Aa
Venting again
Has anyone ever felt like just giving up? I went to my doc on Monday and he said that my parathyroid levels are definitely abnormal as both the pth and the calcium were elevated to the upper edges of normal. My vitamin D deficiency is severe so he said that I have secondary hyperparathyroidism. He put me on a mega dose of vitamin D. As it turns out though, I read that secondary hyperparathyroidism causes low calcium levels. That does not fit in my case as mine were high. Taking vitamin D can cause a stroke! Now I don't know what to do. It seems like its a losing battle either way. I can't go to another endo, and this one can't even handle my normal hashimotos much less this. I now have hashimotos, a growing goiter with nodules sometimes (yeah they go away and come back), high antibodies here and there, a tsh that is constantly going from hypo to hyper so that it can't be treated with drugs, panic problems, adrenal problems, vitamin d deficiency, and now abnormal parathyroid results. He laughed at me when I asked for these tests as it is, and I was right. I'm just tired of fighting to get well. I can barely get out of bed and take care of my son. I am sick of crying. I am sick of panic attacks, and muscle aches. I can't think straight, I drop everything, I have HORRIBLE gerd, I can't sleep, shortness of breath, dizziness, constant shoulder pain, reynauds, I'm cold and hot, flushing, headaches and I'm sure there are tons of other things that I just forgot. It's getting depressing. I can't find treatment and I just don't even know what to do or where to go anymore. I don't know if I should take the D or wait. UGH I'm just sooooo tired. I've lost friends, because people don't want to be around somebody who is sick all of the time. I can't go out. I'm only 31! When I finish school, I don't even think I am physically able to work. I guess I just needed to vent again. I just wonder how all of you guys make it through? I was thinking back to when I was 21 and I hurt my knee. Just on an accidental finding they found spots on my bones. I needed a bone scan and they said it was calcium and nothing to be worried about. Now I wonder if it has to do with my parathyroid which has just never been found in all this time. Regardless though, I am not a doc, and mine does not care about me at all. I called my insurance and they told me that is pretty much who I have to go to. I'm in serious need of help asap! I guess I just needed to get that all out. You guys always give me hope, and I just hope I can be as strong as those of you who have been dealing with this for years.
My name is Angela and I feel just as you guys do..my body aches, d burning sharp pain in my arms..I cry alot ..headaches. panic attacks ..my doctor says everything but d right thing ..my husband says he gets tired of hearing me say I don't feel well..like now I can not go to sleep!! All my tests were normal ..I am wreck!!! I also believe I have CHF..going to c my doctor later today and share my concerns..God bless us all!!!
OOPS one of my replies was for hessycat. I type to fast, and make a bunch of mistakes. I need to start proofreading lol. I always say that, but I never do.
Hang in there. I understand the in store mini attacks. My dilemma is when there are too many people with their baskets ramming them into other people. I usually get my aunt to accompany me with my midnight shopping. And we make light of that we are two thyroid insane people who lurk in the night. :) She understands me and vice versa. Yes, the ER is useless because their job is just to make sure there isn't imminent death...heck most of us feel like it's near. I challenge myself when I do outings. I try to leave without taking anything to see how long it takes for me to begin to panic. This morning I almost made it back home from the doctors which is about 6 miles from me. I made it home and the panic slowly went away. If it gets to bad I take a xanax and call my girlfriend who can make me laugh all day long. She knows that I panic and she will talk my ear numb, lol. Once it kicks in I am good. The air hunger is horrible because it does cause panic too, but I try not to think about it too much. As far as your date...if he can't accept you for who you are...move on to the next. My husband always tells me I knew something was wrong with you from the day I met you, but you made me smile. A website that provides insight to the day to day of living with thyroid issues...I like it. :) I fight through the attacks so that I can enjoy my daughters as well. I am sure your son is crazy about you. After all your Mom and mom's are awesome. :) Take care! <3
