I hate hypothyroidism!!!!!!

iVillage Member
Registered: 01-22-2007
I hate hypothyroidism!!!!!!
8
Mon, 01-22-2007 - 3:20pm
Hi,
I'm new to the message boards and I'm hoping for some advice and support from people who actually understand how much this sucks!!!!! (No, I don't have a very good attitude today)
Anyway, here's my story. After too long procrastinating I finally made an appointment with my Gyno. I needed to make sure that I wasn't pregnant since that's the way I had been feeling for a few weeks. I'm not, but she decided that we better check my TSH levels. At this point I could barely get out of bed, was depressed, achy, my hair is falling out in clumps sometimes, my reflexes seem really slow (my husband accidentally hit me in the face and I didn't even move because I was so spacey!), I get real confused sometimes and have a hard time finding the right words for things and all of a sudden I can't spell and I have a headache and am dizzy all the time! So, the test came back that I have hypothyroidism and the nurse (R.N.) called with the test results and told me that I should just start taking this pill everyday and then come back in 4 weeks to retest my blood and we'd probably readjust my medication after that. I asked what I can do about my headache that won't go away and the fact that I'm dizzy all the time and the dingbat RN told me to drink more fluids and take stronger pain meds. I don't want stronger pain meds! They just make me more nauseous and that doesn't address ther REASON for the headache and the dizziness. I tried the more water and now I just have to pee more. :(
I finally got the Dr. on the phone herself and explained that this headache wasn't going away and I'm miserable and so dizzy I'm practically falling over. Anything I've read about hypothyroidism doesn't talk about being dizzy so could this be something else?
She ordered a CT scan of my head for the next day. I get there to do the CT and they decide that I don't need the contrast since it's "just a headache" and I'm like, yeah, but I'm really dizzy too. No one really seems to think that's unusual. Anyway, CT scan, no contrast, negative results, I don't have a brain tumor that they can see... yea! but I'm a little concerned that maybe there's something they can't see because they didn't use the contrast but whatever. The Dr. prescribed some kind of migraine med. to help with the headaches but I've had migraines before and this isn't a migraine!
So the scan was okay and I started taking the pills about a week ago and I'm a little better. I can spell again (most of the time) but I still feel like I've lost some brain cells along the way and sometimes I can't communicate what it is I'm trying to say. My headache is STILL here.... my hair is still falling out and my head hurts so bad that I can't comb my hair because if it pulls it's like an electric shock going through my body. I still wake up really tired and I'm really frusterated! I don't know if I can do this. I get that one of the symptoms is depression and a feeling of hopelessness and guess what, it's here!
How do I get through this? They've told me that it'll be a matter of months before I feel like myself again completely! I hate the idea of taking a pill every day for the rest of my life especially for a condition that I don't even understand why I have it. They never did any tests on me to figure out WHY I have hypothyroidism besides the brain scan to make sure I don't have a pituatary tumor but they've never looked at my actual thyroid or did any blood work other than the initial TSH test.
I'm paranoid... is that part of this disorder or am I losing my mind? I'm worried still that they missed something on the CT scan or that I have thyroid cancer and no one is checking into it. Do I just be patient and see what happens? My life feels like it's on hold while I deal with this. I have a husband and a three-year-old who keeps asking me, "Momma no feel so good? Momma feel better now?" He doesn't understand and I feel so guilty. I force myself to do stuff like take him to playgroup and stuff like that but I'm not enjoying my life!!!!!!!
Help!
Kris
iVillage Member
Registered: 04-06-2003
Mon, 01-22-2007 - 5:16pm
Hi I feel for you and i competely understand what youa re going through I have extremely high levels that arent coming down with meds but i am a unususal case.I would also ask for a mri to see if that can detect something going on wiht yur brain it can give amore detailed picture and if you are stillhaving headaches mayber suggest they change the medicine to somehting differnt i am on armour (iam allergic to synthetic drugs))) also have them check your blood pressure and chloestrol just a overall workup to rule out anyuthing else goodluck and i will be praying for you
axsai

Axsai

iVillage Member
Registered: 01-22-2007
Mon, 01-22-2007 - 6:18pm

I feel your pain - I was diagnosed with hypothyroidism 10 years ago. Taking a pill every morning gets annoying, but it's worth it to feel better. I do have a question though, if your Doc is not an Endocrinologist were you referred to an Endocrinologist? If not, see one. He/she will run some tests to determine what is causing the Hypothyroidism and help you through managing the syptoms until you start responding to the medication.

