Memory Concentration Sleepiness

[turtlekeeper]

Hi all, I'm new to this forum but I've been desperate to find others out there to talk to who are in a similar situation as I am.  Here is a brief history:  pregnancy, delivery, diagnosis of Grave's 5 months postpartum, treatment with antithyroid meds, radioablation, supplementation with thryroxine (Synthroid).

Ever since I've been on the Synthroid, my levels all test normal.  The doctors are happy.  Me- not so much.  Here are my symptoms:  heavy periods, migraines, general fatigue (always sleepy), lack of concentration, poor short term memory, lack of sex drive, lack of motivation.  I told my specialist about these a few times over the last year and he said nothing!  On the last visit, he decided to put me on T3 supplementation and drop the Synthroid a little (was on 88mcg now on 75mcg alongside the Cytomel).

I am wondering how this will be.  I am so tired of the mental problems.  I can't talk properly- I have to think about what to say and what words to use.  My memory sucks.  I go into a room to fetch something but forget along the way.  IS there anyone out there who knows about this??

Help!

[gimel]

Please post your thyroid related test results and their reference ranges shown on the lab report, so that members can comment on the adequacy of your testing and treatment.

[rhonamadge]

I have hashimotos for 30 years, and i am totally baffled by the lack of help and knowledge .
I cannot concentrate on anything for more than about 15 minutes before i start to fall asleep.
Its really affecting my life now.Any lectures/talks -i'm lost after 15 mins.I have no energy and its affecting my performance at work. My thyroid tests usually come back as normal.
Are we entitled to any disability help/benefits?

[turtlekeeper]

Wow- you're certainly supermom.  I have NO IDEA how you did that for 1.5 years.  The pounding heart and racing pulse got to me after 5 months.  I couldn't even lift my 5 month old daughter my arms were so weak.  I remember trying to make her bed and I couldn't lift the mattress.  Boy was I surprised a few months after RAI the first few times I made her bed.  It was amazing.  But then going hypo has not been fun.

[GravesLady]

When I am hypo I am more depressed and lethargic.
After RAI, getting on meds. and while waiting for the meds. to get my TSH level from 29 to within Labs reference range, is when I had the brain fog.  

Hyper is another whole brain issue. Everything goes a mile a minute, even the brain.
The way the brain can cope with it, is by turning off.

For me anyway.

[DLA]

Was diagnosed with Graves' after over 1 1/2 yrs of being sick.  Finally had to find another dr b/c I was having very bad chest pains and could not hardly even walk any more.  Took absolutely everything I had just to take a shower.  Had to really rest before hand and afterwards.  Had resting heart rate of about 115 and resting bp of 240/114!  One dr told me I should have already had heart attack or stroke.  Not knowing what was going on had thyroid storms that would drop me to my knees on almost daily basis until I got too tired to move.  And all this with baby!  Poor kid, it's a wonder he's normal.

Then after RAI bounced around from endo to endo trying to find one that would listen to me when I said I was still sick.  None of them would so went back to my PCP and had him treat me for it.  So for those 4 years my dr was keeping my TSH at 5.56 as best he could.  Felt like cr@p.  Then they took me off of it all together to run tests so spent another year with TSHs of 40 or so.  Am now with new endo and TSH of .93.  

Now on battle to try and restore organ functions to normal after all the damage the levels being off has done.  

Ask a simple question, I write a novel.  Sorry.  Shoulda said, t'weren't easy!
Dac

ps--not 100% sure but most medical stuff is in metric.  Kinda like mcg.  So don't think there would be any difference.  Can't remember exactly what the "units" are called they're measured in, but would bet they're universally metric.

[turtlekeeper]

How did you last 71/2 years with your levels being off?  The first 5 months I was hyper with Grave's I didn't know it because I had a newborn.  I thought I was just hot and tired from running around, not sleeping and nursing.  The pounding heart finally made me seek help.  I didn't really notice the brain fog then because I think I was so preoccupied with my daughter and everyone telling me it was "mommy brain".  It because much more apparent after my RAI.  

I am very curious about my levels now since the last set were in June.  I just realized that I think I'm reporting my numbers in Metric (I'm in Canada) and everyone else's numbers are not.

Kudos on the reading and studying.  I'm just hoping when I get back to work, I won't be looking too stupid (i've been off for 3 years).

[DLA]

I had Graves and can guarantee the brain fog was much worse for me when I was severely hyper.  It stayed when hypo and now I just seem to be in kind of a permanent fog.  Actually, now that my levels are good the brain fog is getting better, but 7 1/2 yrs of thyroid levels being off have caused what almost feels to me like brain damage.  Use to know so much more than what I do now.  Think it was my memory banks being wiped out for so long.  So am now working on getting that brain function back.  It's actually working pretty well.

I'm reading and studying a lot of things that I have interest in again.  Used to be an avid reader and am trying to get back into that.  Have also started playing Mahjong.  Seems to really be improving my memory and alertness to things.  So there is hope at the end of the tunnel.

Dac

[turtlekeeper]

So has everyone noticed the same brain fog whether hyper or hypo?  I feel hypo.  But my last set of scores were FT4 22 and TSH 0.06.  That would indicate I am hyper.  This is really confusing.  I guess it's time for another blood test.

