Progress Update - 26 y/o female in remission

[lotus_03]

Hi all,

It’s been a while since I gave any updates, so thought I’d share how things are going. Long post incoming. I would also appreciate any thoughts or feedback on my current state.

It has officially been a year since I first joined this forum, and thank goodness I found it shortly after my diagnosis. It became my lifeline. My earlier progress posts are elsewhere on the forum, but basically my story was:

Almost 25 yrs old when symptoms first began – watery diarrhea 1-3x daily
Floundered about for a while trying different diet changes without much improvement
25.5 yrs – found this forum and started strict diet changes + vit D
6 months later @ 26 yrs – started mag topical + achieved stable remission (normans most days, like my pre-diagnosis BMs)

I am currently 26 and a half, and while I feel that I’ve made a lot of progress and had some considerable healing, I could use some advice about how to keep moving forward. I would like to raise a family one day, and I just don’t feel at this point that my body is ready yet to take on the challenges of pregnancy health-wise. Besides that, I want to be able to keep up with the demands of my personal and career life, but I am doing everything I can at this stage to keep steadily healing.

Despite my efforts to test new foods over the past year, my current diet/supplement is still:
- roast turkey with skin
- ground lamb
- jasmine rice
- zucchini (peeled just slightly to reduce fiber load, like about 20%)
- yellow squash (peeled just slightly)
- coconut oil
- sea salt
- vitamin D3 5,000 IU
- magnesium topical (homemade. mag salts dissolved in water, added to spray bottle and used 2-3x per day)

I eat this diet for 3 meals a day. Usually a ground lamb soup mix in the morning, and two turkey plates for lunch and dinner. I am at a stable 126 lbs which was my pre-diagnosis weight. I was able to gain back a regular menstrual cycle since starting this diet, as I had previously lost it for a few months prior.

I have just recently organized all of my nutritional deficiencies/intake into a spreadsheet. I know that probably sounds obsessive. I’m trying to keep track of what critical deficiencies I should be focusing on first, as I have yet to establish with a medical practitioner who can help me navigate this more. Highest priority ones are:

- Iodine
- Folate
- Omega EPA & DHA
- Vitamin C
- Iron
- Vitamin E
- Vitamin K

I’ve started testing iodine drops this week and they seem to be OK so far. I’m working on titrating up. I also previously was able to tolerate an algae oil supplement for EPA/DHA, but then I ran out and ordered a new batch. Realized that the new batch that delivered was spoiled and were causing a flare of my symptoms. I’m planning to re-order some and re-test since the first batch seemed to work just fine.

As for my symptoms, the biggest issues I am dealing with right now are sleep disturbances, hair thinning, and what I suspect is the early signs of a thyroid goiter. For several months now I’ve had early morning awakenings and trouble falling back asleep, resulting in 4-6 hrs of sleep some days, which is exhausting. When I’m on a break in my schedule and can really relax, I’ll get 8.5 hrs sleep at the most. But as soon as my schedule gets busy again, the sleep quality gets worse, which causes this vicious cycle of chronic fatigue. I’m sure part of it is anxiety related, but I am also concerned about my thyroid. Just this past week it dawned on me that my thyroid looks noticeably enlarged compared to other family members. And on top of that, my hair is thinning and becoming more brittle. I wish I had noticed this all sooner, but I suspect I’m dealing with some rampant hypothyroidism now from my deficiencies, especially iodine deficiency. Hence testing iodine this week.

I need to get labwork done to see my numbers, but to be honest, I am hesitant to know until I’ve added in some more nutrients. I go back and forth between wanting to try new foods or new supplements, but it seems like I’ve had the most success with adding supplements so far. So I’m working with that for now. But if you have any suggestions otherwise, please let me know.

I was also able to tolerate a few leaves of baby spinach when testing a couple months ago. Had zero reaction. But then I had a flare of symptoms from the bad algae oil batch and I put a hold on the spinach test. Otherwise the next foods on my radar are broccoli, green beans, and maybe kale. I really wanted to add in carrots and sweet potato, but previous attempts this past year seemed to indicate my intolerance to any starchy foods right now, so I’m not sure how to address that.

If you have made it this far, thank you for your time and consideration. This was a bit of a vent session too. I’ve wanted to make more progress this past year, but juggling responsibilities and not wanting to trigger a flare of WD meant that I could only test new items during small windows which were few and far between. I’ve learned a lot this past year, so I want to keep my momentum and continue making progress. I am grateful for any feedback you have to share.

Any thoughts on how to improve my thyroid function? Hair thinning / sleep issues?
Should I keep focusing on supplementation before food testing? Or vice versa?
Should I be taking iodine drops with or without food?

