brain fog going on 8 years, doctors have nothing to say

[Chadwick]

Hey guys,

I'm new to the forums, but a few threads struck me in a way no other place on this internet has, and I feel this is my best crack at figuring out my ongoing problem.

One day about 8 or 9 years ago, some door closed in my brain and I experienced a cloud/fog ever since. I've been on an endless hunt ever since, testing for thyroid, brain MRI and EEG, sleep study, all of the basic blood tests, testosterone, (basic) adrenals, (basic) lyme, and a slew of other things, all to no avail.

They told me I just have anxiety, but I know that I'm anxious BECAUSE I don't know if this will ever end! They also found a large benign thyroid nodule, which they said have nothing to do with the fog but want me to take out because of its size… but I am scared to death that my problems will increase exponentially with half of a thyroid working twice as hard.

I think alcohol might contribute, and I honestly feel like I never fully recovered from even the very first time I ever got drunk… but I stopped drinking for 2 years and nothing changed. I've tried gluten free for 6 months too… nothing. I had low vitamin D but brought it within the normal range, still nothing. B12 normal.

I'm at my wits end here. What can I do?!?

 

[sarah darwins]

Welcome, Chadwick.

Do you have other symptoms besides brain fog? What's your overall activity level like? Do you experience illness or other problems after exercise? Are you able to work?

And which part of the world are you in?

 

[Snowdrop]

Hi @Chadwick

Welcome to PR.
I'm not an expert on this but I think I've read that measuring the blood level of B12 isn't really a good indication of your B12 status. B12 needs to be in your cells so if you have enough floating around in the blood that doesn't mean it's getting used properly.

I'm also a little skeptical about normal ranges too though. Is there good science behind how they determine the range?
Often labs disagree. I'd go with trying a few things that you suspect might work in an organised way noting the results. Vitamin D3 was a good start. Also sometimes it's a combination of things that need to be used together to get a result.

 

[drob31]

Get a second... third... opinion, or whatever it takes on your thyroid and adrenals (hpa-axis). Low cortisol or thyroid hormone will cause the brain fog you're describing. I notice it whenever I play around too much with my cortisol levels or my thyroid. How does your free t3 look? Have you done a salivary cortisol (4x test)? Often peoples cortisol levels are variable. One 4x cortisol or morning serum test may look okay, but it doesn't really capture the big picture. HPA-axis dysfunction will cause those symptoms. Anxiety is a big red flag for adrenal related issues as well.

Just a shot in the dark, have you ever supplemented with pregnenolone?

 

[Ema]

There's a lot on brain fog in this book:

http://brainhealthbook.com/datis-kharrazian/

Also you might look at supplements that reduce ammonia levels like lysine or yucca. There are several threads if you search the forum on reducing ammonia.

 

[Chadwick]

Thank you all for the prompt replies! This is very welcoming. Going down the list:

Sarah, the other symptoms I have are:
scoliosis, which makes me wonder if there's some spinal imbalance or complication that could affect my brain; borderline low ceruloplasmin, which made the doctor test for urine copper for Wilson's Disease, which came back normal… never tested for KF rings;
chronic sinusitis and a maxillary cyst that the doc thinks isn't a big deal;
thyroid nodule thats 4.5 cm on the largest dimension, labs normal otherwise;
chronic constipation and/or hemorrhoids, no diagnosis of IBS;
ED, possible mild urine retention, which makes doc think there could be a neurological cause;
fatigue, particularly after rigorous exercise.
hand tremors,
trouble remembering things, finding the right words, losing train of thought and otherwise a brain that's generally in "screen saver mode" that feels detached from the rest of my body. With intense exercise my body can light up in energy but my brain feels the same!

My activity level is pretty low, except for trying to do more exercise lately although I have to be sure not to overdo it. My work schedule is irregular meaning my sleep schedule can get irregular too. I can get through work although I know the quality is affected, and also I usually need a ton of caffeine just to make it through I live in California.

