posted 12-30-2002 11:55 AM            

[This message has been edited by marsv63 (edited 12-30-2002).]

posted 01-06-2003 06:13 AM            

Flash forward to today - 44 years old. In the meantime, I developed asthma, which has caused me some minor problems over the years.

Almost a year ago, my gynecologist discovered an enlargement of the left side of my thyroid, He suggested blood tests and an ultrasound. Unfortunately, I lost work after 9/11 and my insurance, so I could not afford any testing, and I had no symptoms, so I did nothing.

As soon as it started to get warm in April, the symptoms kicked in. The most alarming ones were the sudden, rapid heartbeat and heat intolerance. I began to panic when this happened, and to panic that it would. Thinking that it was asthma, I over-medicated myself with my inhalers and drugs, making it worse. I was working by now and made trips to the ER for unspecified symptoms ranging from painful, sudden UTIs to palpitations. I endured a very hot and uncomfortable summer, made worse by suddenly very heavy menstrual bleeding and periods that never seemed to end. I had 5 UTIs last year. I made it through mid-October, and then had to stop working. Failing to get any health insurance through work, I was able to have some blood tests done at an arts organization; the tests indicated that I was mildly hyperthyroid with elevated T3, and anemic from my heavy periods. I finally bought some insurance and was able to see a doctor in November, eight months afterthe first symptom appeared. By this time, I was in a highly emotional state. I met my new doctors in panic mode and never got off on the right foot with my PCP, who has no time for me, so I have to find a new one. I became a professional patient and was diagnosed with Plummer's syndrome - a toxic hot nodule that had taken over thyroid hormone production. I had all of the blood tests, a sonogram and an uptake scan, but no FNA.

I abandoned my first endo, who was a relentless promoter of nuclear medicine. I lost faith in my second endo, who seemed too timid and disorganized. They offered as solutions RAI or surgery. I did my homework. I did not want to go on Tap or PTU for an extended period, and definitely didn't want RAI, so I chose surgery as it seemed like the fastest way to feel better. I found a wonderful surgeon, and on December 13, had the left lobe removed. There was no cancer found. It went very well and I don't regret it. I'm trying to build up my system with vitamins and supplements, rest, and mind-body work.

Before my surgery, I was put on a calcium channel-blocker to lower my heart rate, and Klonopin for my anxiety, which I still take when I need it. The anxiety is still with me, but my heart rate is down. I was on Tapazole for two weeks before the surgery but felt ill from it, so I am glad that I did not choose anti-thyroid drugs, which no one felt were appropriate for my nodule anyway.

I saw a third endo last Thursday for my first post-surgery thyroid function test. I am in limbo for a little while longer, but I feel much better, only tired. I sometimes feel a little hypo, sometimes normal, and in the past few days, slighly hyper again. Have not yet started to exercise, but I walk. Not back to work yet.

I had a very emotional and stressful year due to work situation, finances, and relationship trauma. It was the latter, I think, that really kick-started my symptoms. I have an ovarian dermoid cyst and some recently discovered fibroids that explain the heavy bleeding, so I have to deal with these problems next. The gyno did not want to deal with anything until I recovered from the surgery. My period came early a week after my surgery, and it was not as heavy, so perhaps the surgery has had some positive effect on the fibroids.

It feels as if it has been a very long time on this road, but after reading these moving stories, I see that I have not been suffering nearly as much as many on this board. I am so angry to read about the low level of care that so many have received! I feel as if I want to change careers and become a thyroid patient advocate!

Sorry for the length of this post. I hope it helps someone. I wish everyone a healthier and happier 2003.....

Bluecab

posted 01-31-2003 01:03 AM            

(Maniacal laughter followed by heavy snorting)

I was exhausted from being hyper and still have not recovered my mojo, and am not back at work yet tho I will have to be, $oon. I am terribly out of shape and strenuous activity of any kind sends my heart rate zooming up. I liked it when my bpms were in the high 70s right after surgery but now they hover at 80 while idle and can hit 100, too. I'm not sure why this is happening but it tells me that my levels are still out of whack and that I am under-conditioned after three months spent lying down or sitting on my butt. I have to lose about 40 pounds now but have stayed the same weight as I was (actually lost a few pounds) since just before surgery, when I gained 10 from being on Verapamil, Tapazole and the iodine drops. I only lost 10 pounds while hyper but I was also eating everything in sight.

