Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Duckski44,
I explored the Lyme option early on.
When I first felt these symptoms, I had reason to believe it was Lyme, since I was very active in outdoor sports.
All tests seemed to come out negative, plus I never got the severe joint pain that Lyme patients experience. Joints don't seem to bother me much.
I even met a Lyme literate doctor that prescribed tons of antibiotics in hopes that, if it was a non-diagnosed case of Lyme, it would kill the bug.
Between 1998 and 2002 I took heavy doses of antibiotics, in 4 month intervals (Ceftin, Amoxycilin, Cipro, doxy, you name it). It didn't quite make a difference at all. Here we are 12 years later, and the same symptoms are on.
One of my doctors even inoculated me with Lymerix (early vaccine for Lyme disease) in the year 2000, after I begged them to try, just to see if it would make a difference. It didn't.
Now the problem is that since I was given that early Lyme disease vaccine, if they perform a blood test now, they'll see antibodies for Lyme. All tests prior to that one came out negative for Lyme.
Last edited by Julius2009; 11-06-2009 at 09:37 AM.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Julius, what I had to do was pay out of pocket for the bloodwork, I had a ton of it done and it cost $2000, but a lot of labs give you a 50% discount if you pay cash on the day. I would most definately have those tests done that Jav posted, they'll check your antibodies, adrenals and thyroid... would also get a reverse T3 test too. All my results always come back within normal range except my cortisol and vitamin levels.
Good luck, keep us posted.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Quote:
Originally Posted by Aahhh Problems
...a lot of labs give you a 50% discount if you pay cash on the day.
Wow, that sounds very interesting. I've been looking at some of the online labs that other folks have suggested. The prices sure are outrageous. If you don't mind, maybe you can point to me how to do this (you can email me directly).
Can you just walk to a lab and request your tests, or you have to go through the online testing website and order the tests first?
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
I had almost the exact same situation. I even had a sinus infection for a year which resulted in surgery. Still ended up with a sinus infection after surgery. I kept telling the doctors that it felt like everything was swollen in my nose and ears. I had all the brain fog, exhaustion, weight gain. I started having vision problems, joint pain and sometimes had no control over my balance. I got tested for everything under the sun and everything came back normal. It got to the point that when I would leave for yet another doctor's appointment, my co-workers would say, "Good luck--I hope your tests don't come back normal!". After three years of this, I asked for copies of everything and started looking up all my test results that were near the high or low end of normal. My TSH was 4.44 and the top of the normal limit was 4.5--eureka! I got myself to an awesome endocrinologist and he told me within the first 3 minutes that I might have a problem with my thryoid and that even though my result was in the normal range it wasn't normal for a 42 year old woman. After taking Synthroid for a few months, I got on Armour and all my symptoms went away. It's been a year and a half and I haven't had one sinus infection. I lost 20 pounds doing nothing different. It's amazing--until I got sick, I had no idea how important your thyroid was! Now I feel perfectly normal and it's almost hard to believe that I was as sick as was.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Julius, I found a doctor who requested the full lab work, he's a private doctor, so I'm a paying customer so to speak. I'm sure you can request your needed blood tests should you pay for them. I'm not entirely sure how it works without a doctor. You can always call and ask your doctor will he do it if you pay yourself, or even call the lab or local clinic.
Somewhere on here is a complete list of the blood tests I had done, it can be expensive, but it's truly worth every cent.