Snowdrop, there was ONE day that the brain fog cleared for about twenty minutes, then it came back. I have no idea what I was doing other than trying a few herbal teas with (Skullcap and Wood Betony) as well as trying Rhodiola. I've been trying every combination of that since with no results. That's frustrating to hear about B12, because I've heard that about so many other labs too-- what gives?!? I've heard that about adrenal test, thyroid tests, Wilson's tests, and Lyme. I simply don't have thousands of dollars and months to put aside to go through it all thoroughly, so I'm forced to pick my battles! For what it's worth, the B12 serum was in the upper range. Interestingly I seem to actually get MORE tired when I take a B complex…

drob31, I'm going to see if I can get all the thyroid stuff tested again, because I think it was tested before the nodule even emerged. Free T3 was 3.3 (2.0-4.4) but Free T4 was 0.99 (0.82-1.77). I think the adrenal test I took was blood only. Are there any particular ones I should really push for? By the way, I've heard the name pregnenolone several times in the last week… maybe that's a sign I should really try it out! Any superior brands in particular for brain fog?

Ema, thanks for the link! I had never heard of reducing ammonia… I will look into that ASAP!

 

[Ema]

Any superior brands in particular for brain fog?

Pregnenolone needs to be lipid matrix or micronized and sustained release.

 

[Chadwick]

Thanks… I'll see what's available!

Just checked the adrenal test I did… DHEA sulfate, 320 range 85-690.

 

[drob31]

Thank you all for the prompt replies! This is very welcoming. Going down the list:

Sarah, the other symptoms I have are:
scoliosis, which makes me wonder if there's some spinal imbalance or complication that could affect my brain; borderline low ceruloplasmin, which made the doctor test for urine copper for Wilson's Disease, which came back normal… never tested for KF rings;
chronic sinusitis and a maxillary cyst that the doc thinks isn't a big deal;
thyroid nodule thats 4.5 cm on the largest dimension, labs normal otherwise;
chronic constipation and/or hemorrhoids, no diagnosis of IBS;
ED, possible mild urine retention, which makes doc think there could be a neurological cause;
fatigue, particularly after rigorous exercise.
hand tremors,
trouble remembering things, finding the right words, losing train of thought and otherwise a brain that's generally in "screen saver mode" that feels detached from the rest of my body. With intense exercise my body can light up in energy but my brain feels the same!

My activity level is pretty low, except for trying to do more exercise lately although I have to be sure not to overdo it. My work schedule is irregular meaning my sleep schedule can get irregular too. I can get through work although I know the quality is affected, and also I usually need a ton of caffeine just to make it through I live in California.

Snowdrop, there was ONE day that the brain fog cleared for about twenty minutes, then it came back. I have no idea what I was doing other than trying a few herbal teas with (Skullcap and Wood Betony) as well as trying Rhodiola. I've been trying every combination of that since with no results. That's frustrating to hear about B12, because I've heard that about so many other labs too-- what gives?!? I've heard that about adrenal test, thyroid tests, Wilson's tests, and Lyme. I simply don't have thousands of dollars and months to put aside to go through it all thoroughly, so I'm forced to pick my battles! For what it's worth, the B12 serum was in the upper range. Interestingly I seem to actually get MORE tired when I take a B complex…

drob31, I'm going to see if I can get all the thyroid stuff tested again, because I think it was tested before the nodule even emerged. Free T3 was 3.3 (2.0-4.4) but Free T4 was 0.99 (0.82-1.77). I think the adrenal test I took was blood only. Are there any particular ones I should really push for? By the way, I've heard the name pregnenolone several times in the last week… maybe that's a sign I should really try it out! Any superior brands in particular for brain fog?

Ema, thanks for the link! I had never heard of reducing ammonia… I will look into that ASAP!

http://www.amazon.com/Life-Extensio...pebp=1437444779826&perid=09JVKSV8GRB20XVWB2M3

I started with 50 mg/day in morning on empty stomach then worked my way up to 100 mg which is in the link above.