Three weeks after surgery, my blood tests showed me to be slightly hypo. I insisted on another test a week later as I was feeling crappy; my TSH jumped from 3.75 to 5.89 (it was 0.01 pre-surgery). T4 and T3 in low normal range. I insisted that my endo put me on replacement hormone and I have been on .025 Synthroid for two weeks now. I feel a bit better. As of a week ago, my TSH is back to 3.71. I expect that it will drop some more. I have another appt with the endo next week, and will just have to see what happens.

Endo #3 seems conservative in his approach but I will stick with him a bit longer. I did fire PCP #1 and am on PCP #2 but I am not overjoyed with him, either. I am a much more anxious person since all of this began and I am rather obsessed with the whole illness thing. I really have to watch myself or I will prattle on endlessly to anyone about my health problems (as I am doing now) - something that I once ridiculed in others. Things have certainly come full-circle.

The two things that have saved me are these boards, the one at About and graves-support on yahoo. I don't have graves but they welcomed me and give good advice. The other is seeing a good therapist. Helps keep things in perspective, and she helps to motivate me. My support system is not what it could be, and in times of real distress I have regularly called Samaritans, which I recommend to anyone else who is living alone and dealing with allof this crap without a network of people around. At 3 AM, it's nice to know that there is someone to talk to.

But I do feel a thousand times better than I did at my most hyper. The surgery was the way to go. I had a follow-up with my surgeon yesterday and he was thrilled with how his handiwork, my tiny cut, is healing. I had no reaction to the anesthesia (unless my tiredness 7 weeks after is part of it), no nausea, and no complications of any kind. I take extra iron for my anemia, antioxidants, cal/mag, supplements w/o iodine, black currant oil in the hope that the scars from my scratched-up hives and rashes will go away, Vitamin C - and will probably introduce other supplements as time goes on. I have started eating meat (anemia) and more chicken, grains, beans, veggies, salads, fruits, cut back on dairy and when I do have it, it's organic, as are the meat and chicken and everything else, with a few exceptions. It's not always possible as I have to shop in neighborhoods that I don't live in to achieve this. Bummer.

I'm still on a low-iodine diet but I allow myself organic eggs and the occasional commercially baked muffin or bread (for the iodine!). I have not yet gone back to eating fish and have to solve the omega-oil thing. I so loved shrimp but think that this thyroid thing has ruined my taste for it now, and my beloved take-out Chinese habit is a thing of the past for sure.

Changing my eating habits and eating less generally due to lower appeite (thank you, Mr. Hypo) has also made a world of difference. When I was hyper I went on a low-iodine diet and felt so much better, and I'm continuing it. I stopped all caffeine and alcohol, and most sugar, but allow myself the occasional chocolate or dessert. I try to look at it as a chance to correct a lifetime of poor eating and poor health choices - to get myself back to wellness by treating the whole body. That is the one good thing that I can hold on to here. Now if I could only manage the exercise thing. I started yoga last summer and will try to do a bit of that along with more walking as I ease more activity into my schedule.

Hoping that we all will feel better soon---

Bluecab

2/12/03 - update

I'm finally feeling better! I started adding Selenium to my supplement regimen and felt an immediate improvement to my energy level and mood. I have been on meds for a month now. My T4 to T3 conversion was poor and maybe the selenium has helped. I tried Selenium 200 mcg for 2 days but it was too srong and my hyper symptoms returned. So I am eating 4 Brazil nuts a day and that seems to be a lower dose without giving me the rapid heartrate and jitteriness that I was feeling. Ihope this helps someone else. Just make sure that your T3 is not too high before adding selenium.

posted 02-12-2003 06:55 PM            

I don't know how long I've had hypothyroidism, but I was diagnosed November 2002. I started developing symptoms 10 years ago after my youngest son was born. I thought that I had chronic fatigue and possibly liver problems since I am positive for hepatitis C, although my liver function tests are always normal. My main complaints were lack of energy and swelling. Other symptoms that I had were dry skin, weight gain and unable to keep weight off, brain fog, vision problems aching joints and asthma.