I went back and found the list, here it is.
http://www.healthboards.com/boards/showthread.php?t=718514
Last edited by Aahhh Problems; 11-08-2009 at 12:00 PM.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
i have the symptoms you mentioned in your first post too. i am hypo thyroid.....i see a natural path md doctor who orders all the required blood work i need. all that is covered by my insurance i usually only have to pay about 300 and i know the bloodwork cost about1500 to 2000...bc the lab ladies are always like...she sure did order a large panel. my doctor does not take insurance i hve to submit that myself but the good news is the bloodwork is covered by my insurance...find a doctor who will run a panel on all that javelina posted....these symptoms will not go away without medication. and you are taxing your adrenals without the proper care. one explanation to your feeling good in one place and horrible in another is...stress. i know that i was sumbfounded when this happened to me the week i went to the beach..thursday was the best day of all- no syptoms at all...it was the craziest thing..i have been sick for 4 years..day in and day out.. i told my husband it was such a stress free week and the sea salt in the water probably gave my adrenals what they needed. back to the grind the next week and i felt hypo all over again. stress plays a huge part in this...you also may be sensitive to something environmental in ny . but it does sound that you are hypo to me.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Quote:
Originally Posted by Julius2009
I really don't know what it is, but from all the descriptions I've read, the one that approximates my symptoms the closest is a Hypothyroid condition, but it doesn't quite explain the severe sinus congestions. Either the sinus/allergies are part of this whole syndrome, or they are a red herring that's not related and throwing me into a spin.
Of all the symptoms from this nightmare, the ones that disturb me the most are the neurological ones: brain fog, memory loss, mental sluggishness. It's truly horrible. Pain I can deal with, but this cognitive dysfunction is something I was not prepared to face. When it is at its worst, I can't even form complete sentences, or confuse words for no reason. For instance, last week I said several times "March" when I was convinced I was saying "November". This was in a business meeting. People thought I was either drunk or mental.
Another disturbing effect is forgetting the topic of a conversation... in the middle of a conversation. In mid-sentence I forget what I was talking about, and I'm left there, stumbling to figure out what to say next.
Memory is the worst, though. Short term memory is gone for good. I have completely lost it. Long term memory fades one and off. I can remember the silliest things, but forget names of relatives, of places I've lived, or things I've done, movies I've seen, books I've read, people I've known. It's torture. It's pure torture, and I don't know what I need to be normal again.
I look forward my trips though, because I know when I visit California o Spain, I'm normal (or as close to it as I can get) for a few days. During those days I'm lucid. I catch up with important things in my life. I suddenly can read without struggling, and finish several books in no time. I write again, and things make sense. The fog disappears, and then I'm whole. Most importantly, in those small windows of time when I'm lucid, I put together long lists of important "TO DOs", lists of things I really need to do, but that the brain-fog and memory issues make me forget.
Then, when I come back to New York, I'm able to get to a few of those items in the list... until the brain fog sets in, and then I live a day for a day, trying to catch up at work, hiding my illness from my coworkers the best I can. Deep in the sluggishness and lethargy... This is no way to live, frankly. As I said in a previous post, I feel like I lost the last 10 years of my life to this thing... whatever the heck it is.
I have all of the above. That is funny, when I suffered Hypo for 4 years in Jersey I was fine. Had an endo, no side affects at all. Moved to Florida 4 years ago now and I have all those side affects you have, along with a constant aching brain headache that feels wierd. It makes me dizzy also. This is horrible. It almost makes me not able to function. I sleep at midnight and am beat tired but wakeup all the time at 5am and then have a probel going back to sleep. I wish I could explain it all. My son and everyone think I have alzheimers, that is how bad it is sometimes. I am talking and cannot remember the person name of the subject.....terrible. Is this all hypohell?