Good Luck:)

iVillage Member
Registered: 01-22-2007
Mon, 01-22-2007 - 8:51pm
No, I haven't seen an Endocrinologist and no one has even suggested that would be a good idea. It's like they think I'll just be happy to take this pill everyday for the rest of my life and just hope that it works.
I'm going to call my Dr. tomorrow and let them know that these headaches aren't getting any better even with the migraine meds and that I want to be referred to an Endocrinologist. I had wanted an MRI rather than a CT scan but no one seems to be listening to me and I was having a really hard time communicating for a while. I would get flustered, forget important things that I had wanted to say and then just give up. Now (at times) I'm a little more coherant and I think I'll be able to get my point across better. Plus, I've started writing things down so that I don't forget so much.
It's crazy that I can forget my symptoms when I'm talking to the doctor. I forget everything all the time these days!!!
AAAAUUUGGGGHHH!!!
Thanks for the support though. It does help to know that other people know what this is like.
Kris
Avatar for cl_calley7
iVillage Member
Registered: 03-20-2003
Mon, 01-22-2007 - 9:17pm

Hi Kris,


Welcome to our board.


From your description, you do have a lot of hypo symptoms.

 

Calley7

iVillage Member
Registered: 01-12-2007
Tue, 01-23-2007 - 2:08pm
Gosh Kris, I hate to hear that you have to start this "little" episode in your life as well. You can read my story at"thyroid and bone pain". Yes, it all goes together. I've been "low" in my medicine and I forgot that I was at work and supposed to be memoing an account...and then you come too and wonder what your doing..It's like you just space out..It's scary....It does take time for the medicine to make a difference but as you mentioned you believe you've noticed an improvement. As for the energy, I just make myself do what has to be done. I feel worse if I just lay down...it's like giving up, so everyday I have a plan....and I just do it. diet helps. Stay away from heavy carbs, if your like me, cause it just puts me on the couch for the rest of the day. No bread for me. Keep it light. As a matter of fact I remember when I first found out my thyroid was bad, that explained the wanting to eat a loaf of bread trying to get energy to get something done, when the bread was making me worse. So now your off to a new adventure of finding out what works for you and what to avoid. And I'm like you, I know how my body works. Once again read my story and I'm not about to go to another Dr to have tests run on bones that get better whenever we adjust my medicine. Keep a journal, your going to need it to remember what you felt like and what strength of tablet made you feel better and what made you feel worse and how it effected your headaches. Don't underestimate yourself. I hope this finds you still improving. Hang in there....and I've also decided to enjoy my life just to spite the "enemy"...You'll learn how to manage it....Praying for you.
iVillage Member
Registered: 01-23-2007
Wed, 01-24-2007 - 7:49pm

PLEASEsee an Endocrinologist!!!!! There are so many other blood test that need to be done to determine the specific cause of your thyroid problem and to find the proper medication, or in some cases combinations of medications that are needed.

I was initially diagnosed by my OB/GYNalso, but he would see me any further for my thyroid....he refered me on to a specialist.