Last summer I became extremely depressed for no good reason. I was also at this time having trouble processing my thoughts, which I guess would be called trouble concentrating. I was also very tired and gained 10 pounds. I started taking diet pills to give me enough energy to get things done. I didn't loose any weight, but stopped gaining. I also started becoming a little obsessive compulsive, working on insignificant projects for hours, while neglecting important tasks. In October and November I was very busy and stressed out. I think this led to me becoming very ill. I started crying all the time over nothing and my face started swelling. My eyelids were so swollen that my vision was effected. I looked horrible. And my eyes burned and stayed red.

One morning after I arrived at school I had trouble climbing the stairs. I was suddenly exhausted. When I got home I checked my blood pressure and it was 180/110. I went to the doctor and kept feeling like I was going to die. My blood pressure was 180/120. They put me on clonidine and paxil. Two days later they called and told me that I had "no thyroid" and called me in synthroid 150. When I started taking the synthroid my blood pressure went back up and stayed up and I started having almost continuous panic attacks. I also gained 5 pounds over night. This lasted for 3 days until I fainted early one morning. The next day I was admitted into the hospital and stayed for 3 days. My endocrinologist said that I was almost in myxedema coma. I was taken off clonidine and paxil and put on synthroid 100 and cytomel 25 and norvasc. I had a low sodium and liver enzymes were abnormal (from thyroid condition). I started feeling better when I was put on the cytomel. I also lost 12 pounds in 3 days. When admitted into the hospital my Free T3 was 0.75 (1.45-3.48) and Free T4 was 0.56 (0.81-1.61).

For the next 2 weeks I began feeling better daily although I seemed to be somewhat hyper. Then I started having problems with my memory and concentration. It was so bad that I failed my final exams in my 2 computer programming courses. And that is not like me at all, I am a perfectionist when it comes to school. My doctor cut my cytomel dose in half at the end of December and then my mind started improving. I don't know if that had anything to do with it or not, but he told me that too much cytomel can cause problems with concentration and memory. I was so relieved when my mind started improving, then my hair started falling out. It fell out for about 3 weeks. Now it is Feb. and I believe it is not falling out as much. I do have new hair growing in though.

Now I am on synthroid 125 and cytomel 12.5. I only had to take the norvasc for about 1 month. My blood pressure is back to normal, around 120/70. For the last 2 weeks I have felt really good. I have lots of energy, can think clearly again, my mood is stable and life is generally just great. Here are my latest labs: T4F 1.5 (0.8-2.7) and T3F 2.1 (1.7-3.7).

This board has really helped me alot during this illness and recovery. Thank you to everyone who posts here, you have all been a great encouragement and comfort to me. May God bless all of you!

posted 03-11-2003 01:14 AM            

I am thankful that my doctor did test me for this and gave me meds so quickly (UNITRHOID is what I am on). Especially after reading these stories. He did say tho that if the hairloss doesn't stop then he will send me to a dermatologist. I

I also was on L.A. Weightloss for a little over 9 months and I did read that fad diets could also be a cause of hair loss depending on how much protein, etc. and I am wondering if maybe there could be something within one of the products from la that could be causing this hair loss.

I am a total wreck over this and the more that falls out of course the more self conscious I feel. I do believe that bald is beautiful, but ONLY ON SOME, hehe - i do try to stay high on spirt but it is very hard. I thought to buy a wig but then of course people will notice something very different.