Makani -I feel exactly the same way about everything you said. I too suffer the extreme ari hunger which sends me into constant panic attacks. I yawn 1000 times a day in need of oxygen. I'm not sure if it my goiter or what, but I just pray it would go away. The ER does nothing. I'm so sick of hearing that it's all in my head. I panic when I am left alone too. I have stopped going out unless it is absolutely necessary and even then I have to bring with me an arsenal of supplies to help stop panic attacks. I get nervous going to the back of stores because I am not near exits. I have found though that if I take my beta blocker and leave right after, it stops the adrenaline from building completely and my body is physically not able to start a panic attack (even though it wants to). I'm just have mini panic attacks at the store, but I try to just work through them. It's a horrible, scary and miserably sickly existence like you said. I recently went on a few dates (I had to force myself to get out of the house) and this guy has sugar issues and high bp. Anyway, I told him I have all these issues and I'm having a horrible time right now with all of the symptoms so I just barely make it through my days and can't do a lot. Anyway he told me he didn't know how well he could deal with the sickness all the time. He is still trying to ask me out, but whats the point? This is my life. I'm always sick. Everyone is sick of hearing about it from me, and I'm not sure they even fully believe me. They DO run the other direction. If it's any consolation, I feel the same way as you. I'm thinking about starting a website about thyroid issues and such. I need some kind of outlet, and my dream would be that some smart doctors would read our pleas for a normal life and help us.
Makani- You have a wonderful son. My son is only 5 and I feel SOOOO bad because I'm going through such extreme attacks right now that I can't do much with him. I finally was able to make a snowman with him, but even that was fighting through panic attacks and doing it as fast as I could so that I could go back into the safety of my house. It's just miserable =(. I wish there was something we could do.
Makani- You have a wonderful son. My son is only 5 and I feel SOOOO bad because I'm going through such extreme attacks right now that I can't do much with him. I finally was able to make a snowman with him, but even that was fighting through panic attacks and doing it as fast as I could so that I could go back into the safety of my house. It's just miserable =(. I wish there was something we could do.
I hear what you are saying. It's sad and almost embarrassed to say that when I am left home alone I start to panic. And when I am driving my 8 year old daughter is the only person who can keep me from going into a panic...so let's say she's my co-pilot or my right hand gal. :) For the last two nights I have wanted to head straight to the ER for this "air hunger" I have been suffering from...I seem to be one of few who has it happening. It just sends me into a panic right around bed time, but I know that I am fine while I sleep. I don't have the apnea anymore like when I had my nodule, so I know that it's all good in that dept. My situation has freaked me out to the point where I rarely leave the house. I have the same thoughts....well it's been about a year and I haven't died yet, soooo....I guess I am gonna live a sad and sickly existence. Plus, when people ask how you are ans you tell the truth...they tend to run the other direction. So I have learned to quietly suffer. :(
I am right there with you makani. Just read my journal from about an hour ago. I also sit here wanting to just cry and I wanna run to the ER but I have learned that is a waste of time. I get the yeah yeah yeah too. Or I get that I need to follow up with my GYN, my Endo my PCP who are also completely useless.I do know that this thyroid illness effects everything in the body. I have so many issues I am so confused as to how to follow up with all these different doctors until sometimes I have told myself OK so far I havent died ...yet so I have go where I cancel follow ups because I get no answers. My son is 24 and he has tried so hard to help mom out. I feel horrible because before he goes out which isnt much , he says mom do you think youll be ok till I get back? He hardley will go out and leave me because he is afraid of what will happen to me. I feel horrible that this weight is on his shoulders. He tries to go to school two nights a week and will hurry back home as soon as he gets out. OK enough, sorry for the venting of my life on here. I agree with you God Bless us and help us all with better health and bless our families that suffer along with us.
Hey!!...
I completely understand the feeling of getting the "yeah, yeah, yeah" response from doctors. It's so frustrating that they don't take you seriously all while you have all these awful symptoms and no one seems to want to do anything! Keep pushing, keep insisting the doctors listen. It's the only way to get through to them. In an ideal world we wouldn't have to push but, unfortunately, sometimes we must.
I hope and pray you (along with the rest of us) find some answers!!
