23andme (100$) to see if I have certain dna mutations that will make recovery difficult. Will determine alterations to my diet and supplement regiment. Need but with the urgency of my adrenal issue, is on the back burner.
- Saliva Cortisol (120$) to make sure my cortisol is high like the urine collection showed, the doctor did bad science and did not seem concerned with retesting me.
- I will need aldesterone, DHEA, and all other adrenal related hormones ran. Most likely they will want to run full work ups on me. Luckily with my co-pay, this is 30$ per lab visit so if I look cute enough I can get them to run it all in one go.
- Contrast CT and/or MRI on my torso (250$ a piece per time I need this done): This will show what is going on in my back and how bad it is.
- I may need an Ultrasound done (50$ per) for diagnostic, they can sometimes tell from USG if it's cancerous.
- Depending on what is shown on my CT, I may need to go in for a biopsy surgery (650$) to test if it is cancerous. Then pending that I may have to try to afford the protocols. People go broke through the costs off fighting cancer so this is a concern of mine. I may opt for cannabis oil which will run me about 2000-6000$ for the full treatment, which is cheaper than regular cancer treatments by far.
Sunday, January 11, 2015
Physical Results
I have noticed zero physical changes when I am paleo, AIP, GAPS, following food allergens, or eating within what I can afford/find. Whatever is the underlying thing in my system besides hashimoto's or besides autoimmune is pissing off my body worse.
The only things that seem to give me any form of bettered quality of life are WP Thyroid and Topamax.
With WP Thyroid I notice that it does NOT suppress my TSH down to 0 like it should be, I'm barely near the cut off for the danger line if I wanted to have a child. The endo does not seem to understand this. There is something awry here, she's not getting it. I suspect adrenal involvement since my liver tests keep coming back optimal. WP seems to be dropping out the thyroid specific symptoms, but leaving Cushing's specific ones, including an expanding lump around the adrenal location.
Probiotics: they seem to cause more issues than solve. I am at the bottom of a box of Ohirra's which is highly recommended. It was the only thing I've had today and it bloated me out about 3" and gave me diarrhea. I don't have that kind of reaction to ramen noodles or toast. I haven't eaten in two days either so it's not some latent food allergy. At least it's just bloating and not the constipation like I get from acidophilus by itself.
With all of this I have a hard time justifying not taking up a ramen only diet for the time I need to save up for my medical testing. I need to drop my food budget to 50$ a month. Ramen is the only way this can happen or other equally as bad 99 cent store packaged food. The system is designed for the poverty sector people to fail and be sick.
Wednesday, January 7, 2015
Herbs, Teas, Alt Healing
Teas
The current list I cycle through is: Dragonfly Earth Medicine Essential Cocoa- Beneficial Elixir (This is a tea of cordycep, chaga, and reishi mushrooms with cinnamon and cocoa), nettle, roasted dandelion, moringa, pau d'arco green tea kombucha, green tea goji berry, decaf lotus blossom green tree, darjeeling, sweet and spicy, hibiscus, korean ginseng, chai vanilla caramel, chai pumpkin spice, fruit sangria, tropical green tea coconut rum, pomegranate cider, pumpkin spice.
When I'm feeling like I'm coming down with something I will make http://paleodragon.blogspot.com/2014/10/dragons-fire-tea-cold-and-infection.html
I am also prone to get into my herbs to blend together specialized decoctions, infusions (both technical terms for teas), tinctures, essential oils, etc. in order to make Old World remedies to heal myself. I consider myself a fusion approach to healing since I'l use old and new world approaches when appropriate.
Spices
I like to use a wide variety of spices but I have a core blend that I consider my main healing blend: turmeric, black pepper, black cumin, coriander, cinnamon, chili pepper, cayenne, and paprika.
Others I use frequently are za'atar, sumac, Greek blends, creole blends, jerk, and adobo. Always use Real Salt in my food and 1 tablespoon in my 30 oz water bottle. I may venture into other things as I try new recipes.
Alternative Healing Measures
- Reiki: while I did feel a lot better, pain went away, it did not slow down or reverse the progression.