I am hoping to get some support. I do notice this is a very old post but hopefully the accounts still exist so that I can get some help.

posted 03-12-2003 08:12 PM            

thankyou SO much for tetlling me what you've been thru' -- i WEPT when i read your list of symptoms -- i was diagnosed with cfs in 1988, and altho' various anti-depressants have helped me over the years, i've been feeling a signficant loss of energy over the past three years, and have only just cottoned onto what looks like might be (and have been) my problem ... and i have taken dilantin for seizure disorder for the past four years, combined with clobazam last september (which both affect the thyroid), and NO ONE thought to test it, or if they did the test just came back "normal" (1.35) and no one told me actual numbers 'til i asked on friday ...

all my symptoms match yours except for the shooting pain ...

posted 03-19-2003 11:18 PM            

Four years later, shortly after my 21st birthday, I began to fail emotionally and psychologically all over again. I started to notice that I was constantly freezing cold and began to notice strange obsessive thoughts running through my head constantly. I went back in for another TSH test, but it came back "normal" once again. During this time, my boyfriend had broken up with me and I had absolutely no coping mechanisms to speak of. For someone who has always prided herself on her ability to pick herself up by the bootstraps and get on with life, this was disturbing to me. Try as hard as I might, I couldn't claw my way out of the depression and anxiety from the break-up. The fact that my TSH was again normal left me with only one option: That I was slowly losing my mind. Got another prescription for Prozac and took it for about 3 days before tossing it down the sink. I just knew it wasn't what I needed.

Again I managed to struggle through the darkest period of my life that far. I was definitely not doing well. I began to notice strange physical changes: My skin, which had always been dry, now began to flake and pill. I moisturized day and night and took baths in oatmeal to try and help my skin, but nothing worked. I also noticed a that a patch of hair on my head had become scraggly and dry. I thought this was because I had suffered a bad sunburn a few weeks earlier, but now I realize that it was thyroid related. That patch never went away, no matter how much I cut my hair, or conditioned it. It's still with me, even now.

Another disturbing thing occured right around this time: I dropped 14lbs in two weeks. The doctor believed I was bulemic and lying to him about it. I thought that maybe I had just forgotten to eat because of the break-up. I am 4'11 and at the time, I had weighed 97lbs since age 16, and had never gained nor lost anything in that period of time. Dropping that much weight, so quickly, was totally unlike me. A year later, however, I gained it back and then some in the space of a month!

That following year, 2000, I had emergency surgery to treat a ruptured ovarian cyst on my right ovary. During that surgery, the doctor found endometriosis. I was placed on the birth control pill and told to expect to stay on it for at least the next 5-7 years. I didn't know that endometriosis is often associated with hypothyroidism in women and ovarian cysts are another by product of hypo. I thought I was getting back to normal after the surgery. I met a wonderful man who is now my fiance and I got back in school to finish my degree which had been postponed due to my trouble with anxiety and depression. In the fall of 2002 it all fell apart once again. This time, a diagnosis was made: Obsessive-Compulsive Disorder. I was given more Prozac and enrolled in behavior therapy.

More blood tests were run and all came back "normal" as they always have. I felt I had just been given a death sentence. I knew I fit the OCD profile, but I also knew that I fit the hypothyroid profile even more. However, without a high TSH, there was no way in hell my doctors would listen to me.

Finally, out of bordem more than anything, I decided to have my thyroid tested once more at the end of February 2003. The result? My TSH was now at 4.1, high enough to put me over the new AACE standard! I felt so vindicated, but predictably, my doctors didn't listen to me. According to them, my TSH was normal, end of story.

But thanks to this board I got in touch with a clinic that specializes in women's hormonal health and I'm now officially being treated for hypothyroidism (possibly Hashi's, but I won't know for sure for a little while longer). It's not cheap, but I'm worth it.

To anyone reading this who identifies with my story, just don't give up. Be proactive, find a doctor that will treat you and not your lab results. Educate yourself. Keep fighting for your right to be healthy! I know it's hard when you barely have energy to get through the day...

Hang in there!

posted 03-20-2003 12:03 PM            

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posted 03-24-2003 05:40 PM            

I went to my doctor last December for a regular check-up, feeling OK, no overt symptoms. My doc did a regular blood test and the TSH came back high (9) and the T4 fairly low. She then got me back for another test and that TSH came back 5.3 ("normal") so she said let's wait and see. I went back in February and she did another test and that one was 8 so she sent me to an endo. He tested and the TSH came in at 13.5. (I freaked out, but since reading these boards I see that it can go way higher than that.)