Take care!! : )
I completely understand the feeling of getting the "yeah, yeah, yeah" response from doctors. It's so frustrating that they don't take you seriously all while you have all these awful symptoms and no one seems to want to do anything! Keep pushing, keep insisting the doctors listen. It's the only way to get through to them. In an ideal world we wouldn't have to push but, unfortunately, sometimes we must.
I hope and pray you (along with the rest of us) find some answers!!
Take care!! : )
Well...there are definitely more of us out here. I couldn't help but to add to the list. I am sitting here fighting back the tears because I don't know what is going on with my body. And every time I tell my story to a doctor, they kind of "yeah, yeah, yeah" me to the point and tell me that all of my symptoms must be from other issues. I am currently suffering from high acth, high cortisol, and all the same symptoms Danie mentioned...especially the inability to take in a good deep breath. Some nights I am in such a panic about dying from not being able to breathe. What is the point of an on call physician??? I mostly get "Sorry I don't have access to your records and how would you like me to help you?". I almost want to say "You know, we can just have pillow talk on the phone til I doze off bozo! How about that???"
My poor husband is at wits end with me being ill because it's significantly impacting our income. My energy level and stamina aren't what they use to be and that makes me sad because I am gaining weight and loosing muscle. My plate is full, spilling over in fact. All three of my children are allergic to everything, they have constant doctors appointments and I am unable to keep up. My husband is clueless in that dept., but he is learning. I get a little laugh out of him becoming very domesticated...he cleans house, grocery shops, cooks dinner, and takes care of the kids. Although, in the end it makes me sad because as his duties increased, he now worries about finances along with household issues that I use to be responsible for. :(
I don't even want to get started with watching others have fun. That sends me into a downward spiral. :( I pray that we all heal from our issues and that we can be restored. I wouldn't wish how we feel on my worst enemy. Because this feels like I am scraping the bottom and I need to be lifted up, but my support, (i.e. friends, doctors, and most family) don't really have a clue what I am dealing with.
Best wishes and prayers to you all.
My poor husband is at wits end with me being ill because it's significantly impacting our income. My energy level and stamina aren't what they use to be and that makes me sad because I am gaining weight and loosing muscle. My plate is full, spilling over in fact. All three of my children are allergic to everything, they have constant doctors appointments and I am unable to keep up. My husband is clueless in that dept., but he is learning. I get a little laugh out of him becoming very domesticated...he cleans house, grocery shops, cooks dinner, and takes care of the kids. Although, in the end it makes me sad because as his duties increased, he now worries about finances along with household issues that I use to be responsible for. :(
I don't even want to get started with watching others have fun. That sends me into a downward spiral. :( I pray that we all heal from our issues and that we can be restored. I wouldn't wish how we feel on my worst enemy. Because this feels like I am scraping the bottom and I need to be lifted up, but my support, (i.e. friends, doctors, and most family) don't really have a clue what I am dealing with.
Best wishes and prayers to you all.
Oh, how I know that feeling!!! I've noticed the feeling of being 'on edge' and never fully relaxed comes when I'm hypo.
It's definately the little things that sometimes healthy people take for granted that we want most...to not have the 'on edge' feeling and to be completely relaxed would be nice!!
It's definately the little things that sometimes healthy people take for granted that we want most...to not have the 'on edge' feeling and to be completely relaxed would be nice!!
Hessy - I have visions of the same thing. Its kind of sad. I watch people walking and having fun or like you said just laying around watching tv. When I sit and watch tv, my body is always doing its own thing so I have to watch tv, and do other things at the same time because I can't just go into that state. I envy people that can plan on going to have fun on a weekend and expect to feel okay. It's just the LITTLE things we want so bad so we can be normal like you said.
Those are exactly the words I have struggled to say is that my body never feels like I am in a proper resting place. You know when you see family members or say your kids laying around watching tv seemingly totally relaxed and comfortable. Well, thats how I so want to feel. It doesnt matter if I take my Xanax when I have the anxiety, I never feel totally at ease. I suppose it comes from the Hashi's that hypo and hyper feeling that you get. We all want the same for each of us and ourselves. Relief of symptoms and some sort of normal feeling in our lives....HUGS....
