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1059090 tn?1254470401
heart problems with chiari
hi everyone,

ive been having heart problems recently, the beat is slow then speeds up, my blood pressure ends up being 204/110, went to hospital, was sent home,
now awaiting a 24hr heart moniter, i get so lightheaded, and weak, heavy, if i take a step of stand, or even roll over in bed, it becomes hard to breath,
I have had this alot, but had never had a BP, or heart listened to while it happened, i dont normally go to doc, but i felt so bad, i decided i should go, which i found interesting as it maked me wonder if this happens every time,

my question is....... Do you get heart and Blood pressure problems with chiari and if there is anything that can help this effect, of relieve it????????
at the moment i seem to have problems one after another. lol
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Page 5 of 5
800724 tn?1254443918
i know when i got chiari, my doctor noticed i had a fast heart beat?
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Yep, metformin is has multi-uses apparently. it is tough indeed. Just wish they would listen to us! I keep telling myself that one day doctors and other people who think we're insane will understand and feel like idiots when they realize we weren't lying.

Selma, do you know when that's happening? I think it would  be a good idea to ask questions.

Neava and Sheila: they told me i have a leaky valve..which is very common and not life threatening..dont know the medical term. My heart does race and beats weird at times. They're inserting a chip (lubricor or something like that) instead of the halter monitor at least for 30 or 60 days to catch anything the doctors are missing. It's funny because the cardiologist's PA made me feel like she understood me better than the NL i had seen. She knows about the Chiari and she's said "well it only makes sense that your body is going haywire if your brainstem has pressure, your brain controls everything else"  They're also gona do another Echo. Neava, have you been tested for sleep apnea??? It just came to my head that my cardiologist told me once that when you have sleep apnea it might cause your heart rate to go out of whack bc your heart is overworking when you stop breathing...or something like that. Ne way i thought i'd ask if you've checked for that.

Ohh!!!! I found a specialist 2 hrs away to the west of me in Austin..BUT he's a pediatric surgeon w/20yrs experience..i'm gona call and find out if he sees adults. I believe there might be another chiari specialist is houston which is 2hrs to the east of me..i'm excited! I scheduled an appt w/another NS either way for a 2nd opinion..for the meantime.
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620923 tn?1452919248
I will get the info and post a thread.
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1285653 tn?1288362229
I have CM1. TIA in 2008 (one dx, one possible), mitral valve regurgitation. My BP is always very high. It was 160 over 100 at my dr on Thursday. I take blood pressure medicine daily. It is interesting that my BP was 80 over 60 prior to 2008. Funny!
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1059090 tn?1254470401
no i havent been tested for sleep apnea,
i also gag in my sleep at times, where i wake up chocking, and dream that im swollowing unusual items, like a packet of straws, its such a pain as i wake knowing that i can not swollow as the straws will go down, i end up panicing and swollowing i dream the straws going down my throat, im aware that this is happening but cant stop it, i then realise that it was a dream, its so scarey, im use to it now, i find it funny, and interesting the types of stuff i dream, i havent done this for awhile, lol my friend laugh at me, i dont blame them, every week it was a different item.

i find that my body goes down about every 3-4wks and lasts for a week, when this happens my heart plays up, im lightheaded, i have a mild headache, very weak where i cant walk, i get out of breath just standing,  i get so exhusted, my muscles ache and hurt even when lying down, my eyes go out of focus, i feel like im buzzing, i feel like im dying and body shutting down, blood pressure up high (i just found out),  think thats my pattern, its unusual, i then start coming right and getting stronger, day by day life seems i bit beta, i get tired alot, and mild symtoms that i just described, but it easier,
well i think thats the pattern anyway, its been like that for the last couple of months, no that ive mentioned it, it will problem change,

i went like that over a week ago, well i had a wedding to setup and spent 3days on it, i have found this wedding very hard to do, i feel its going to take a fews days to get ova it,
sometimes i can go and go with no problems, i was glad this morning when i packed up the last of the reception, i woke with a horrible heartache this morning, to the point i had to stay in bed until painkillers kicked in.

i was wondering if anyone else has patterns like this or is it all the time,

DO YOU HAVE GOOD DAYS AND BAD DAYS
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1179332 tn?1297482590
YES!! I think we all do...when my symptoms were really starting to surface..they totally cycled like that..I would have a really bad week and then a good one. That was why it was such a problem to get the DR to take notice..I would have a bad week so I'd make an appt and then a lot of the time it wasn't nearly as bad when I finally got to see her.