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
julius, i will tell you that when i went ot my doctor a nd told her my symptoms that she wanted me to run an alcat test allergy test on me. when i went autoimmune, all i understand is that my body attacked itself..and did not recognize even the healthy stuff that i was eating and it would make me feel very bad. my symptoms were different but you can have a multitude of different symptoms and so , yes you can have allergies. my panel was about 400 and it tested for everyday foods and molds, and pharmacuetical agents.. you should get an allergy test done and then i recommend you stay away from those things ... she said after 7 months i could try to reintroduce it to my system...but i have stayed away from pastries and all the yummy stuff. since i struggle with my weight and never have in the past i am careful what i put in...plus my bromide toxicity was pretty high and so i am careful about the bleached flour and just don't let it enter my mouth. there are supplements i have been taking for about 2 years that help digestion and i don't think i have developed any new sensitivities...something you should look into. also, my doctor has me doing the sea saltwater up the nose and you would be surprised morning and night how beneficial that is. especially if you do it regularly. jsut sharing my experience
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
I have every symptom that you exhibit except for the scalp. I do have severly dry skin and will get welts if I do not manage it. I have been through so many tests and allergy tests. I did result in severe allergy symptoms, but I almost died three times from the allergy shots. There are no medications that manage the symptoms for me and I am at a loss. I really empathize with your plight and hope you can find an answer. I also thought it was really weird that u wanted to pursue your education because that is exactly what im doing now. FYI i am doing well in spite of the persistent foggyness. good luck.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Hello... I have some of the same symptoms as you. I was curious if the noises you heard from your inner ear were actually coming from your jaw. have you pursued a TMJ dysfunction? I understand that would not cover every symptom, but it would most. do you grind/clench your teeth often? just a thought as i am going down a similar path as you have. I started to steer more in the direction of a jaw/muscular disorder when on top of my regular symptoms i started having neck/shoulder/upper back stiffness/soreness. Good luck with your pursuit... I know how tiring and defeating it can be.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Quote:
Originally Posted by aaaaaaaaaaaah
move to a location where you feel better, why suffer?
I heard this before from doctors. I thought about it myself.
In reality, it's way easier said than done. My life is here in NYC. My career and most people I know are here in NYC. At my age (40) it would not be realistic to move to a different location and start over. Not realistic, much less in the middle of a recession.
I wish I could just move to a dryer, nicer location where my awful symptoms go away. It's not an option. I wish I had options like very wealthy people do. Unfortunately I don't.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Quote:
Originally Posted by Julius2009
I also wanted to list a few additional symptoms I forgot to mention in my previous post:
...
Hope this provides more insight on my affliction.
Here's a few extra symptoms I've noticed over the years, but neglected (or rather forgot) to add:
Extremely slow breathing at night, like I'm breathing 4 times per minute, very slowly. I notice when I wake up that I have to breath deeply, since it feels like my entire metabolism has been in hibernation. It goes together with a very, very slow heartbeat when I sleep.
Severely decreased libido.
Frequent urination (but it comes and goes).
Constant low-level sore throat, all year round.
Frequent choking. It happens several times a month. Out of the blue I would choke, sometimes drinking, sometimes eating, and sometimes just for no reason or swallowing my own saliva. It's bizarre and very scary when it happens. This never happened before in my life until all these symptoms took place. The ORL doctors said there's some minor irritation, but nothing worrisome.
I have checked my neck and looked to see if there are any lumps, but I can't feel anything out of the ordinary.
Last edited by Julius2009; 11-23-2009 at 09:19 PM.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
An ultrasound of your thyroid wouldn't be a bad idea if you haven't already had one done. I get the choking myself, sometimes I aspirate my own saliva, which is bizarre and scary when it happens. I also have thyroid pain when I'm very hypo. The other symptoms are pretty classic slowed metabolism signs of hypoT. Have you had any labs done? Any luck finding a good doc?