- Biofeedback: no change
- Meditation: various techniques, no change in health
- Crystals: no change
- Alchemy: no change
Noteworthy Things in Labs
Labs
02/14/11: From 2008 til this point I was on iodine therapy for assumed thyroid malfunction due to iodine deficiency (no actual iodine test to prove it before hand) and something akin to autoimmune paleo gauged by immune reactions. I went to the university hospital for testing.
- TSH 22.9
I was put on Levothyroxine 25mg and sent to a low income clinic closer to home. While there I went through a few raises of Levo, but I did not get copies of my lab work so I don't have the numbers. I was "normal" but all thyroid patients know what that is.
- TPO >900 was mentioned
From 12/12-08/13 I had no meds what so ever due to issues with the free clinic. I had to wait til I got my insurance at work then a few rounds of convincing them I needed into a specialist to get back on thyroid meds. During this period I was on regular cannabis use, non-smoking.
03/27/13: taking Adrenal Fatigue Fighter and on paleo diet
07/03/2013: CT scan of my brain to check for physical causes of the migraines
- All clear, no deformities. Still getting the spasms and migraines.
- Most likely need MRI eventually
07/09/2013: taking Actalin on paleo diet
11/05/2013: Armour Thyroid 30mg, NO adrenal or thyroid supplements, on paleo still
02/04/2014: Armour Thryoid 90mg, NO adrenal or thyroid supplements and due to money I had to drop off the paleo diet and drop off cannabis use.
In January I had the swine flu for a few weeks, ended up in the ER for a saline bag. Absolutely lost control of the autoimmune factor.
05/08/2014: Armour Thyroid 90mg, with Actalin and Adrenal Support, no paleo
09/06/2014: Armour Thyroid 90mg, with Adrenal Support and cordyceps, no paleo
11/10/2014: WP Thyroid 97.5mg, Cell-Fuel, NAC, no paleo
*need to retest the cortisol, I didn't quite get all of the collection done properly, missed 2 voidings of the bladder. That's too close to a positive for Cushing's which would definitely explain the lump in the back that feels like it would be a tumor and explain the stubborn weight. Need to properly retest to make sure, even for my own sanity.
05/21/2015: WP Thyroid 97.5 mg, Topiramate 75 mg, NAC, Vit D3 10k mg every other day, kali sulphur. On absolute junk food-poor diet.
*I need to look into these a bit more, but the results are absolutely confusing me given that I'm eating what I can scavenge from work (toast, doughnuts, etc), and 711/fast food: sandwiches, energy drinks, fast food, etc. Plus I way upped my vit D3 intake (10k from 2k) with no improvement. Also massively dropping weight. Could this all be from the topiramate addition (treats hypothalamus problems)?
06/25/2015: WP Thyroid 97.5 mg, Topiramate 100 mg
06/29/2015: WP Thyroid 97.5 mg, Topiramate 100 mg
10/07/2015: WP Thyroid 97.5 mg, Topiramate 100 mg; dropped off of supplements due to money, 99 cent store for groceries for the most part.
I haven't thought of this in nearly 10 months so my reflections are a bit dusty, but here they go. When I took the values for the various cortisol tests at the right times but my sleep cycles were opposite what one would expect to see.
My saliva cortisol was a midnight collection; but it was my waking value, so while <= .09 is correct for midnight, .04-.56 is correct for waking. Either way, the .98 is too high but did not get flagged for some reason.
ACTH plasma was collected at 8am per required, but it is my normal time for bed. The value of 22 is what my body is putting out right before bed, how high is it when I wake?
Cortisol, total blood serum value 7.1 taken at 8a (again, right before bed), is this too high before bed? Their values are assuming waking values.
The 24 hr urine collection, I was so dehydrated I could barely give a collection. So my dehydrated value was in the middle, probably skewed the reading. No credible doctor accepts this test as an acceptable representation of cortisol for the day.
FT4 and FT3 both too low still, TSH still high enough to cause miscarriages if I was pregnant... how could that endo consider me "normal" or "fine?" I did not even get a damned visit after this. I only had one visit with her.
01/20/2016: WP Thyroid 97.5 mg, Topiramate 100 mg; 99 cent store diet.