Hessy- I too wish that someone would read this and really try to help us all. It just amazes me as I come to this site. I was honestly starting to think that maybe it is all in my head and I just have some horrible mental illness that is causing me to feel like I'm dying. It feels good to be validated at least and to know I am not alone. I really never understood the consequences of this disease. I wish I could make plans to do things, but I never know how I'll feel from one minute to the next, but the odds are pretty high for feeling bad. The last 6 months I have struggled just to go to the store. I have not been able to do anything fun or live my life normally. It's just horrible. I like you miss the good days. I feel like maybe I shouldn't have partied too much in college, or I shouldn't have been a vegetarian for so many years. I keep trying to find something I did to create this. In reality, its probably nothing I did, but it just doesn't seem fair sometimes. Then when you tell people, I don't think they understand. They don't understand the tiredness you feel. It's not a tired feeling from not getting 8 hours a sleep, but its a tiredness that consumes your whole body. Sometimes if feels impossible to move from one room to another! If its not that, for me its panic. My body is just never in a proper resting state.
Leigh- I'm so sorry you are going through this same thing. It's bad enough going through this, but even worse when you have to do so alone. It's funny in the 6 months of being extremely sick, no one really calls anymore. I've had to re-evaluate who to keep in my life. Even my own sister and some family members really don't express concern. As I'm sure you understand, it's like you have to fight this battle internally. You have to fight to get up everyday and put your best effort forth into just trying to appear normal. You are exactly right about the docs not caring. THEY just don't. They only care about their money, and they don't realize they are killing us! There has GOT to be a better way. I wish I would have went to med school. Thank you both for listening and being there. It really does make me feel sooooo much better. Huggs right back.
Leigh- I'm so sorry you are going through this same thing. It's bad enough going through this, but even worse when you have to do so alone. It's funny in the 6 months of being extremely sick, no one really calls anymore. I've had to re-evaluate who to keep in my life. Even my own sister and some family members really don't express concern. As I'm sure you understand, it's like you have to fight this battle internally. You have to fight to get up everyday and put your best effort forth into just trying to appear normal. You are exactly right about the docs not caring. THEY just don't. They only care about their money, and they don't realize they are killing us! There has GOT to be a better way. I wish I would have went to med school. Thank you both for listening and being there. It really does make me feel sooooo much better. Huggs right back.
I too feel the same hopelessness. No friends here either.. the only support i really get is from everyone here at the thyroid forum. hugggs to you all. My vitamin D is at 11.. very very low.. i tried to take the RX the dr gave me..but i threw up... felt even worse.. and thought i was going crazy. I just posted my new labs and am even more confused. I think my internal doctor just doesnt give a rats behind. I feel like i just get shuttled back and forth from one specialist to another.. when i KNOW its my thyroid.. and why wont any endo just STOP... THINK.. LISTEN.. and DO!!!!!!!! i wish i was there to give you a hug, you are not alone... not at all.. Ive never had more support than here at medhelp... huggggsssss
I just wish the all the doctors who try to treat us would read all of our posts and that way maybe they would understand better how we suffer from thyroid disease. Maybe just maybe some smart doctor could do some great research and find better ways to help. God Bless all of you. I am right there with you in the daily struggle wanting to just feel like a somewhat normal person. Sure love the good days that I have which arent as many as the bad ones.
Thanks Lori. I would just take the D, but I have this nagging feeling that my parathyroid might have caused me to have all these issues. With my pth and calcium both being in the higher end, it seems more probable then it being caused by the vitamin D deficiency. It seems rather that my d deficiency is caused from my parathyroid issues. Plus my endo is really clueless about everything and it scares me to follow his advice. I just don't want to get worse. I forwarded the results to my family doc and asked her if she could tell me what to do, but they called today and said she wants to see my whole record before she says anything. UGH. Thank you though for your words, I'm so glad you got things straightened out.