The choking dreams...that screams that you are having reflux!!! I had those too...you are most likely having the stomach acid back up into your throat while you are sleeping and it burns making you dream that you are swallowing something weird like straws. You feel like you can't breathe or swallow because your trachea is closing off to prevent it going into your lungs. The best thing if you are awake enough..is to sit back up and gravity will help force it down. I have woken up thinking I am swallowing razor blades, acid...one time it actually came up through my nose!!
Also, if you are having bad heartaches...and you have had your heart checked out and it's okay...it could be really bad GERD too...it causes me exceptional pain when it acts up. One time, I actually went to the ER b/c I thought I was having a heart attack it was so painful. The only thing that cured that attack was 3 days in bed and T3's.

I'm sorry I can't remember...have you had any stomach treatments? Something to neutralize the acid? I would tell your DR about the feelings you get when sleeping. If it is happening enough I would get a prescrip med that you could take b4 bed. I had one for awhile and it really helped..I think it was called Ranitidine.

My theory is that there is a nerve (vagus nerve) that is a cranial nerve that runs all the way down through to your digestion etc...I think if your gag reflex is impaired that it could also impair the LES (sphincter at the top of the stomach) and that is what causes the acid to be able to come up your throat.

The rest you describe is very familiar to me too...a lot of the buzzing and exhaustion happens to me after I overdo muscles that are weak to begin with...then they buzz like crazy. I still wonder if you are not suffering from some type of hyperthyroid..that would push your BP up too.

Take care
Carolyn
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1159737 tn?1286520857
Dreams are your sub-concious mind talking to your consious mind. it's like, when you are asleep, your sub-consious mind knows something is wrong, but your consious mind is asleep, so it has to do something to make your consious mind take notice. So, since it's something weird like straws, it scares you because that is the only way you will wake up right away.
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1059090 tn?1254470401
lol i had to laugh at the razor blades, my worse one is a pile spockets.
Ive had a camera down the throat and everything was good, had a scan it showed Gallstones, that all my stomach tests i have had,

my stomach specialist thinks its just reflux, i should go back to him, and talk about other things that are happening, i forgot to say about the chocking when i saw him last,

your theory on vagus nerve is what my doc thinks the same is happening, He also thinks that its in the brain and not with the body because of cord damage, i also have pain while eating certain foods and food get stuck, where i cant eat anymore,
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1179332 tn?1297482590
Sounds like your dr is on the right track..of course, whatever damage that is done to brain or cord...causes effects on the body, so it's a little of both. It's very hard when you first realize how much of your body can be affected from that one thing.

It's a downer but unfortunately just another gift from Chiari..

I'm sure you've been told this, but try to limit acidic or spicy food especially b4 bedtime. I would go back to your stomach dr and ask about a nighttime prescription.

Carolyn
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620923 tn?1452919248
We do have a GERD forum and have some good pages of info in the Health Pages  too...tips on  foods to avoid and lifestyle tips such as not eating for 3 to 4 hrs prior to lying down.

Many with chiari have GI  issues....

"selma"
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Yes, i have good days and bad ones...more like Carolyn..one good week and then another bad week. As far as the dreams go I agree with Carolyn about GERD. I have GERD and i get heartaches REALLY bad if i dont take my meds for it. With sleep apnea though I would get up gasping for air a few times a night. Once it was so bad that it took a few minutes for me to breathe normal again. I seriously thought i was dying cause my heart was beating real fast and i couldnt breathe. My cpap resolved those issues. I just started using it again and i've been feeling more rested and havent had those episodes in a while.

To all: do you know if any type of therapy is an option? come to find out my mom finally believed me since i've been talking about surgery and she told me my aunt has something wrong in her head and they told her she needed surgery. she doesnt know if its chiari but she did tell me that she's been going to therapy and its helped her out a whole lot.
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620923 tn?1452919248
HI...in response to ur ? on therapy...I would think it all depends on if u have a CSF blockage or overcrowding...if so a chiari dr would suggest surgery again looking at symptoms as well.

