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Old 11-11-2011, 12:50 PM   #1
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Recently diagnosed and about to lose my mind

Hello all, I'm not sure how to really begin, so I'll jump right in with the pathetic story that is my current life.

July, I believe, was the last good month I had. Mom and I were out jogging one night, as we did from time to time, which is something I've always loved especially when the moon is full. It's something you can safely do on our street and sometimes I'd even overcome my fear of the dark enough to go on my own. I was working my way up to a mile. I'd had some trouble with a feeling of paralysis and my heart stopping in my sleep back in the winter but as I live with my parents and have no job it was mostly ignored and seemed to go away on its own. I stopped worrying about it. On the night in question I had to stop jogging long before mom did and was suddenly overcome with the most horrible feeling in my chest. I was convinced I was about to have a heart attack, the pain was so bad. A few nights later, coinciding with the beginning of my period, my entire left side went numb as I lay sleeping. Odd, since I was laying on my right. In a panic I roused the house and demanded someone take me to the ER. There they declared me dehydrated and panicky, gave me Ativan and Sodium and sent me home. It was not to be my last visit.

The next night, my left side and my face began going numb. Terrified again, I took another trip to the hospital. Once again heart, bp, they even scanned my brain this time. Nothing wrong anywhere. I was finally taken to the Medical Access Center, where the physician assigned to me found the enlarged thyroid gland and started me on 25 mcg Levo. I had some hope at this point that the nights of being terrified to sleep because I stopped breathing as soon as I did were finally over. They were, and I started to get feeling back in my skin, but now things got worse.

After being on the levo for awhile, I noticed my joints hurt even more than I was used to, as I've had carpal tunnel, a bad knee and a weak ankle for several years now. I was constantly rubbing them down with Icyhot. I also developed kidney stones, which had me back at the ER as I'd never had them before and feared the extreme back pain might be the sign of a heart attack. The attending this time told me he suspected stones and to come back if the pain came back. 30 minutes after leaving, I was back and in so much pain that I threw up before finally deciding to take the painkillers I'd been perscribed. I was x-rayed and a 2 milimeter stone was found. I asked if my meds might have caused it or my thyroid, and was told it was a coincidence, both at the ER and later at the urologist they sent me to. The stone took longer to pass than it should and a few days before it did I was again at the ER, this time in an ambulance as there was no one to drive me and I'd literally been puking for 2 hours straight. Every time I tried to stand up I'd start again to the point that I was doing nothing but heaving and spitting. That was a fun trip. I already looked and felt miserable and one of the nurses felt it was his duty to make snide remarks about how often I came in. This time they found a suspected kidney infection.

So, passed the stone and finished my antibiotics only for the pain to be continuing to this very day. Same place, but when I had an IVP my kidneys were functioning well and the test showed no obstructions.

While all of this was going on, I was also beginning to get severely depressed. Constant joint pain, couldn't even think to spell words half the time when chatting with my best friend online. I didn't even really want to be chatting, but this friend lives on the other side of the country and is suicidally depressed and takes it far too personally if I can't bring myself to engage in conversation. I was distracted constantly, short with my younger sister and unable to concentrate long enough to make up a properly ridiculous response in our "Your mama" battles that we amuse ourselves with. I asked at MAC if there was something else I could be on, as I'd been researching like a mad woman at this point. I was never even able to ask about options by name, because as soon as the question was asked my doctor ran through the list of options and why she wasn't going to perscribe any of them. I started bawling when she left the room, but was composed again by the time her assistant came back with a sample of the anti-anxiety meds she wanted me on and upped my dosage to 37 mcg. I refused to take the former and felt worse on the latter. The chest pain immediately came back for a few days.

During one of my many ER visits, I was recommended to a cardiologist. The cardiologist didn't bother to do any sort of stress test on my heart, just noted that I wasn't having the pains now. Which was duh because they only happened when I tried to get even a little bit of exercise. He, too, went over a series of questions that led him to conclude that I was depressed and anxious and perscribed a month's worth of a different anti-anxiety drug. This one was supposed to not cause weight gain. I refused to take it again.