So when I look at the list of typical symptoms, I can see I've had at least some one them:
. fatigue; I can easily sleep 10 hours straight and not feel particularly refreshed afterwards. And I like lying on the sofa and watching TV way more than I wish I did.
. I seem to shed a lot of hair and obsessively check my hairline to see if it's receding (don't think so, though it does seem thinner there).
. I feel the cold more than other people and feel shivery anywhere below about 72 degrees.
. I've had tingling in hands and feet and a kind of vague numbness on my face (cheeks) from time to time for about 3 years.
. About 3 years ago I started having difficulty swallowing every now and then - like my throat had forgotten how to do it and I had to concentrate to get food down - terrible feeling. I'd often miss the timing and feel like I was going to choke. This really freaked me out. I googled the symptoms online (sometimes a very scary thing to do!) and MS came up. I was so terrified I had it I didn't dare go to the doctor. I just didn't want to know). Then it just seemed to go away after a year or so, and I wondered if it was just some kind of nervous thing, a choking phobia (I had nearly joked on some candy as a kid).

I've always had periods of depression/anxiety in my life that I ascribed to just "life," an easily depressive personality, and a string of bad relationships, but it got really bad about 7 or 8 years ago after a particularly emotionally gruelling relationship ended - I was really in a dark pit, staying in bed all weekend, weeping every day, feeling so pathetic I didn't even really confide in my friends. I thought if I didn't do something I'd completely go under. I wracked my brains for ages trying to think of something to do that would make me feel better, and I decided to make a complete break from my situation and environment, and move countries. The first thing I did was I got fit, lost about 20 pounds. Then I moved to NYC (I'm Australian). That move really snapped me out of my depression. I was too busy just trying to pull it off, set myself up and stay above water, and just very amazed to be in a city I'd always dreamed about, that I stopped wallowing in self-pity. When I look back now I can't believe how within months I was able to haul myself out of bed and bring myself over here to a high-stress job/environment. But it worked (though I still get very down sometimes, but never as bad as I was).

Now, in light of my diagnosis, I look back and wonder, God, could that have all been thyroid-related? I never had blood tests back then, and when I went to my old doctor about the depression, he just sent me to a shrink who wanted to put me on medication, which I refused to do, and so I just did some pretty unhelpful talk therapy with him. So I guess all I can do now is wonder, and ponder that if I was hypothyroid back then and medicated, maybe I wouldn't have ever ended up in NYC. Hmmm.

Anyway, the last symptom and one I'm very relieved to know now what it is - was a lump in my throat I started noticing last year. I became convinced it was throat cancer as I smoke sometimes, but as usual was too terrified to get it checked out by the doctor. It seemed to come and go and wasn't painful and didn't seem to be growing, which I figured if it was cancer it would've (I guess I'll be one of those people doctors say to: "If only we'd caught it earlier, we could've saved you ...). So it's a huge relief to know it was my thyroid enlarged, and not a nasty carcinoma. I had a nerve-wracking sonogram a couple of weeks to confirm that.

Now I'm very curious to see if the Synthroid has any effect on my mental state - if I'll start seeing the glass as half full instead of half empty, as I've done most of my life. I'm starting to wonder, What is feeling normal, anyway? Did I ever really feel normal?

posted 04-04-2003 11:06 AM            

My story is similiar to lots of others. In late November 2002, I was starting to feel really bad. I was so tired, bone tired, that I knew something was wrong. But more than that, and scarier even, was the fact that mentally I thought I was losing it. People would be talking to me, but I couldn't concentrate on what they were saying. I felt so detached from everyone. My mind would wander & I began having strange thoughts. I thought I was going crazy & with three small daughters to take care of, I was scared to death. I have always been a dependable, head-on-straight kind of person, so I really can't describe how terrified I was. I went to the dr. and she sent me for blood work. She called me back the next day to come in immediately because my "thyroid was seriously out of whack". I just started crying, I was so relieved to know what was wrong, and thanking God that it was curable. The funny thing is that my husband is also hypothyroid, but he didn't have any symptoms, it was just detected through routine bloodwork. He is on 88 mcgs of levoxyl & doing fine, but my having a thyroid condition never occured to me. Although, looking back I can see many more symptoms that I had of hypothyroidism. My first TSH test was 195.48 and I was started on 50mcg of Synthroid. Six weeks later I was tested again and I was at 48, & my Synthroid went up to 75mcg. Tested again & came in at 32, Synthroid now up to 100mcg. Just went for 6 week test yesterday & looking forward to having the medication increased.

