Never Ending brain fog

[scarlet37]

  This past week has been a horrifying week for me. It started out with  bad episode of hypoglycemia- which in turn brought out hyper symptoms such as brain fog and a racing heart. My primary doc decreased my levoxyl due to a slightly high T4 level.
  
   When I reported this to endo- he stated levels were fine to stay @ current of 175mcg. I said even with racing heart? Ohhhhhhhhh he said well no then please start lower dose. He stated his concern was though that last testing in april I was at 6.4 something- i reminded him at last testing in may I was @ .66............. why can't this ffice get my records straight?!!!

   Anyhow this week has been brutal on my body & brain. My body continues with the hypoglycemic episodes which leave me debilitated . My brain is soooo far gone I only have about 2 hours of clarity per day. Those days are only when I am not working and do not have to stay on a schedule. When will the brain fog lift? Should I see my primary doc again or should i see a neurologist? I'm so confused as to what to do. I just know I can't continue like this.

I attended a family picnic yesterday- but sat alone most of day because i can't stay focused on any conversation for more than a minute. I can't contribute to the conversation because i forget mid sentence my thoughts. I am truly frstrated with this. I get emotional when I see everyone smiling and laughing and talking away- I wonder if I will remeber my name in the morning?  

How long will this last?- I am desperate for my brain to recover- I wonder how long can i maintain the simpler things in life if i am only running on basic instinct?

When I wake up and know where I am I have a small bit of relief knowing today is not the day Alzheimers hits me like a 2x4. I'm hanging by a thread with my mental capacities- what should my next step be?  Is this truly thyroid related or is there something underlying?

" praying for a miracle in my life" - ( moody blues song stuck in my head)

     god bless~

          teresa

[RAI Regrets]

My levels have bounced from hypo to hyper and back since August of 06.  I started Armour in December of 06 and did start to feel better.  But, again, I have bounced between hypo and hyper as my doc adjusted my dosage.  I honestly think my level is still not right for ME and that's why the brain fog continues.  I'm going to have to change doctors -- it seems that other's doctors are much more vigilant in monitoring thyroid levels.  Thanks for you kind words.

[Venora Moonwind]

I get my levels checked every 6 weeks and I get the whole panel.i dont understand your docs reluctance to test this. How are you feeling on the armour? I take levothyroxine and cytomel. after the cytomel was added I started to feel much better and the brain fog has lifted.I still have rough days but I am now having more good days than bad.
i really havent had anyside effects from the RAI(pap cancer) although I think it had affected my teeth.
I hope you feel better soon
love Venora

[RAI Regrets]

Thanks for your feedback and support.  Do you guys have autoimmune related hypothyroidism?  My endo put me on unithroid after RAI but couldn't get a normal level (after 6 months of dosage adjustments).  My PCP changed me to Armour.  Any of you taking Armour?  What dose?  I've asked my PCP what my thyroid levels (TSH, FT4 and TT3) were before Graves hit -- and he says it's irrelevant.  Does it make sense to you guys that my pre-Graves levels would be an appropriate target level?  I've read that anyone with thyroid issues should also have adrenal function checked -- my PCP says it's not "indicated".  Have any of you had adrenal (cortisol level) function checked?  I've had ONE TSH level within the "normal" range in the past 18 months.  My PCP says that an annual test is all that's necessary now -- I'm thinking it should be checked every couple of months to make sure it remains within the normal range.  How often are your doctors checking your levels?  I'm about sick of trying to beg my doctor to do levels -- and he says it's not "indicated".  I have insurance -- I just don't understand his resistance.  And -- this is a great board.  No one seems to understand how hopeless/frustrating this is -- except those of us going through it.  I'm a professional and it's been hell trying to hide this brain fog. I used to be completely self-assured -- now I never know when I'm going to go blank in front of people.  I also ended up with gastric anti-parietal cell antibodies after RAI -- another autoimmune condition which decreases absorption of nutrients by my stomach lining.  Anyone else turn up with this "side effect"?  I have to take massive doses of B12, B6 and folic acid (10X the daily requirement).  Ugh.  Will it ever end?