While in the ER with the kidney infection, I asked the attending for a recommendation to an endo. He, like myself, suspected the meds might be screwing me up and sent me to an internal medicine specialist. He's the one I'm seeing now, and I had really high hopes for this one as he put me on Synthroid instead, 44mcg, and after a bit I noticed my joint pain was gone. The ankle that had been so weak it literally went out from under me as I put my foot down the 3 inches from our bottom from step and sent me sprawling down didn't hurt anymore. My wrists and elbows didn't ache. My knee still hurts a bit, but that was to be expected when about 2 or 3 years ago my kneecap suddenly decided to pop out sideways as I was putting my sister to bed. That was a month ago.

This is where I am today: 50 mcg of Synthroid, still unable to exercise and chest pain the likes of which I haven't felt since my dosage of Levo went up. A few weeks ago, I felt like dancing at my sister's 16th birthday party. I danced maybe 15 minutes altogether, several long rests in between, but my energy levels never really came back up in between dances. It took 3 days for my feet to stop hurting. Less than a week ago, I had to talk my long-distance friend off a cliff via text message. Not the first time I've done it, and probably not the last. I've told him those conversations cause me actual, physical pain, but in that state he can't process that I actually care enough about him to worry that much. I believe the chest pain this time started around the same time, and it only got worse with the (extremely late) start of my period and upped dosage. I still have zero energy, back pain, and the urge to sit in the corner and cry all the time has come back. Except, that would be a bad idea because extreme laughter or tears hurts my chest. I jump out of my skin at the least little sound, which also makes the chest pain worse as my hurt starts to race. My already low libido briefly came back but is once again non-existant and, frankly, I feel barely alive anymore.

The worst thing, the one I absolutely cannot cope with, is the continued hair loss. When I first suspected it back in August, I measured and found my ponytail 4 inches around. A month later it was 3 and 1/2. I don't have the heart to check, now. I want to sob like a baby every time I have to wash, brush or help put up my sister's beautiful, thick, waist-length brown hair. It was another thing we used to have fun with. Who has the prettiest hair? I was in the lead for years because mine is golden blonde and what I have left is still long enough to sit on. Of course, in her mind hers was always prettier, and I'm afraid now she may be right. The line of my part is far wider than it used to be, and I'm getting a noticeable bald spot at the very front. It's lucky I've always collected scarves as now I can't go out without one around my head, which covers the baldness and the oiliness. I no longer look forward to hair washing day as that's when I lose the most, so it's down to every 4-5 days. I still get compliments, and I still smile and say thanks, but now those compliments send me into a downward spiral of depression for the rest of the day. I take two evening primrose oil pills a day and have for a month, but it still falls out in handfuls when brushed. I'm also on B12 and D3 for the anemia that was diagnosed at the same time as the hypothyroidism. I tried coconut oil, but that caused absolutely excrutiating chest pain even as it cleared up my brain fog, so I'm guessing I was allergic.

I've been suspecting for awhile, even more so after being told that 27 was an oddly young age to have this problem, that my adrenal glands might be out of whack, but no one will test them. Not even the doctor I had such high hopes for this time around. He says my TSH levels need to be stabilized before they do a full work up because adrenals are so hard to measure and the test is too complex. In hindsight, I was even more oddly young when I first developed this problem, as I recall my hair changing texture a few years back, but no one seems to think something else might have kickstarted the problem.

I don't really know what the point of all this was. Maybe I wanted some advice about how to argue with a doctor when you just want to burst into tears. Maybe I just wanted to vent somewhere. I feel like I get tuned out after awhile around here. I also wanted to ask if it was normal for body temperature to dip all the way to 96.8. I saw this chart that said anything fluctuating below 97.8 was adrenal related rather than thyroid.