If u were not a surgical candidate, than possibly PM or some form of therapy may help.

Since we r all diff and tolerate pain on varying levels it is hard to say what may or may not help, but if a dr said u r one to monitor at this time, I would ask what if ne type of therapy may be suggested and at least tried.

"selma"
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1059090 tn?1254470401
ive just been reading all my MRIs again, can anyone explain what
LARGE FORAMEN MAGNUM PRESENT.

and also does anyone else have any lesions on brain?
could it mean that there is still a possibitly that i also have MS,
it was discussed, by surgeon and specialist, but told to enjoy live and see what happens,
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1059090 tn?1254470401
that was my last MRI done 19 november 08,
i think its time for another one, ive had no followup since,
its also i have scattered high signal foci, one possibility would include a demyelinating pathology, but not progressive.
ummmm interesting, could i have both, MS and CHIARI???
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1179332 tn?1297482590
The foramen magnum is the opening at the bottom of you skull where the spinal cord comes through...if it says that your is large I am thinking that there it means that there is NO overcrowding.  A lot of people with Chiari will have a stenoic foramen magnum (which means narrowed) due to the tonsils crowding out the space.

However, it is really hard to know what they mean when they word these things. I think that you should have another MRI too..that's coming up to 2 years ago.

Carolyn
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Thanks Selma! I guess we'll look into all that once I have my MRI re-dos. I have a lot of questions for my surgeon. And I'm working on getting in touch with the office of a surgeon who I believe is a chiari specialist in houston. Good thing is that I have family in Houston so it wouldnt be a problem for me to drive there it's only 2-3 hrs away.
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620923 tn?1452919248
Glad to hear u found a dr in an area u can go without too much cost for u...lodging wise. My DD is in NY so it is one of the reasons we went there as opposed to CO...lol...once u find a dr u r comfortable with that u know is  a true chiari dr...then u r halfway to getting the proper treatment u need.

Did u look to see if the dr is on our list?

Keep us posted on the visit
"selma"

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I gave up reading what everyone else wrote, because there is so much, lol so if this is just a bunch of repeat, I apologize.
I'm 3 months post op, and I have something called AFIB, which is where my heart skips random beats, and it'll slow down and speed up. I got really dizzy, chest pain, lose of breath. I went to the ER 3 times for it, and they took xrays and other tests. I went on a 24hr monitor and then a 30day monitor. (NOT FUN BTW). And all they could find wrong was the AFIB. I still have this after surgery, so I do not know if this is related or not, but I do have heart issues.
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lol call me stupid but what is "DD"? sorry brain fart...I have yet to contact the office in Houston. I got his name from a list that was posted under "chiari specialists" . I will keep you all posted. I've been talking to my mom about the surgery and now she's taking me serious...but she begged me to talk to my aunt about the therapy. well i spoke to my aunt today and she told me the dr told her something about the vertabres in her head...and she told  me that they cant really tell her what is causing all the problems. since it can run in family i told her it might be chiari. We have the same symptoms. Maybe I'll be some help to her, I'm excited! We're not that close but she perfectly understood me she told me if the surgery is necessary then lets do it...when everyoneelse says i'm insane.
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999891 tn?1407279676
Dear Daughter lol
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620923 tn?1452919248
Sorry I was out today, but I see Ray answered ur brain fart...lol.....

I am glad u found a drs name here and I hope he is one that can help u...please let us know once u see him.....

Not that it is a good thing another family member may have this, but, things happen for a reason and u just may build a close friendship where there  was none b4 : )

"selma"
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1059090 tn?1254470401
i agree selma on the family thing,

my mother has mild things that i get, but she has never been checked,
Her idea is if they know for sure what is happening to me, then thats what she has. lol
if i speak to her about how bad i am or how hard it is with normal life, she says "get over it, it hasnt killed you, so dont worry about things, and get on with it,
i dont have a supportive family, when i asked for help a few months ago, and that i couldnt cope, my dad popped over and told me, that i was killing mum and that its all my fault,
i said to him that for once i would like some support from them, he nearly hit me, and told me that i was married and im not their problem anymore, and i was very ungratetful and that mum was there for the birth of my first child, (which was 10 yrs ago), and i did all that work. lol

any if any of your family understands and is supportive, you are very lucky, it makes it alittle easier, so run with it and listen to them.