There are all sorts of things that could be wrong. Take your initial test results and go to an Endocrinologist asap!

iVillage Member
Registered: 01-22-2007
Thu, 01-25-2007 - 2:05am
Well, I left a message for my doctor explaining that my headaches and dizziness are still here and the migraine meds she put me on aren't helping and that I was concerned about the reason WHY I ended up with hypothyroidism so I wanted more tests done and I wanted a referral to an Endocrinologist.
I got a call back from her nurse stating that she referred me to a Neurologist for my headaches and dizziness. She didn't even mention the other tests I requested for the thyroid. Her response was "most of the time we don't ever know why these things happen, they just do." I'm totally frusterated! This isn't my usual OB/GYN, the one who delivered my son and who I love is impossible to get an appointment with in the next several months unless you're pregnant which I totally appreciated when I was pregnant and had toxemia and had to see here every other day for a few weeks but now it's a total pain in my a@@. I never really got a General Practicioner that I trust. The Dr. who referred me to the Gastroenterologist last year when I was having gall bladder issues is rumored to be pretty incompetent so I don't feel comfortable going there. I ended up having my gall bladder removed in the summer but only after they did a boat load of tests and I don't know that it actually solved the problem... I still get nauseous when I eat although not as often and I get pain in the same place once in a while but I was so sick of tests and of being sick that I just sort of decided that I wasn't sick anymore. They did a CT scan back then to make sure I didn't have some tumor lurking somewhere in my abdomen and found nothing so I decided I wasn't going to die anytime soon from whatever was going on there and just left it at that. Now I wonder if it's not all connected to the same thing. I don't know what to think anymore and half the time my brain is so foggy I can't think anyway! You know how it is...
So now I have an appointment for Feb. 5th with this Neuro. guy. Who knows, maybe my headaches and dizziness are actually neurological even though my CT was normal. Chances are he'll order an MRI which is what I had asked for in the first place and then eventually end up referring me to an Endocrinologist!
Sometimes I do still wonder if I'm going crazy or if some of this is all just in my head or if it's something I should be actively persuing. I'll talk to the doctor when I see him and see what he says. It seems that more and more lately I feel pressure in my throat. I can't feel any nodules from the outside like I've heard other people describe. It's just this feeling that I'm going to choke but not really. Like someone is pressing on my throat. I get real clausterphobic and can't stand to wear necklaces and I'm always unconsciously pulling the collar of my shirts away from my throat.
My other symptoms were getting a little better but seemed to kind of plateaued now if that's possible. I'm only on 50 mcg of Levothyroxine every day which my sister says probably won't help me too much until they up that next month after more blood tests and she says that I need to see an Endocrinologist too. (my sister's an RN so I value her opinion although she is my "little" sister so I can't let her know that I actually listen to what she says... LOL)
Anyway, I guess I just have to be patient and wait for Feb. 5th and see what this guy has to say. In the meantime, my head hurts, I'm really achy and my big toe has this weird pain in it like it has to crack but it can't. I'm falling apart!!!!! :o)
Thanks for all of your support. It does help to know that I'm not completely crazy and that there are people out there who know what this is like and believe me when I describe what I'm going through.
Kris
Avatar for daggs170
iVillage Member
Registered: 03-25-2003
Thu, 01-25-2007 - 1:33pm

Kris, my biggest suggestion to you is to get an appt. with the endocrinologist. Go for the Feb. 5th appt. and don't cancel it out, even though the more I have read your story the more I think you are really hypo. You mentioned something in this post that I completely forgot about that always happened to me before I even knew I had a problem (I've had a TT a little over 10 yrs ago to just put it briefly). You mentioned that you can't wear necklaces, and that is exactly what happened to me and I never knew why so I just didn't wear them. Also, you're always pulling at your necklines and I did the same thing and would give away all high necked clothing. Still didn't know what was wrong, but it did turn out that they discovered a nodule, and after all was said and done and I traveled the long road on that roller coaster through hypo to hyper, I have to say that I now feel great. But I would almost hazard a guess that you have something there on that thyroid, be it small or large--you're also mentioning that you feel like your choking at times. Don't hesitate and I would almost demand that you want to see an endo. Also, when my nodule was first discovered I couldn't even feel it, but the PC found it.

So, you are not crazy or a hypocrondiac by any means, there are many here that have been through it, myself included--and relating back to my own experiences I would say please get the needed attention that will help you. There is help there, you will go through a lot of tests and possible treatments, and taking a pill everyday of your life is not the worse thing in the world. It's a small price to pay for good health. Good luck and my prayers are with you, Bea

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