 
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Old 11-11-2011, 09:45 PM   #2
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Re: Recently diagnosed and about to lose my mind

Hi there i read your post and boy you have been through ALOT in a short period of time.My first thought was that you need to find a new dr that will REALLY listen to you and also I think some therapy would also do you good. As far as the antidepressants I realize that ALOT of people think that they can't or won't take them because of what other people think. I was that way for awhile then I realized I had to get myself help regardless of what ANYONE thought because I was really going downhill FAST.I want you to remember something if you don't take away anything from this post I want you to know that we can NOT help how we feel AND depression IS an illness just like high blood pressure or heart diease and it DOES need to be treated. If it truly depression it will not go away on its own.I an not saying you may have to take meds for the rest of your life but it seems like you need them right now. I hope you will stay in touch with me and keep me posted on how things are going. Until next time TAKE CARE and I hope to hear from you soon.

 
Old 11-11-2011, 10:12 PM   #3
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Re: Recently diagnosed and about to lose my mind

Thank you. It isn't really the stigma of anti-depressants, as I wish my friend would take his, it's actually the weight gain. I struggled for years to get down from 180 to 155, got stuck there and now I'm back and forth constantly between 155-160, and unable to lose anymore. In fact, being unable to exercise has shot me back up a bit over 160 from time to time. I just really don't want to add to that, or potentially mess up my brain chemistry. I refused to take them because I wanted to find out for myself how a different medicine would affect me or if it was just the Levo. Using myself for a guinea pig, basically.

Sadly, finding another doctor is impossible for me as I have no insurance. And if it is partly my adrenals to blame, I don't imagine the stress of being turned down for job after job because I desperately need the money and the coverage is helping. I don't know what I'd do if mom wasn't making as much of a payment on my bills as she could so that my credit doesn't get screwed up or doctors refuse to see me.

 
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Old 11-12-2011, 03:13 PM   #4
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Re: Recently diagnosed and about to lose my mind

Thanks for writing me back.I do understand the part about not having any insurance,but is there a dr or clinic in your area that accepts patients on a sliding fee basis? I am glad you have your mom to help you out that means ALOT. As far as seeing a therapist your primary care physican could refer you to one thats how I got started with my therapy. I wish you all the best but I also hope that you can find a way to get help with this because I KNOW what it feels like to suffer without any help and it is NO fun so hopefully something will give and you will be able to get the help that you need. In the meantime I hope you will stay in touch and keep me updated on your progress.Until next time TAKE CARE and I hope to hear from you soon.

 
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Old 11-12-2011, 04:02 PM   #5
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Re: Recently diagnosed and about to lose my mind