In regards to ammonia, mine tested normal.


Another thing to keep in mind about free t3, is that it can "pool" in your blood. You may appear to have "normal" levels, but it may just be pooling because it's not able to be accessed by the cells. So essentially you may have low t3, but over time, because you have lower cortisol levels (hypothetically), which is needed for cellular thyroid hormone uptake, you're t3 pools and gives you a false high reading. Labs you can add to your thyroid antibodies, rt3, and t3 uptake in addition to free t3/t4, tsh.

Your thyroid nodule is the most important clue in my opinion. Hypothyroidism can cause over 300 symptoms as it effects every organ system in the body. I've had urination issues as well, and at one point nocturia.

I would also get your serum iodine levels checked. Low iodine can lead to goiters and hypothyroidism. Hypothyroidism can affect the hpa-axis on its own.

 

[drob31]

Thanks… I'll see what's available!

Just checked the adrenal test I did… DHEA sulfate, 320 range 85-690.

What were you cortisol levels? Keep in mind, multiple tests are needed so an "average"' can be created. Also free cortisol from a morning test would give you more clues.

 

[Chadwick]

http://www.amazon.com/Life-Extensio...pebp=1437444779826&perid=09JVKSV8GRB20XVWB2M3

I started with 50 mg/day in morning on empty stomach then worked my way up to 100 mg which is in the link above.

In regards to ammonia, mine tested normal.


Another thing to keep in mind about free t3, is that it can "pool" in your blood. You may appear to have "normal" levels, but it may just be pooling because it's not able to be accessed by the cells. So essentially you may have low t3, but over time, because you have lower cortisol levels (hypothetically), which is needed for cellular thyroid hormone uptake, you're t3 pools and gives you a false high reading. Labs you can add to your thyroid antibodies, rt3, and t3 uptake in addition to free t3/t4, tsh.

Your thyroid nodule is the most important clue in my opinion. Hypothyroidism can cause over 300 symptoms as it effects every organ system in the body. I've had urination issues as well, and at one point nocturia.

I would also get your serum iodine levels checked. Low iodine can lead to goiters and hypothyroidism. Hypothyroidism can affect the hpa-axis on its own.

Thanks for the info. I've read some horror stories online about doses that high, but I trust anecdotal evidence over preemptive caution…

I will see if I can retest everything as well as add rt3 and t3 uptake. I tested negative for antibodies (or below range anyways). Thyroglobulin was astronomically high, but they said that was because of the nodule. I've asked 3 endocrinologists to test my iodine and they all basically laughed and said it's impossible for me to be low in iodine… ughh!!

I had read that if I WERE to get an iodine test I should do the loading one instead of serum.. thoughts?

 

[Chadwick]

What were you cortisol levels? Keep in mind, multiple tests are needed so an "average"' can be created. Also free cortisol from a morning test would give you more clues.

Cortisol was 17.5 ug% taken in the morning. Doc said that was normal?

 

[Hip]

They told me I just have anxiety, but I know that I'm anxious BECAUSE I don't know if this will ever end!

Unlikely that's the reason for your anxiety. You may want to consider that your anxiety is caused by biochemical aberrations in the brain. And you might want to consider treating it.

 

[Chadwick]

Cortisol was 17.5 ug% taken in the morning. Doc said that was normal?

Wait, this was done at a totally different time, so I guess it makes the correlation invalid…sorry!

 

[Chadwick]

Unlikely that's the reason for your anxiety. You may want to consider that your anxiety is caused by biochemical aberrations in the brain. And you might want to consider treating it.

Thanks for the feedback. I did try 3 separate psychiatrists to deal with the problem. Every medication they threw at me just made the fog worse. At one point I was so spaced out I could barely even have a conversation! Of course, there's the chance that maybe I never found the right medication, but that can become a (pricey) rabbit hole. Also, that still doesn't quite explain the other symptoms...