Thank you!
Leena

[lotus_03]

Oh and one more thing I wanted to mention. I've posted about this before, but I also discovered an issue with black mold in a shared bathroom in my home. My older brother uses this same bathroom, and lo and behold, he started experiencing strange WD / loose stool flares intermittently the past few months. Since I have already learned so much about MC diet changes, I helped him to quickly resolve his symptoms with a clean diet for a few weeks, so his symptoms didn't last long. But then this past month his symptoms returned after he had returned to more processed foods. Needless to say we are working on addressing the mold issue in our residence.

Does anyone have any experience treating black mold in the gut??

[tex]

Hi Leena,

I'm certainly no endocrinologist, but it sounds to me as though you might have Hashimoto's thyroiditis. That can cause some of the symptoms you describe, including hair loss. Both Hashimoto's thyroiditis and alopecia areata are associated with MC. Unless you've already checked this out, getting proper lab testing to either diagnose or rule out Hashimoto's should be a priority, Because it can cause many of the symptoms associated with MC as it progresses.

Is the outer third of your eyebrows thinning? That's a pretty sure sign of Hashimoto's.

Regarding your question about supplements (or food), food is always superior to supplements for supplying nutritional needs. If you're searching for new foods to try, have you tried shellfish? Unless you were allergic to them before you developed MC, they should be safe options, including mussels, clams, shrimp, prawns, crabs, lobster, squid, etc.

I hope this helps.

Tex

[lotus_03]

Hi Tex, I will work on getting labwork specific for Hashimoto's. My eyebrows are totally fine, no signs of hair loss. The hair thinning is more diffusely on my scalp - I've noticed more hair shedding overall, more dry/brittle hair growth coming in, and then at my temples I've had more hair loss probably due to scrub caps I wear causing friction and more hair loss. No signs of distinct patchiness anywhere otherwise.

I was wondering if the symptoms are more likely due to iodine deficiency? I realized that my current foods only give around 20 mcg iodine, so not good. I'm hoping the iodine drops will improve things, but either way I should get tested for Hashimoto's just to be safe.

Previously I've tried salmon and seaweed flakes, and both triggered reactions for me. So I suspect I'm having issues with seafood. And I believe I have a histamine intolerance still so I'm wary about shellfish unless I'm able to get some that is super fresh to avoid the histamine build up? Not sure.

I will keep working on testing food though it seems like low-histamine, low-starch foods may be the safest route at this point.

Thank you for your help as always.

[tex]

Iodine deficiency is not known to be common among MC patients, but yes, it can cause hair problems. Iodine deficiency alone doesn’t directly damage hair follicles — Instead, it causes hypothyroidism, and it’s the lack of thyroid hormone that causes the hair problems. Once thyroid hormone levels are corrected (through iodine intake correction, or thyroid medication, if autoimmunity is involved), hair loss often improves — although regrowth can take several months.

Because of the malabsorption problem associated with MC and in most cases, chronic diarrhea, patients are at higher risk of deficiencies in iron, vitamin D, B12, magnesium, and zinc — all of which can contribute to hair thinning and brittleness. And if the disease is active for years, folate, and B7 (biotin) can become deficient and contribute to hair loss/brittleness.

But note that if you have Hashimoto’s, iodine intake is a double-edged sword, because too little can worsen hypothyroidism, and too much may trigger autoimmune flares, which makes the iodine–thyroid–MC connection more complex than for someone in the general population. Therefore, the sooner you can verify or rule out Hashimoto's thyroiditis, the sooner you can determine an optimum treatment plan.

I hope this helps,

Tex

[Catieu]

Hi Leena,
I have been diagnosed with Hashimoto's hypothyroidism and MC.
As Tex says, the most important thing now is to get tests done to confirm whether or not you really have Hashimoto's. You should also have an ultrasound scan to check the lump you mentioned and your thyroid function.
To give you an idea of the symptoms, I'll tell you some of the ones I have when my medication isn't right. I feel very cold, but it's an abnormal cold. People around me can be wearing short sleeves and I'm wearing a jacket and still don't feel warm enough. My hair is falling out and is very thin and brittle. The same thing happens with my nails; they break and split easily. My skin is very, very dry. You can apply moisturizer all the time, but it still looks like a blackboard because you can write on it. Fatigue is also a very common symptom, although it is also associated with MC.
As for the lack of nutrients you mention, I've been on a diet very similar to yours for a year and a half, with very few foods, and my check-ups never show any deficiencies related to the disease. It's another autoimmune condition, so I think that whatever you do to improve your MC should also work for Hashimoto's. Although if there has been damage to it, it's irreversible, as in my case, and the medication is for life.
I hope I've helped you even a little.
A big hug,
Marta

[lotus_03]

Tex – After scrutinizing my eyebrows more closely, I think I may actually have some subtle hair loss. It’s not pronounced, but I have pretty thick eyebrows and it seems like the end tips have lost a bit of hair. Argh. I looked into it and eyebrow thinning can also be a sign in general for hypothyroidism, with Hashimoto’s being one of the causes. I hope out of the two, I have hypothyroid induced by iodine deficiency rather than Hashimoto’s (auto-antibodies produced against the thyroid), if I had to pick the lesser of two evils. The goal will be to get bloodwork to get to the bottom of this. I am going to review local functional medicine practitioners and schedule with one asap.