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620923 tn?1452919248
Hi...too many have had the same issue with no support from their family...the problem is, guilt...why didn't they do something sooner...were they a bad parent to miss it...or what did they do that u were born that way....

It is not u or ur fault...they just can't deal with the guilt.

But, u have us...we understand and r willing to listen : )

"selma"
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really? thats what it means? lol Once I call the office and get more info I'll let you all know what happens from there. Yea its not that it's a good thing that someone else in the family would be dealing w/chiari but you're right things happen for a reason. Perhaps we'll be closer even though she's 5hrs away. I'm sure we I can help her out . Here in San Antonio there arent any specialists and much less in brownsville (tip of texas, border city to mexico) so I'm sure I might have more info to give her.

Neava: I'm sorry about all that but like Selma said you have us and we understand and are willing to listen =-)
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620923 tn?1452919248
Yup//DD= Dear Daughter...lol..DS= Dear Son....DH= Dear Husband........

I was down to San Antonio a few yrs ago....and Austin....and I loved the huge mall btwn the 2....can't remember the name of it tho....I enjoyed driving in TX...very flat and roads were easy to navigate : )
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0o0o0o0o ok it makes more sense..lol I thought it was a medical term i was missing lol told you brain fart! I love it here.semi large citi w/o the "citi" feel like houston or dallas. Oh yea I havent been to it but it's an outlet mall in San Marcos its awesome. There is one in Edinburg, TX down south to I've been to that one and it was great. Lol yea flat roads here in San antonio though you'll run into a few hills.
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620923 tn?1452919248
That was it San Marcos...fabulous place...and HUGE...like most things in TX...haha

well the trip from Austin down was pretty flat...we went to the Riverwalk and the  Alamo.

LOL...Oh my, well a few have an issue with our abbreviations....but we do have the list : )
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yup HUGE. 0o0o I like the riverwalk but Ive lived here more than 4yrs and have been there twice in the timeframe lol well now that I know your abbreveviations I'm not lost and I ahve no issue with them =-D ...wheres the list??
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620923 tn?1452919248
They r in the Health Pages, here is a general link to all the pages

http://www.medhelp.org/health_pages/list?cid=186

and here is one directly to the  abbreviations

http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

LOL
"selma"
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620923 tn?1452919248
oh and here is a thread of the links as well....

http://www.medhelp.org/posts/Chiari-Malformation/HEALTH-PAGE-LINKS-/show/1146333
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Thanks! I'll look at em when i get the chance =-)
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I had an MRI of my brain today (thought it would be of my spine...guess not) ? 1. will a plain MRI of the brain show CSF blockage? Syrinx? ( in the portion of the spine viewable?) 2. Does Iodine make you feel lightheaded?..I havent had an episode of my heart racing for more than 5mins...and today it seemed after i had the MRI I had to go straight home instead of work and lay down for about 2hrs cause my heart was beating faster than usual.I'm not sure if it was my plain ole chiari-ness or the iodine...
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1059090 tn?1254470401
i all

thanks selma and gmaldonado for your  support, i love coming on here, and knowing that im not the only one who has problems or feels that way, even though i would perfer if none of us were here at all,

with my family everything gets put under the rug, when i was a kid there were i few things that i did, which now dont make since and why my parents never took me to get checked, but oh well, i guess they didnt think, the good thing that has come out of my family showing their true colours is that, i now know how not to treat my own kids, so i must thank them for that, no seriously, if in anyway it helps me be a better parent, than yeh i thank them,, still ***** for me lol

when i had  an MRI and they wanted to check my fluid i had a moniter put on my finger, (i dont know how that checks it) but thats what they told me. seems dumb now that i think of it, sorry you werent feeling very well after MRI, i hope you are doing beta now.


i went away last night without the children, it was just me and husbsnd it was great, but today i have muscule weakness, i hate that when you go away or do anything you pay for it later, but atleast i am relaxed, just picked the kids up, that was sad, i dont get breaks very often maybe once a year, but its good to be home, now i can get over the travel.

thanks again everyone for your support, you are my second family
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620923 tn?1452919248
HI...oh I totally get the family thing...I had a drop attack in front of my mom, I wasn't taken to the drs for it either....but when I went myself, they gave me prozac....so, we thinks drs give us the run around now...