I think I'm safe to say that we've all felt that way. Being that this is a disease involving the endocrine system, it can affect your whole system and the symptoms can be numerous, and make you feel like you are dying........and you can not only feel physically ill, but mentally ill as well. I'm so sorry you are going through all this right now. I know that you are tired and giving up seems to be the easy way out, but it is now that you have to fight your hardest. Since you cannot change your Endo, my suggestion would be to make a list of symptoms, and concerns and make an appointment to discuss them all. I'd even express your concerns about the Dr. himself if I were you. Open communication should work. If he seems to be pushing you out of the office, too bad. Tell him he needs to stay and listen. He's paid to provide the care to you, don't forget that, and don't let them treat you as if you're crazy.
My suggestion is to take the vitamin D if that's what he prescribed for you. I also had quite a deficiency in D, and notice a difference since I started taking it. One other change that my Endo made was that he took me off generic Levothyroxine and put me on Synthroid, and bumped it up a little in the process. I'm not sure what helped there, but I have been feeling better for a good 3 years now. I have my moments, but that's to be expected. I think it's great that you demand tests .....keep that up for sure. However, be careful reading things online. You can get yourself in trouble, and make yourself worry.
Good luck girl.......I was lucky in that I have friends/family who stuck around and were very supportive to me. I think that's what got me through it all. If you ever feel the need to talk/vent, send me a message and I'll give you my email/phone number. This site is a great place to get information and support as well. Lots of great people on here!
My suggestion is to take the vitamin D if that's what he prescribed for you. I also had quite a deficiency in D, and notice a difference since I started taking it. One other change that my Endo made was that he took me off generic Levothyroxine and put me on Synthroid, and bumped it up a little in the process. I'm not sure what helped there, but I have been feeling better for a good 3 years now. I have my moments, but that's to be expected. I think it's great that you demand tests .....keep that up for sure. However, be careful reading things online. You can get yourself in trouble, and make yourself worry.
Good luck girl.......I was lucky in that I have friends/family who stuck around and were very supportive to me. I think that's what got me through it all. If you ever feel the need to talk/vent, send me a message and I'll give you my email/phone number. This site is a great place to get information and support as well. Lots of great people on here!
Sometimes us thyroid patients just need to vent and let it all out; it's all so frustrating and only made worse by ignorant doctors (not all doctors, just most!!).
I've had one of those hard days today as well. Just gotta hope tomorrow is a better day!
Hang in there...it will get better!!!!!
I've had one of those hard days today as well. Just gotta hope tomorrow is a better day!
Hang in there...it will get better!!!!!
Hi Danie, YES I DO! I'm feeling like you today and just posted my dilema hoping for some feedback from other members. I am totally at my wits end with all of this too and understand where you are coming from completely. It's all so complicated and trying. I just want to all to end, I have had enough of living like this.
Guess we just have to push on. Sending you my thoughts and understanding & hoping for a miricle for us both.
Take care,
Dee
Guess we just have to push on. Sending you my thoughts and understanding & hoping for a miricle for us both.
Take care,
Dee
Thank you Nat! I feel as if I'm always complaining, but I just feel like things are getting worse and worse and there is no where to go. It makes me feel better telling people that also go through it, and don't think I'm making it all up. You are right about the friends. It just ***** when you turn around and you really don't have true friends! I guess I have to stop moping though. Today was just a hard day as I'm so fed up with being sick. All I can do is try again tomorrow and hope it gets better. Thanks so much for our words.
Sorry to hear you're dealing with all this...and with a doctor who isn't the best.
I know the feeling of loosing friends because they don't wanna be around someone sick and you can't go out. But, I guess, the true friends stick around!!! I can understand you saying you're "sick of crying"...I get like that as well! I hate it, just gotta find a way to push through and hope for better days to come.
I hope that you find a way to get fixed up and feeling ok again!!! :)
I know the feeling of loosing friends because they don't wanna be around someone sick and you can't go out. But, I guess, the true friends stick around!!! I can understand you saying you're "sick of crying"...I get like that as well! I hate it, just gotta find a way to push through and hope for better days to come.
I hope that you find a way to get fixed up and feeling ok again!!! :)
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