Thank God that the mental fogginess went away almost immediately. I still feel bad, though better than last fall, but bad. I've had panic attacks, strange muscle pains, a full feeling in my throat, tiredness & cold all the time. I am looking forward to feeling better & better. I just want to thank you all for posting your stories. It helps me to know that I'm not alone. Most people have no idea how bad the symptoms of hypothyroidism can be. I've actually had some friends tell me that they wish they were hypothyroid so that they could lose some weight!

posted 04-13-2003 11:40 PM            

I am cold all the time. So is my mom.

I can easily easily easily sleep 16 plus hours a day.

I have lost clumps of hair for years.

I have memory loss and sometimes I feel I am in some alternate reality. Like I space out.

my feet tingle sometimes.

posted 05-29-2003 07:57 PM            

Thay found I had 6 toxic nodules(goiters) and one was 2.5".I should get them out in case they were cancer.I pondered that idea for a year and then finnally had it all out monday.
Now I have to deal with life being hypo,possibly and find the correct doseage and meds.

This disease sucks.It sucks the life out of me.I was tired and worn out and slightly over weight as a Hyper..whats in store as a Hypo?
I believe this disease has ALOT to do with diet.ALOT to do with carbohydrates/excersise and smoking.
At least for me-these are my findings.Calcium/mag has helped alot with mood/sleeping.
I wish everyone here the best of luck and I think we should TRY to keep a positive and proactive attitude about OUR bodies and OUR health. Dont believe everything you hear.
****Thanks and peace to you all****

posted 06-26-2003 01:15 AM            

When I was 18 my hair stylist said I should have my Thyroid checked. I ignored her.

Around age 27 I began to gain weight (must be my metabolism that caused me to gain 32 pounds) and I began to sleep more but I attributed that to my new job.

My hands and feet would tingle, I thought I was dehydrated.
I have no period since I was 25 - I thought it was a blessing.
I am always cold, my temp is around 97.2
I began to have extreme pain in my fingers and hands, I thought it was from typing on the computer too much.
I have been on anti depressants, anti anxiety and benzos for panic attacks since 2000.
I have gotten to the point where I just can't think and I forget simple words. I thought i was just stressed.
I have no sex drive.
My boyfriend said I started snoring about a year ago. I have NEVER snored.
And my allergies. I am on a million meds for that too.
My choletrol was 264 (I think) I figured it was the foods I ate.
My lips started peeling at age 25 and they have never stopped. I gave up trying to figure out what caused that.

Oh well thank God I found this post. Thank God.

posted 08-07-2003 06:22 PM            

I was finally DX about 8 weeks ago give or take. I have hashimoto's Sound more like something I would order froma japaness resturant:-)
Anyway, I have to admit the things I hate about this

Being tired at all time
Forgetting the simplest of things
My hair has gone very grey
Aches and pains
dry skin I have tried bathing in cooking oil to make skin less dry does work but the bath gets a bit yucky thou
people saying there is nothing wrong with me it's all in my mind Ha what mind I think so there fore I forget
Having my hubby and kids worry about me all the time I don't want them to be held back on things because of me
Not being able to drive to much brain fog not safe
Having to rely on people to take me places
Losing my independance
losing me I am not who I was

But I WILL get better (not cured) come hell or high water :-)

posted 08-07-2003 11:49 PM            

My mom has thyroid disease so she had the foresight to get me tested when I was young- at about 7. I have hashimoto's and have been taking synthroid ever since. The doc had me on every dose imaginable until "after puberty" as he kept saying. He also said my weight would equalize after puberty...never did. At least the dose evened out. I don't feel cold on hot days anymore. My hair doesn't fall out much anymore. Sometimes I feel a little sluggish but having ADD kind of makes up for it if you know what I mean. I've never had any sort of menstrual cycle on my own but bcp are a godsend.