Hello both vl2 & tinkerbell,
I hear what both of you are saying about the depression, the antidepressants, and so on.
What I'm really hearing from you, vl2, is exactly what happened to me. I was diagnosed on Oct. 19 and started levo on that day. But before I go into all of that, I want to let you know that I have been on antidepressants and anti-anxiety medication in the past. Now I generally take SAMe. I am so sensitive to thinking that how I'm feeling is related to my psychological state that I completely ignored the signs of hypothyroidism (and a torn rotator cuff) for years. When I started losing my hair last year and had migraines that stayed with me for 2 days, I chalked it up to perimenopause and anxiety - I was going through the world's most insane divorce ever. (We've since reconciled.)
At any rate, the reason my doc ran a thyroid check was because I had gained 10 pounds in a year. Not a big deal. But given my age, it was appropriate to look for a thyroid problem. On October 19, when I started the levo, I knew I lived in a stressful environment but also knew that seeing a therapist, taking the SAMe, doing yoga, walking -- all of that was designed to keep the stress tolerable. And it was.
I was, however, having a lot of joint pain and muscle pain - hadn't read up yet on hypothyroidism. And, amazingly, I was having chest pain, just like you, vl2. It wasn't really by the heart, but in the general area. Figured, I'm nearly 60, I'm bound to have weird little pains. I was given pain medication and muscle relaxers. (Bad bad choice)
I was also very very excited to go on the levo because I thought it would make me feel good. Started on Oct. 19.
On Nov. 4, I woke up - my eyes were puffy, my ankles and feet were swollen and discolored, I had a tremor on my right side, primarily affecting my hand. And I couldn't read (I'm an editor) or write well. The words kept going around; I couldn't concentrate. And I would be irritable one moment and sobbing the next.
I had a major depression in 1990, so I am familiar with what those feel like. This episode had similar symptoms, but it hadn't built the way the depression had in 1990; it had no precipitating factor. Also by Nov. 4, I had gained 7 pounds.
When I told the doctor's office who relayed the message, I was told the drug was easily tolerated. That particular response does trigger my own issues where I feel invisible, and I got probably too angry in response to the provocation, but no sooner was I angry, then I'd cry. The doc told me to stay on the med but told me to see Urgent Care. The doc there told me it was the pain med and I should stop and since the only thing the levo did that was positive was eradicate the joint pain, stopping that med was easy. I tried taking it in the morning instead of at night before I went to bed.
It got worse. I checked these boards, another board to see if anyone had these kinds of issues.
But then on Monday, Nov. 7, after I'd taken the levo, for the first time in my entire life, I felt suicidal. I did not want to be alive if this was what I was going to feel like.
I stopped the levo on Nov. 8. It's working its way out of my system. I am still emotionally labile, but I don't feel as foggy, I have some ability to concentrate, and I have hope that I'll find the right med.
But there is no one - no doctor or nurse or anyone - who will convince me that I had a very bad reaction to the levo (the generic) and that I should not be on that.
The combination for me of being so foggy so I can't concentrate and that emotionally depleted and depressed is deadly. The way I have been able to handle depression in the past, and the way I handled it in 1990 was to be able to talk to myself, to remind myself that emotions are temporal, they'll pass. Without that part of my brain working... I don't want to die. I don't want to kill myself. But that med triggered that in me, and no med I have ever had in the past did that.
I do think that for some people, it is the med. I have read that Synthyroid is better than the generic. I don't know if that's true. I've also read about Armour, and I understand some docs are reluctant to prescribe that.
Now that I've got my ability to think back, I do know that when I go into the new docs, I will go in as an informed patient and will not simply grab whatever they prescribe.
In closing, from what I've been told by friends and others, my reaction to the generic med was unusual, and when I looked up my side effects - some of what I had put me in the less than 1%. And I'm also not blaming my original doctor. She prescribed a standard treatment and although she told me to stay on the med, I went off. I told her I went off but that I was going to an endocrinologist, and she was okay with that.
Sorry if I went on here, but what I need - and what I assume most people who are grappling with any kind of similar issue - is a medical professional who believes that I know my body, and I know my reaction to something. Sorry, I kind of got carried away.

 
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Old 11-12-2011, 05:43 PM   #6
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Re: Recently diagnosed and about to lose my mind

MAC does, but that's the place I'm trying to avoid since that's where I was assigned the doctor who made me cry. I really don't know if she was looking down her nose at me or just trying to keep costs down, but she insisted the Levo was working fine, I was just depressed and that Synthroid wouldn't change a thing. Everyone else seems to be of a different opinion, as does my own body.

I discovered today that in addition to feeling like my sister describes her asthma as feeling, I can't really summon the stamina for even the most low level stretches anymore. I did get weight for my adrenal theory, though. In my research, I found a page that mentioned body temperature dropping after exercise could be a sign of adrenal failure. Mine was all the way down to 95.1.

Goodness, I do complain a lot. I don't suppose you know if any members here have ever mentioned any good doctors in the north Georgia area? I can't afford a long commute.