LOL...I always said my were like ostrich's....lol... buried their heads in the sand...so really similar....

When u had ur CINE MRI the clip is added during the second half of the testing and is used to monitor ur BP...if the CSF moves in rhythm with ur BP (blood Pressure) then u most likely have a blockage.

I hope that helps u understand it a bit more : )

"selma"
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1059090 tn?1254470401
thanks for explaining that, about the BP, whoo i never knew that, im so exiting that it been explained, lol
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620923 tn?1452919248
No worries : )

I know the drs really should explain what is  going on...the members here explained a CINE to me b4 I had mine, so I knew what to expect.....

"selma"
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You're welcome! All I've ever had is a plain MRI. My next NS visit I'm asking him for more. Last night i was at an aunt's house and i mentioned that if i dont get the help i need from a specialist here i have a friend in chicago who says i can stay w/her and she can  help me out. My aunt said " AND YOU'RE GOING TO CHICAGO?!! JAJAJAJAJA" yea that went great lol. I'm used to it. Thanks for giving us a little more info Selma =-)
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1059090 tn?1254470401
good on you, ask for more thats what im doing when i go to NS in two weeks, im not going to leave until he does, lol i will be draged out by police or something, but i do like their uniforms,

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lol ok you dont want to spend the night in jail so calm down lol but i do know what you're saying..i dont want to leave until he tells me he's gona run more in depth tests. and ama go back to my endocronologist (mispelled) for hashimotos thryoiditis..i'm convinced they have to treat it!!
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1059090 tn?1254470401
i am surprised you havent been treated, i think thats terrible, that sort of thing should dif be treated, when do you go?
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Well he told me i had a goiter and my thyroid is enlarged BUT my TSH, Free t3 and t4 are ok...the last they checked. My friend recently went through thyroid cancer. they removed her thyroid. I'm not saying that I might have that but at one point it was suspected bc i had a mass. It went away and so they didnt biopsy my thyroid. My friend tells me that she felt a lot of the symptoms i'm feeling w/the exception that her neck was very swollen. So i'm going to keep pushing for that too. I just went to the specialist 3wks ago and they still havent called me w/results.
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1059090 tn?1254470401
thats terrible, maybe u have follow up yourself, wouldnt the results go to gp?
thats what happens in nz.
thats still not good, maybe they didnt find anything



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1179332 tn?1297482590
Sorry to nose in on the conversation...

But when you get any blood tests done, make sure you request a copy of the results. It is a fairly simple process in Canada...I'm sure it is easy to do in the states too. I found out I had Hashi's from the results I received way ahead of when my GP finally decided to contact me. I get ALL my results now from everything.

My dad has the same thing...a large goiter but all his thyroid tests came out fine. He recently had bladder cancer and so they did do a FNA but it came out cancer free. I still don't buy it though...I think they just tested his TSH at a time where his thyroid was functioning ok. With Hashi's it will let up and your thyroid does sputter to life here and there, it happened that way with me for awhile b4 it finally went downhill all together. Did they test for TPO antibodies?

I actually have a followup US tomorrow on my thyroid to see if the nodules have got any bigger..

Carolyn
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neava: yes i'll have to follow up myself. Idk whats the deal w/these doctors!!

Cmoeller: I'm going to call and try to get them. You see I don't get that, the way it's up and down. I know it can be hypo or hyper back and forth. My doc told me it can go hypo a few months then hyper a few mths. I wonder does it happen from wk to wk? I just find it odd that supposedly my blood work is always "ok:" I really think that my heart racing and my hair being so thin when it was super thick (and i had a lot) is caused by my thyroid. They did test the antibodies. Idk what they look like now but the last test they were high.
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1179332 tn?1297482590
Well if they were high...you can bet that it is affecting your thyroid. You said that they did free T3, T4 testing too? Sometimes the TSH levels are not accurate.