[DLA]

If it goes really low then you will be hyper again.  I talk out loud all the time so that my son or one of the kids hears what I'm doing so if I walk into a room and forget what I've gone in there for I ask and they know.  But... now that school's started I'm on my own.  Was outside working Friday morning and would get side tracked and forget what I was doing.  Don't know exactly how long I let the water run.  Oh, that was what I was suppose to be doing.  Don't know how much of it is brain fog and how much of it is ADD.  Guess I'm going to have to go back to writing notes.

Funny note here.  My husband comes home sometimes at night with his hands written all over.  Some of the things will be marked through and the ones that aren't he has to write on a piece of paper and try to remember it the next day.  If you ask why he writes his to-do's on his hands he says he can't lose them.  lol

Dac

[turtlekeeper]

Yes, I have that walking-into-a-room-forgetting-why-I-am-there problem.  It's insane.  It is so frustrating.

We talk about getting TSH down to about 1.  What is the case when TSH is really really low?

[GravesLady]

Have the FT-3 done with the other two to verify that you don't have a conversion problem, T-4 converting enough to T-3, however it's rare.

I am Hyper/Graves' and I forget a lot too.  Things like, when I go into another room, I forget why I am going there. However, a few minutes later it comes back to me. It must be a hypo and hyper thing.   My brain turns off when reading long items/post, they just turn me off. Many short paragraphs helps to get through it, otherwise, I read a little then give up.

[Newbee2000]

I've also had some short term memory problems since hashi/hypo set in. It's gotten a lot better as tsh became lower!!!! Discuss this w/ your MD and keeping taking med. As your tsh number declines (gets closer to1) you should notice an improvement.  It can take many months and a few adjustments in med. dosage before you feel better. Good luck!

[kitcurious]

That is scary. You need to bring this specific worry up to your physician. They may be able to give you something to help you in the short run. I was falling asleep as well. Not exactly while driving, but while stopped and waiting for my son and I would get drowsy at long lights, that scared me as well.

[turtlekeeper]

What lab results are most important to get?  They usually do FT4 and TSH but that's it.  Should I ask for more numbers next time?  Yes, I definitely should get my own copy of the results to chart it.  Thanks for the suggestion.

I've driven thru 3 redlights/stop signs in the last 3 weeks.  Kind of scary.  They weren't obvious ones but still, I had my daughter with me and these things are frightening me.  I try very hard to concentrate but driving is hard.  I find myself zoning out very easily and my eyes hate to focus.

[kitcurious]

Oh yes. I am hypo/Hashis and have even given up trying to disguise it. I will stand in the middle of the floor and ask my boss "Do you know why I was standing here?" and she'll say no, she can hardly even remember why she was.

[GravesLady]

I have been Graves' treated RAI for 11 years, doing Labs every 10 weeks and haven't had one stable level as yet. You are lucky to have your levels at normal. However what is normal?   Your symptoms are more hypo.  For some doctors TSH just barley in Labs reference range is normal, but we still can have symptoms, so our levels need to be more into range to feel better.
If you haven't had test done within the last 3 months, it might be a good idea to have them tested again. Our levels tend to change while RAI is still working to ablate our thyroid, which is some case could take up to 10 years or longer, depending on the RAI dose. So periodically we will need dose adjustments to compensate for the change.

Usually, not in all cases,  Graver's feel better with TSH at the lower half of Labs range.  I would suggest 1  for a start.  However you  must take active part in your treatment.  Get copies of you thyroid test (all three) with Labs reference range. Other things could be going on that will tell in thyroid levels.

Once you find the level that is best for you, you should start feeling better if symptoms are thyroid related.  

Good Luck.

[DLA]

Oh, yeah.  Except for a lot longer time line our stories are close to the same.  Actually, I was hypo for over 5 yrs, even though dr claimed my TSH was normal.  My TSH was 5.6, that is hypo.  Found another endo, a good one finally, and she now has my TSH at .93.  Now she says it is good.  They like TSH around 1.0.  After being hypo for so long I now have other problems b/c of the damage of having TSH off for 7 1/2 yrs.  

Check into your levels and find out what they are.  May need to be adjusted some more.  Know it is hard, but make him listen.  If not time to fire him and find a new endo.

Good luck.
Dac

[Carrie Anne]

I wish I new myself, I find the way I feel at times to be frustrating...almost to the point of madness. In a conversation with someone not even able to keep up because I can't focus long enough to understand what I am or the other person is saying. I wish you and all those struggling with this the best of luck trying to find the right meds and able to function.

[turtlekeeper]

Thanks.  Yes, I have Grave's but they did the radioiodine treatment so technically, my thyroid levels are under control.  I'm still not back at work (been off since the baby...it's been 3 years!!) but I need to go back soon but I really don't know how I'm going to function being all "spaced out" all the time.  I wonder what it is about this whole problem that causes the Brain Fog.  Is it TSH?  Is it T4/T3 levels?  What is it?

[Carrie Anne]

I was diagonosed with hypo, and those symptoms you are experiencing are classic hypo symptoms. If you have Graves then you are hyper, correct? Then your meds might need to be adjusted again...sorry to be the bearer of that news but unforunately it can take time to get it under control. I have been diagonosed for three years and the first couple went well on the syn but now I am experiencing alot of problems again, best of luck!! Try and be patient and don't allow your doctors to tell you how you feel. Be kind but firm!

[hawkfan]

Yes, I know about it.  I get that way when my levels are off and my TSH is too high.  Have you noticed an improvement since the supplement was added?  If so then maybe you need to change that even more.

I don't have any good suggestions for you, I just wanted to say that I get the same problems and I agree that it sucks!  You aren't alone!