[scarlet37]

  I'm sorry you're going through this and trust me I understand the neuro side!!  I cannot comment on the RAI side of things because I did not have to have this.
  I can say though that I had many neuro tests as well and nothing could be proven on any testing that it was nuero related- It did get better though after my TT.
  My endo told me that it would take approx. 3 mos. after 3 normal tests for the symptoms to slowly go away and 1 year after that for my body to heal properly. So i can relay to you that your body has been through heck and it's going to take time for proper healing. Hang in there- i know what a long ride it is.
   I now take sub lingual B12 tabs after breakfast and lunch and a B complex at night. I also take a Cq10 enzyme daily. Our bodies are robbed of important oxygen during hypo & hyper episodes and it damages our tissues all the way to our brains. So if there is a supplement I can safely take during the day to help boost this I will.
  Welcome to the board- I hope you find the answers your looking for and please don't hesitate to whine about your feelings- we certainly haver plenty of cheese to go around.

Best Wishes-

   teresa

[ChitChatNine]

I had that on a very ltd basis (word retrieval, blank out and cannot even think which word I need, etc.) and mine was directly related to being worse on higher dose of synthroid!  Now that I am off the 100 and on 88 with TSH of about 0.7 it is much better .. haven't had that happen since I dropped the meds down bcz I was experiencing anxiety.

So sorry things are rough for you still .. WELCOME to this great board`

Cheryl

[RAI Regrets]

I was diagnosed with Grave's Disease in January of 2006.  I finally gave in and got RAI in April of 2006.  In August my TSH skyrocketed to 46.  Last month - a year later - I finally am within the parameters of a "normal" TSH.  The brain fog continues and is horrifying.  I lose thoughts mid-sentence, forget names, have delayed recall and sometimes just "blank out" and can't think at all.  I went through 5 hours of neuropsych testing (the doctor thought this brain fog was my "imagination") and it proved that I have deficiencies in my mental acuity.  It's been a year now -- has anyone regained their mental acuity after having RAI?  I need some hope -- I'm so afraid that I'll never get my "old" brain back.  Has anyone tried vincopocetine for their brain fog?

RAI Regrets

[ChitChatNine]

I think it is thyroid related .....................I WAS NOT MYSELF @ 0.669 ... Before my 1/2 thyroid was removed I was at about 2.8 ...................at the hyper levels I had very very mild similar to you ... the worst was "word retrieval" and talking in a sentence and not being able to "grasp" the next word .. very scary ....it is fine until the "coverup" masquerade doesn't quite work and others fill in the blank.  Now that I am on lower than 100 every day it is improving!!!!  Also concentration and anxiety is much improved.  You may have anixety which is turning depression all from the meds!!!!!!

Keep us informed .. ok .. you know I think of you alot .. you are one of my surgery buddies OK ?????

PS .. do we ever become ourselves again .. I think so Teresa ... they just didn't tell us about this **** with the med and with me I was told the other side would "probably" work just fine .. yeah yeah yeah .. 30% of the time they don't work fine and stop working after surgery... I would have had a TT if I knew that ahead of time ....I was all for one side only bcz I was terrified of the med and ended up on it anyway.  Grrrrrrrrrrrrrrrrrrrrrr

Cheryl  (ThyCa 1/07)

[EmpatheticJenny]

Hi, Teresa--

I am sure that I speak for all of us who responded to your post when I say "You're welcome!" and when I also say, "Please do not think twice about not individualizing your thank-you." Wow, do we know what a bad case of brain fog can be like. Trying to sort out anything and keep it straight is just a lot more than a fogged-in brain can do.

I hear you clearly about the frustration of finding the sweet spot again, only to lose it. I had three weeks when I thought that my problem was all but under control. Then the high level of well-being suddenly was nowhere to be found. It is my impression that the vast majority of people DO bounce back completely, eventually, but what it takes to reach that point can be so frustrating, scary, and almost more than a person can bear.

The patience part is something I am still working on, too, and in other areas of life, I am a highly patient person. You are soooo right when you say that this thyroid stuff is soooo tricky. When we are experiencing the trickiness in a very intimate fashion, living with it around the clock, it makes patience very, very, very difficult to have. You are in my thoughts and prayers as you struggle.

Sending you e-hugs,
Jenny

[scarlet37]

Thanks all for your support- i'd indiviulize this but can't stay focdues on who wrote what.  I guess because i felt a small sweet spot a few months agoand to now go back to this again it's truly frustrating. It's 6 days on the lowered dose of 150 mcg. down from 175mcg. I think the TSH of .35 was a little too low for me. Happy to say at least the racing heart is gone.
This thyroid stuff is soooo tricky- I wonder if you really ever heal. I do know this is thyroid related because most of these symtpoms disappeared as i got tsh closer to 1 - even thogh endo told me before surgery he didn't think it was related- i was all too happy to prove them wrong.