This was one of those surprising finds. There wasn't anything found in the spot that triggers migraines when I get touched, no micro tumors in my cerebral organs, nothing I had expected to find. Instead I found the beginnings of tumors in my sinuses that are closing them up. Fun, I may have to go to an ENT style doc for sinus and ear surgery to remove all of it. Who knows, maybe the infections and pain will leave then.
---- Insurance switched groups so I lost all of my previous doctors starting a struggle of diagnosis all over again -------
06/23/2016: WP Thyroid 97.5 mg, Topiramate 100 mg; still on the 99 cent store diet for lack of money. (from GP)
Here is where I have to relearn some crucial lab reading skills. It appears that my liver is having some troubles from what the BUN, BUN ratio, and the USG say. Is it viral, liver damage, severe dehydration, or did I do this to myself via extended anorexia? High platelets, always high. Higher sodium, but still low for what I should have. I've never seen my FT3 and FT4 this low, yay my old endo taking the "this patient doesn't need appointments" approach. My medicine is supposed to keep the TSH suppressed to 0, I'm assuming that it's keeping it below 3 and if I was on Levo (or other synthetic) I'd have a much higher TSH, like back to 30. I was pleasantly surprised that my inflammation markers were so low this time. With my diet lately and marked water retention I had expected a much higher result
During a follow up appointment I asked about why the low markers were not a concern and why they meant something good; he said "that just shows me that you are drinking too much water and your liver and kidneys are hyper active. You are in remarkable health." (I keep hearing how I'm in remarkable health from doctors.) I asked about the chronic high platelets; other docs bring it up but no one seems concerned to address it and if I should start a blood thinning style diet, He said they were not high enough to be alarming, they need to be up to 800 range to start to worry. OK fine...
Compilation
I compiled a graph to track my thyroid values and make it really obvious where I stand versus the optimal ranges. I did this for my previous endo back in 2014 so she had everything she needed at one glance. She didn't care, but I decided to update it for my new one anyways. This seems too self explanatory to be missed, but docs seem dense.
07/06/2016: WP Thyroid 97.5 mg, Topiramate 100 mg; 99 cent store diet.
I was certain that they were going to find cysts in my kidney or at least it swollen. I wonder if what I'm seeing is a result of my anorexia, toxins (metals, LPS, etc), viral, or a slow progression of my bad liver at birth. More testing will be required to see what's going on.
08/04/2016: WP Thyroid 97.5 mg, Topiramate 100 mg; 99 cent store diet, NAC, Himalayan Liver Support
(image incoming when I get the copy of it)
I got a call from my gyno USG stating that I have a polyp in my uterus, but nothing more concerning. I'm getting bumped to a specialist for it and my hormone imbalance.
10/03/2016: WP Thyroid 113.5 mg Topiramate 100 mg: 99 cent store diet. NAC Himalayan Liver Support (from my neuro)
Neuro saw these labs saying "optimal health and nothing wrong with me" offered me an antidepressant. I took an increase in my Topiramate to 150mg instead.
Follow up with my GP in Feb, saw this copy as updated blood labs: I am still in optimal health, took another round of check ups. I added in Vit A, beta carotene, D3, and some key amino acids. I need to know how to tweak my diet if there are any deficiencies or excesses to address. He seemed annoyed by that and by my DNA proof of needing to see these things. I was concerned because of the months of active infections that took my voice, hearing, and sight followed by weeks of hives. Now days of paralysis because I had to fast and not address the AMD1 deficiency issue.
02/08/2017: I didn't get a lab reading for it, but my new endo has an in office US machine so he did his own exam. He said that I had all of the abnormal texture of Hashimoto's but none of the previously found nodules or goiter was present. So I've been successful in keeping back my Hashimoto's. I don't know about other autoimmune developments since I can't get straight diagnosis or another doc to run preemptive screening on other systems yet. But so far great on Hashimoto's management.
The Impaction
I neglected to get a pic of what I looked like back in October. I was in so much pain from being impacted to the point I could not even ...

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This is going to be a place I will compile anything health related so I have an easy to reference resource for my doctors. This is not a die...
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I have noticed zero physical changes when I am paleo, AIP, GAPS, following food allergens, or eating within what I can afford/find. Whatever...
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Things in my DNA that could explain the symptoms that are neither explained by Hashimoto's nor treated by thyroid treatments: - Familial...