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Hi,
I am writing this post because I feel exactly like Julius2009 and it is hard to be like this. I have all these symptoms for 5 years now. In the beginning I couldn't understand what was going on. I was telling my story and none was believing me including a few doctors. I went to neurologist, nothing. I went to special doctors and they didn't see any problem. I did 3D Scan, nothing important there. I have headaches or pain from sinus and feel block deep inside my nose. My nose is dry. I have sometimes PND. Since this started I feel tired every day, have bad memory, I cant consecrate and like Julius2009 when I talk sometime I forgot what I wanted to say! I don't have sense of my self, my feelings, I think that I don't feel the like before, it is difficult to describe this, I don't enjoy whatever I am doing even things that I used to like a lot. I have done also the allergies test, negative. I have terrible pain in my sinus when I travel by plane, my skin is very dry, my scalp, also my eyes too and they are swollen, my ophthalmologist can't understand why. I have consistently sore throat. When I use neti pot the water inside my sinuses cause Swelling on the bridge of my nose, the same happen with sea water. I have done thyroid exams and they are in the normal limits. I have take antibiotics, sometimes they easy the symptoms, steroid sprays, steroid pills, the make me feel better until I stop them. My mother have same symptoms for many years. I believe that sinusitis is secondary problem not the main. I feel like I have lost the last five years of my life, I almost have forgotten how I was before..Does someone with these symptoms become well again?
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Quote:
Does someone with these symptoms become well again?
Platonis, the answer is yes but getting to the bottom of the diagnosis can be very difficult for many. Those of us who do not fit squarely into the usual diagnostic critera can have a very hard time of it.
Since this is another's post, why not relate your story on your own post and others can comment and share what's worked for them.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
Finally got some interesting answers after getting different tests from two different specialists. I will report more info soon, but apparently I am getting a one-two punch from two different conditions, a perfect storm.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
OK, here is the brake through that you have been looking for...I hope. One person mentioned getting your thyroid levels checked and specifically mentioned T4 and T3. I was waiting for that person to mention getting your Reverse T3 checked as well. My thought is that you will find your T3 and T4 in the low but normal range, but your RT3 is going to be way too high. This is slightly controversial so you have to think outside the box. High RT3 causes a condition known as non thyroid disease, or Euthyroid Sick Syndrome. T3 and RT3 have the same moleculer make up, except that too much RT3 blocks the receptors and takes the place of the real T3. This conditions mimics to a "T" a throid disorder, even though the T3 and T4 are in acceptable levels. The solution is to go on slow release T3 or Cyclomel synthetic T3 to drive the RT3 down to a lower level. Finding out what your RT3 is a common lab corp blood test. They don't normally test the RT3 because they are !@#%@!! Think about it, after this many years, what do you have to loose.
Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss
OK, so let me make a long story short. I still don't know for sure what's causing my problems, but I believe I'm closer to know. Allow me to simplify a complex story:
- Met with two specialists, a highly recommended and very expensive Thyroid specialist in NYC, and an Inner Ear NeuroOtology specialist at NYEE Infirmary.
- The Thyroid doctor did a very extensive study with a detailed battery of blood tests. He mentioned my symptoms are consistent with a thyroid deficiency, but the blood tests showed normal levels for thyroid function. Nevertheless, the Testosterone levels came out very low for someone my age. That would explain the low energy and some of the lethargy. Apparently I have low-T like a man 20 years my senior.
The doctor prescribed me Androgel, and wanted me to try Cytomel (5 MCG) and Synthroid (50 MCG). I took Cytomel for a week, and I felt an instant jolt of energy. Then I added the Synthroid 50 MCG and things became very scary. I mean, very scary. I had to stop taking it after 3 days. Not sure if it was the Synthroid alone, or a combination of both, but it was terrifying: palpitations, nervousness, hair falling off by the handful, in patches, couldn't sleep for three straight days. I mean 3 full nights with not a minute of sleep. I thought I was going to kill over. Very scary. Synthroid is not for me, definitely.
The doctor suggested I stop taking them right away, and try again in a few weeks to see if there's a difference.
Two weeks after the experience, the palpitations have decreased, but my hair keeps falling off in clumps, like a victim of radiation exposure. I wonder when will it stop. Does anyone know when your body flushes out the Synthroid for good? This was a bad experience.
In addition, these drugs did nothing for my cognitive problems. They improved energy levels, but not attention or concentration.
(TO BE CONTINUED)
Last edited by Julius2009; 12-30-2009 at 05:59 AM.