 
Old 11-12-2011, 08:59 PM   #7
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Exclamation Re: Recently diagnosed and about to lose my mind

I am soooooo sorry that the drs are like this with you! my heart was breaking reading ur last few yrs. Ok U take what you want for what I have to say, I am new to hypo myself, still struggling with prbs but I have dont reading as much as I can on all this. so I have few things in mind If I was you that I would be doing and to he real with you I am doing this myself.
1.) get rid of that dr just b/c he is Endo or anything like that dont mean they know their stuff like the claim. call dr offices and in most cases the nurse/recpt. will tell you if the dr's in the office will take the time u need. I have had PA and they I know in most cases will.
2.) the adrenal test is not all that involved its a 24hr saliva test and will not waver if the TSH is off.. the reason ur TSH is off still is b/c your adrenal glands are not working right. so those need to work in order for the thyroid med to work the best.
3.) also get your hormone levels check that as well will not bother or waiver b/c of TSH being off. that is a blood test (full hormone panel) .
4.) go to the website "Stop The Thyroid Madness" they have face book page also a book.
I hope I dont upset you but I am too dealing with similar issues my dr told me I had this and sent me out the door. We have to take a stand for our health.
also the dr's go by yr TSH but what about the rest of the thyroid panel there is freeT3, freeT4, Rt3, TPO but you can get all these off the website I gave you too. I go back to the dr dec 9 then I seen new dr jan 23 Im not playing or taken no for an answer. I feel I have gotten way worse in the 2 week on Levothyroxine than I was before.
Best wishes and all the prayers and hugs I can give. I understand Nicole

 
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Old 11-13-2011, 03:21 PM   #8
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Re: Recently diagnosed and about to lose my mind

CorralesNM, we are definitely in similar situations, except that I had never in my life dealt with any clinical depression and wouldn't have recognized the signs. But I also, for the first time in my life, began thinking seriously about killing myself after a few weeks on the Levo. I had the migraines, too, but thought they might have either been caused by putting up my hair (which is when they sometimes happened), or that my astigmatism might've gotten worse. Did you also have a constant sort of pinching, painful numbness in your left arm? Despite all scans always coming back normal, I can't help but worry that there's something they're not seeing since it pounds like crazy when I try to get any exercise.

She Emerges: No, you didn't offend me. I found an endo in my area, as the doctor I'm currently seeing isn't, but unless I can get a recommendation from somewhere I can't get in. My friend, bless his heart, he upsets me so terribly sometimes, but when he found out I was looking he started searching for doctors in the area for me. And I'm beginning to have stronger and stronger suspicions that my adrenals are faulty and not just because the two problems go hand in hand.

Going by the Metabolic Symptoms Matrix, I fall a lot into the category of "mixed" symptoms, both thyroid and adrenal, but there are several that I check off purely in the adrenal category. On Body type, I've always struggled to lose weight, but now, despite having basically no metabolism and hardly getting any exercise for 5 months, I discovered this morning I'd only gained about 2 pounds. I'm a bit worried that I'm starting to fall into the "severe: thin, can't gain weight category".

I've also got a very obvious white ring around my mouth. I'm pale, but you can still definitely tell it's there. I've had it for a few years now, or at least I just noticed it a few years ago and just thought I had the world's worst skin.

My knee that I mentioned in the first post, I wasn't doing anything strenuous at the time or bent into any odd position. Mom and I were walking a lot that year, as I'd decided to buckle down and get serious about losing weight and we'd worked our way up to climbing the hill near our street, but unless that weakened it, I was literally doing nothing. I was bending forward, when my knee just...slid sideways.

My body temperature is generally lower than 97.8. I mentioned in my last post that I tried to exercise to see what would happen and that my temperature dropped all the way to 95.1. After resting for a few hours, it was back up to 97.1. For the past few years, I've been getting into quite a lot of trouble for turning the heaters up and running up the bill, as in the middle of winter I will still shake and freeze while bundled up.