 

[Hip]

Every medication they threw at me just made the fog worse. At one point I was so spaced out I could barely even have a conversation!

If your anxiety levels are high and problematic, and you would like to treat the anxiety, this thread might be of interest to you:

Completely eliminated my severe anxiety symptoms with three supplements!

 

[Chadwick]

If your anxiety levels are high and problematic, and you would like to treat the anxiety, this thread might be of interest to you:

Completely eliminated my severe anxiety symptoms with three supplements!

awesome THANK YOU!! Will be studying this tonight.

I've tried curcumin before but not turmeric specifically… I noticed you had the two listed separately, so you found the other ingredients in turmeric to be particularly helpful? I had also tried a few others on the list, but not long or consistent enough to really feel any effects. Will try this going down the top of the list.

At risk of asking something that was already mentioned in the 29-page thread, was it the combination specifically that got rid of your anxiety, or will they all work independently as well? I ask because when testing them out I would know how each affects me much better if I tried one at a time.

Lastly, one fear I have is that some people express anxiety through elevated energy and the mind racing… Since whatever I have slows me down, things like meditation or acupuncture that ought to relieve anxiety tend to just space me out even more. Will this stuff work on that low-energy-presenting anxiety?

 

[sarah darwins]

@Chadwick — I'm out of my depth with the biochem stuff so I'll bow out. But you've got some of the smartest people in the room on your case now and lots of ideas to get to work on.

I've been coming here for about 6 months and, I can promise you, it's an education!

Good luck. Be well

 

[drob31]

Chadwick, you may also want to find a new doctor you can work with. Someone who is "outside of the system." Unfortunately this means paying out of pocket in many cases. I would suggest looking for a integrative/holistic/and or naturopath doctor.

Sometimes we do things or have habits that contribute to our brain fog. Maybe it's mold in a place you live in? I know one of the most important things for restoring your hpa-axis function is normalizing circadian rhythm. Unfortunately this basically means going to bed at 10-11 every night, and then sleeping as long as you need to, until about 7-9 AM.

 

[Hip]

awesome THANK YOU!! Will be studying this tonight.

I've tried curcumin before but not turmeric specifically… I noticed you had the two listed separately, so you found the other ingredients in turmeric to be particularly helpful? I had also tried a few others on the list, but not long or consistent enough to really feel any effects. Will try this going down the top of the list.

At risk of asking something that was already mentioned in the 29-page thread, was it the combination specifically that got rid of your anxiety, or will they all work independently as well? I ask because when testing them out I would know how each affects me much better if I tried one at a time.

Lastly, one fear I have is that some people express anxiety through elevated energy and the mind racing… Since whatever I have slows me down, things like meditation or acupuncture that ought to relieve anxiety tend to just space me out even more. Will this stuff work on that low-energy-presenting anxiety?

I found the supplements all work individually; they don't have to be taken in a specific combination to work. NAG is the star supplement in the list, which I found to be more powerful than any other single supplement. Because my anxiety was severe, I found no one individual supplement was potent enough to fully counter my high anxiety; to fully eliminate anxiety, you need to take a few supplements in combination. Each supplement does its bit, and the additive result is that you can often eliminate anxiety entirely, or at least greatly reduce anxiety levels.

I found the three supplements NAG, turmeric and flaxseed oil are sufficient to pretty much eliminate my anxiety; however, occasionally I get bad days when anxiety levels peak higher than normal, and on those days, even these three supplements are not quite able to fully banish anxiety.

So on such bad days, all I do is just add a few more of the anti-anxiety supplements in my list to my regime for that day, and that then works to eliminate the elevated anxiety. The more supplements you add, the more you counter anxiety.

It is a good idea to test these supplements individually as well, because that way, as you point out, you get to know their individual effects.


I have ME/CFS as well as generalized anxiety disorder, so my anxiety is also expressed in the context of low energy levels. My mind does not race that much from anxiety; anxiety just creates a horrendous internal mental tension.