I think the hypo/hyper swing just varies person to person. I would get hyper for several days and then get really tired and lethargic after that for several days. The antibodies attack in waves and that affects how your thyroid functions. My AB were extremely high too and my GP and ENDO said it is just matter of time until I lose all Thyroid function so they have to keep following it. I went from 50mg to 75mg (of synthroid) which is holding me now at 1.2 but they expect that eventually I will be on about 125mg.

Maybe it hasn't succeed in damaging your thyroid yet? But they will need to do a follow up test every 6months b/c it will at some point.

I have half the hair I used to...it won't grow past my shoulders anymore when it used to go down my back. I clog the shower drain on a regular basis...even with my TSH where it is now...it still comes out in handfuls.

Carolyn
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You see that makes more sense. I really need to get a new ENDO. Mine told me to go back in 3mos then after that he didnt give me a follow up until i asked for one this yr. I think it just might not be damaging my thyroid to that extent. My hair falls off in handfuls too my tub gets clogged now =-( I noticed it happening more after i had my children especially right after childbirth (the months following) I noticed it doesnt grow as fast or as much as before either so i keep it at shoulder length...IF i dont manage to chop it off for summer =-D
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Got my results! TSH=3.679, FT4=1.1, Antibodies= TG20.00 TPO 10.00 . No FT3 was done IDK why...but they told me the ENDO is not sure if I have PCOS and they said my vitamin D was way too low so they're giving me a prescription for 5k units =-\ don't we get vitamin D from the sun?? ( among other things)..would explain why i'm so pale
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1059090 tn?1254470401
is your results good or bad, im unsure about normal levels.



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i have no idea =-\ i was hoping Carolyn can help me out. I'm looking through the thyroid disorders forum for some help. Idk why my endo didnt bother to run ft3...These docs are so freakin lazy!
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1179332 tn?1297482590
Well I'll give you what I know...mainly advice from a friend of mine...

Your TSH could still be lower and should be...I didn't feel better and notice the weight start coming off until it was at 1.2 and my ENDO said it definitely had to be below 2.5..so yours is still too high.

Where there reference levels listed on your report? There is different comparisons depending on the lab.

For instance my reference level was 600 so very high!!

You want your T4in the top 3/4 of the range and your T3 close to the top (but not over) this is according to my "thyroid expert"

They should have done your free T3 b/c for some ppl the problem is converting T4(the thyroid hormone) into T3(which is actually used in the cells)..so they should have made sure there wasn't an issue there.

For Vit D...we do supply our own from the sun ..but if yours is really low it could also be that you are not absorbing the Vit D properly in your body. This is cause for concern b/c it can signal other issues such as metabolic disorders or digestive disease...so the SHOULD be checking it out. Plus, Vit D has been proven to be very important for nerve impulses...so you need to make sure you have a sufficient amount!!

As why they don't just do the right tests w/o us asking...I would give a million $ for the answer to that one!!! I keep hitting that wall over and over again..

Carolyn
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I no longer have problems with my blood pressure.

Chiari people have sleep apnea problems that make their blood pressure and pulse to go crazy.

I had decompression surgery in '08. The tonsils were 12mm. They coagulated my tonsils to bring them up. I've had a lot of trouble with my blood pressure going from 210/110 down to 80/40 and my pulse would go from 46-150. Dr's were very cautious with blood pressure meds because of this.

I found out that sleeping with my head elevated and using a blow-up airplane pillow, that is only partially filled, around my neck works. The airplane pillow keeps my neck steady and keeps my head raised on the 3 pillows.

The bottom pillow is stiff and the other 2 are soft. Otherwise I wake up with headaches if the pillow were too stiff.

Blood pressure is now steady every day at 120/72!

Hope this helps.
Jill
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620923 tn?1452919248
Hi and welcome to the Chiari forum.
You are right sleep apnea can and does affect BP for many with Chiari but many also have POTS and EDS with mitral valve prolapse.....and a few other issues that can also affect BP .....

I am glad you found a way to help regulate yours..

May I ask, did you have any other DX's of related conditions?
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