Before surgery I had been through all kinds of tests & mri's, ct scans, lab tests, only thing abnormal was a multinodular goiter which showed several new nodules- 1 nodule with signifgant growth- i think had the path report not shown the hurthle cells I would still be searching for an answer or another doctor who would listen.

I know i'll find that sweet spot again- or find my smile again- it's just seems like I go grwat for a bit than have a set back which takes more time to heal. I have since last week really pumped up the vitamins- B complex since dana posted about anemia- I also carry b12 in my purse which i take after lunch- I take a cq10 ( helps with oxygen getting to cells?) & omega3. I'm not seeing a difference yet- but i'll be waiting and expecting a change soon.

Patience is something i have yet to accheive when it comes to my health.

thnask again all.

god bless~
   teresa

[DLA]

You said your dr's office can't get your records straight, I have been going to the same PCP for over 5 years and he still doesn't know my correct name.  I gave up years ago and just let him call me the other one.  Ridiculous, aren't they?

[DLA]

Could be thyroid related.  Has taken a long time for brain fog to alleviate for me with being normal levels.  Am wondering if maybe your levels aren't right for YOU.  We all function at different levels differently.  Just b/c 1.0 is right for some is not right for others.

Also need to have things checked like B-12, like kit said, or low sodium, potassium, magnesium.....the list goes on.  However, if you want to try the B-12 on your own you can get sublingual B-12 over the counter in the vitamin section of your store.  They dissolve under your tongue and according to all research I have done as late are considered by most drs as better than the injections.  Most notibly you cannot over dose on B-12.  If you take more than you need you just pee it out. ;)  So in no way can it hurt you.

I am truly sorry for how this is affecting you.  I also went through the same thing for many many years and have just recently found my smile again.  Have had this fake one for many years, but actually have a sense of humor again.  Hang in there and I will be praying for you.  Lean on your faith and God will help you find your road to good health, I am sure of it.

((((((((((((((((((((HUGS))))))))))))))))))))))
Dac

[EmpatheticJenny]

Hi, Teresa--

What I have learned in the last fifteen months' time is: Never underestimate how thoroughly a malfunctioning thyroid gland can mess up your mind. I think I hear you clearly. It is frustrating to be so cognitively foggy that it is an almost hopeless challenge just to hold daily life together, and it is a little frightening, too, to be that foggy.

Your fog easily could be truly thyroid-related, even if it sometimes seems like something else surely must be wrong. I do know that feeling! If you saw a neurologist, I have a hunch that he or she would only send you right back to the world of endocrinology.

What you probably need most is an endocrinologist with whom you can have an excellent relationship. I cannot tell for sure from your comments, but it does not sound as if the person you are seeing fits my description. I hope that you have a choice about looking for a better doc, if you are not thrilled with your current one.

As for how long it takes for the fog to clear: I think it varies from person to person. It also can be an up-and-down process for a person, as it has been for me. I am feeling much, much clearer cognitively than I did during the worst of my hypothyroidism times a few months ago. Still, there are days when I can tell that a little fog is lingering. I have posted several comments at the forum today. I re-read one of them and wondered why I had not re-read it, and proofread it, before posting it, not after posting it. Another comment needed to be broken into rational paragraphs, which it did not occur to me to do until it was too late. I recognize these failures-to-think as coming from a struggling thyroid gland whose problems are not quite under control.

Having an endocrinologist who works hard to be helpful, who takes me seriously, and who communicates a spirit of supportiveness in subtle ways has made an enormous difference as I have limped through my own lengthy "I can't continue like this" time. Rather than looking for other forms of help, the best next step for you to take might be either to have a conversation with your current endo and get him to offer some answers to the "What should I do?" question or else start looking for another endo.

It is SO difficult to figure out a best next step to take when your head is filled with fog, I know. Any of us in that situation needs to have an endocrinologist who will take up some of the slack and help us think through the possible answers to the question, "Where do I go from here?"

Wishes you all the best,
Jenny

[kitcurious]

My husband had a deficiency in b12 and couldn't remember anything. He had injections of B12. Have you had a general check-up with bloodwork/testing for various other conditions yet?
May not be the thyroid.