Do you recall how much iodine would be too much if I titrate the drops up over time? Right now I’m tolerating 110 mcg worth of drops.

Marta – I hope you've been doing well overall. How are things going for you?
Thank you for sharing your experience. My symptoms are limited to the hair loss/thinning, early awakenings, and slightly enlarged thyroid. I’ve also noticed weaker toenails? As in, they don’t feel as strong as how they used to be when I go to clip them. May be thyroid related, or may be deficiency related.

How is your experience with taking thyroid medication for your Hashimoto’s? What is your regimen to take them? And side effects? I know you say the medication is for life, but I wonder about that. I have a close friend who was diagnosed with Hashimoto’s around age 19. She worked with all sorts of doctors to treat her and even had to go on parental nutrition at one point because her digestive system began to fail and she lost so much weight. Then she did a deep dive learning about Hashimoto’s on her own – changed her diet to a whole food plant based diet, removed meat and food allergens from her diet, removed harmful toxins/chemicals and endocrine disrupters in her home environment. And within a few months slowly regained her thyroid function back. She’s in her mid 20s now and is not on any thyroid medication, and her labs are normal.



On another note, I am testing these Desert Harvest B complex tablets recommended by Gabes ( https://desertharvest.com/products/b-co ... De72y6uH-G ) to get my B vitamins in active form and folate. So far haven’t noticed red flag symptoms, so keeping my fingers crossed.

[tex]

Hi Leena,

Our own internal poll (you can find it in the "Polls Related to MC..." category) Shows that as MC patients, we are about 7 times as likely as anyone in the general population to have thyroid problems. I've been taking Armour thyroid supplement for many years.

I have never used iodine supplements, and I know nothing about that, nor do I recall anyone else here doing that, although there might be a few, If you do a search of the database.

Tex

[lotus_03]

I didn’t know that about MC! This is the first I’m hearing about Armour thyroid supplement. Is it a prescription? A google search says it contains both T3 and T4, whereas Levothyroxine contains only T4, which the body must convert into T3. Was there something that led you to Armour instead of Levothyroxine? I’m curious about your experience taking it.

I did pull up some results with the “iodine drops” search. I saw Gabes used to take iodine drops years ago, not sure if she still does now.

[tex]

I've been taking it for at least a couple of decades, now. My reason for using it began with the fact that my free T4 was always below normal. My TSH level was always normal. I had an old country doctor who had practiced for decades before synthetic thyroid hormones received approval. He first prescribed Levothyroxine. I don't recall how my labs checked afterward, but it didn't make me feel any better, so he switch the prescription to Armour Thyroid. Lo and behold, it resolved my low free T4 problem, so I continued to use it.

These days, I'm guessing that you would have to argue long and loud to persuade an endocrinologist to prescribe Armour Thyroid, because they've all been brainwashed by the pharmaceutical manufacturers to believe that synthetic thyroid hormones contain more accurate doses, when published research shows that's simply not true. If you can find it in the archives, there's a story posted by a member here who picked up a thyroid supplement refill, and immediately started feeling bad after beginning to take it. After many others began having the same problem, she learned that her prescription had been refilled with 10,000 times the proper dose, and mislabeled. It caused life-threatening issues, and now she is forced to take a corrective medication for the rest of her life (plus never feeling well).

Here's a quote from one of her posts back in 2007:

I have been ill for a couple of months
Post by Umber » 10 Jun 2007 12:05 pm

And it's not my fault! Darn, things were going so well! MC isn't my big issue anymore its thryoid & hormones......grrrrr! I am on a compound medication for my thyroid (T-3 & T-4). The T-3 mixture my pharmacy got from the manufacturer wasn't diluted and was 10,000 times to strong. So needless to say I was overdosed. My T-3 was 10 times higher than it should be. It put me right back to square one. My adrenal system is shot again. My doc is sending me to a cardiologist to have my heart checked for damage. OMG! I can't believe this! There were eight other patients effected and two of them ended up in the ER. A couple of them are suing. I haven't decided yet. I am going to wait until after my heart check. I would just like my out of pocket expenses paid for which is well over 300.00 now.