I absolutely cannot tolerate even a little bit of stress. I panic, I meltdown entirely and if I'm in an emotionally charged situation I start trembling all over. I read elsewhere that it was also a sign of an adrenal problem but can't remember where I saw it. I feel all the time like I'm going to drop dead at any moment. At night I have to distract myself to sleep by reading. If I just lay down and try to drift off, I start to have an anxiety attack that I have to talk myself out of by reminding myself that if I didn't die that day I'm unlikely to do it just because I went to sleep. I've started sleeping with lights on and wearing things that I'd be ok with having my dead body found wearing. Even in the summer, when it was the hottest and I used to just sleep in my underwear, I started wearing short and a tanktop so that I wouldn't be found naked. For awhile, until it got too cold, I made my sister sleep in the room with me so I wouldn't technically die alone.

I have no energy to do anything, not even clean. There have been so many arguments here about the state my bathroom had gotten in, as my cats' litterbox was in there, but while I would do my best to keep that clean -indeed, taking care of them is about the only thing I can drag myself to do- there was dirty sand dragged all over the floor that I just didn't feel like sweeping up. I used to change it at least once a week and give the whole room a sweep and mop. If mom didn't keep at me to clean things up a bit sometimes, I'd just sleep all day while garbage and filth piled up around me. I'm grossed out by it, but I just can't bring myself to care, anymore. It seems like too much work.

I can't stand still. If we're walking around and I start to get tired, I have to sit because just standing makes my back uncomfortable. If there's nowhere to sit, I try to find something to prop on, or just plop myself down in the floor.

Sometimes, I absolutely crave salty foods, and I'm not even a big fan of salt since I grew up on mom's cooking and she hardly used it. Once I start eating something sugary, I can't stop until my stomach hurts, and there are times when I could eat several baked potatoes in a row if my stomach would let me.

 
Old 11-13-2011, 03:33 PM   #9
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Re: Recently diagnosed and about to lose my mind

I am one of those people who can't take the generic meds. I've been using Armour and have been pleased with it. The pharmacy mistakenly filled it with the generic Armour and I immediately had a bad reaction. Just thought I'd share some personal experience in this area.
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Old 11-14-2011, 09:39 AM   #10
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Re: Recently diagnosed and about to lose my mind

Alright, I found out today that I'm currently at 2.02 TSH, but I'm still having trouble breathing and can't do anything.

 
Old 11-14-2011, 06:44 PM   #11
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Re: Recently diagnosed and about to lose my mind

Quote:
Originally Posted by vl2 View Post
Alright, I found out today that I'm currently at 2.02 TSH, but I'm still having trouble breathing and can't do anything.
I would have to say its adrenal sorry ur still suffering

 
Old 11-17-2011, 02:37 PM   #12
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Re: Recently diagnosed and about to lose my mind

Thank you. I have to go to the ladies' doctor sometime in the next couple weeks, maybe I can get someone there to recommend me for a full hormone check since my regular doctor won't. I'm becoming way too familiar with how my sister says her asthma attacks feel.

 
Old 11-17-2011, 05:44 PM   #13
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Re: Recently diagnosed and about to lose my mind

I don't know what the board's stance is on dessicated thyroid hormone, but maybe you can get a prescription for that? I know Armour is not what is used to be supposedly, but isn't there a Canadian supplier that provides dessicated hormone under the old formula?

 
Old 11-18-2011, 08:24 AM   #14
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Re: Recently diagnosed and about to lose my mind

Ok, fun new symptom just developed in the last few days. I'm near-sighted/astigmatism, so the feeling of eye strain is nothing new to me as my perscription gets stronger practically every year. But this is something I haven't felt since I stopped wearing contacts. I'm not sure how to describe it. The feeling is like someone squeezing my eyeballs, but at the same time forcing them to remain wide open. They don't feel gritty, as I just found out Graves would cause, and they don't seem to be inflamed or anything, just strangely dry no matter how much I blink.

 
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