Tex

[tex]

Leena,

Read Lori's (username Umber) response to Barbara's post in the thread at the following link (regarding thyroid testing):

http://www.perskyfarms.com/phpBB/viewto ... ht=thyroid

Tex

[lotus_03]

Hi Tex,

That story by Lori is alarming and really unfortunate. Good point about the TSH test not always being the best indicator of thyroid dysfunction.

I do have some good news to update. I just got labwork done with my primary this week and received the results. Blood counts, metabolic panel / electrolytes, iron panel, vitamin B12, vitamin D, and thyroid panel are in normal ranges. My thyroid panel included TSH as well as T4, so I think it's safe to say I don't have hypothyroidism, surprisingly. Though perhaps this is due to me just recently starting up iodine drops? Either way, I'll continue the drops indefinitely. I even had my TPO antibodies checked, and those are in normal range. So no Hashimoto's, thankfully.

The only out of range result was my folate level - it's quite low. Not surprising since my diet is lacking. But I just started the Desert Harvest B Complex supplement which contains 680 mcg folate (as L-5-methyltetrahydrofolate calcium), which I have been tolerating so far. Hopefully this will increase my levels over time, though I will definitely need to retest my folate level eventually (especially before having any pregnancies...).

The other "low normal" result I saw was my ferritin. Iron levels are normal, but my ferritin is 19. Normal range is 16-154 ng/mL. After some back and forth with chatgpt, I suspect that this may be for two reasons. First, it's possible I'm just not getting enough iron from my current meats, as I eat mostly turkey thighs, with about 1/3 lb ground lamb daily. Second - what I suspect is more likely - I am low on copper and vitamin C. From what I understand, vitamin C is needed for iron absorption, and copper is needed for iron transport and storage. Since I'm likely low on both, this is leading to low iron reserves. And on top of that, I suspect these low nutrients are contributing to my hair loss.

viewtopic.php?t=23816 I was reading this old discussion that talked about hair thinning causes. Now I'm wondering if my zinc:copper ratio is imbalanced and contributing to the hair loss. I'm likely getting a lot of zinc from my food, maybe around 20 mg. But my copper is maybe 0.8 mg. So not the ideal 8:1 ratio for zinc to copper.

Do you think it'd be a good idea to supplement copper? And vitamin C? I think these would be my next key nutrients to increase.

If anyone has other ideas for why I'm losing so much hair, I'm all ears. I've been sleeping a little better too since starting the iodine & b complex, so maybe that (and knowing my labs are mostly normal) will help get the stress levels down.

[tex]

It was my Free T4 not my T4 that was consistently low.

Do you think it'd be a good idea to supplement copper?

Maybe, but don't overdo it, because the zinc/copper balance has to be maintained.

And vitamin C?

Probably, if you consider yourself to be in remission. The reason that's important is because most of us react to citric acid and ascorbic acid before we are able to reach remission.

Regarding the folate, remember that over half of us have MTHFR gene mutations that cause many of us to have methylation issues, meaning that our body's ability to convert the inactive forms of the B vitamins in food and supplements into the active forms of the vitamins, may be compromised. Folate level is often the first casualty of methylation problems, and since folate is essential for the success of methylation processes, this can lead to additional problems.

Hair follicles are among the most rapidly dividing cells in the body, and they require intact DNA synthesis and methylation. Folate deficiency leads to DNA instability and compromised cell apoptosis/replacement, which can cause hair thinning or shedding. At least, those are my thoughts on the issue.

Tex

[lotus_03]

Darn, my thyroid panel only had TSH and T4. Not free T4 or free T3. Should I be trying to get another test ordered? How frustrating that the free T3/T4 aren't already included in all the panels.

With my B complex supplement, I compared it with the Thorne Methyl Guard supplement ingredients and the folate appears to be the same version. So I think it should be the active form? I'm a little confused by this. The Desert Harvest one was recommended elsewhere by Gabes on the forum but now I can't find the post. I was hoping the one I'm taking now has the activated B vitamins in case I have the methylation issues.

[tex]

Doctors typically order total T4 and total T3 tests rather than free T4 and free T3 tests because they're considered to be more accurate and reliable, especially regarding T4. I'm no endocrinologist, so l'm not sure how to advise you on that (whether or not to order another test), because having free T4 results available might or might not be helpful (and whether or not it would be helpful, might depend on your Dr., because your doctor will be the one writing the prescription if a thyroid supplement is indicated, and that will depend on how they choose to interpret those test results)).

You're correct, the Desert Harvest B vitamins are in the active forms, so you should be okay with those.

I hope this helps,

Tex