View Full Version : New symtoms wondering if you've had them...

05-29-2005, 12:52 AM
Okay so quick run down of my case. It started 10 years ago @13 years old...Got Diagnosed a few years later with mild kidney involvement basically just rashes and pain, lots of pain.

Fast forward a few years started getting blinding headaches...like got the drill out to ease the pain headaches. The located brain swelling and lesions was in the hosp for awhile on chemo to help. It did basically still have the headaches at least once a week and numbness but much less.

I have had blood clots from the anticardiolipid antibody a few times.

NOW I have Hashimotos...I had been as close to remission as I get sence I got married in August. Till a few months ago when I just started to feel awful.

So the question is who's got it and how do you feel. I think I hate the meds I'm on 300 of levoxyl to start....seems high to me...but they said my thyroid basically shut off in a matter of weeks so it's a high dose to counter act any more damage. I've read that I shouldn't take this and my blood thinner but the doc didn't seem worried. Not sure I trust him though. I pretty much haven't slept sence I started and I'm not used to that.

I would love some feedback I'm pretty worried. Thank you so much.

06-03-2005, 11:21 PM
Hi Betsybaily :lol:
I'm sorry that you did not get a response to your question. I guess no one on this forum suffers from Hashimoto's Disease.
Here is some information that I found about the disorder. I hope that it helps you:
Hashimoto's disease is a problem with your thyroid gland located in your neck. The thyroid gland makes hormones that control how your body uses energy. Your thyroid is a butterfly-shaped gland located at the base of your neck, just below your Adam's apple. Although it weighs less than an ounce, the thyroid gland has an enormous effect on your health. Your thyroid is part of the endocrine system, which is made up of several glands and tissues that produce hormones. These chemical messengers coordinate many of your body's activities, from digestion to metabolism to reproduction.
When you have Hashimoto's disease, your immune system begins to attack your thyroid gland, causing it to become swollen and irritated. When this happens, your thyroid can't make hormones as it should. Hashimoto's disease, also known as chronic lymphocytic thyroiditis, causes inflammation of your thyroid gland that often leads to underactive thyroid (hypothyroidism). It's an autoimmune disorder in which your immune system inappropriately attacks your thyroid gland, causing damage to your thyroid cells and upsetting the balance of chemical reactions in your body. Hashimoto's disease is the most common cause of hypothyroidism in the United States.
These are some of the symptoms someone with the disease may have:
Because the thyroid gland may swell when you have Hashimoto's disease, you may have a feeling of fullness or tightness in your throat.
You may have trouble swallowing food or liquids.
You might notice a swelling or bump (called a goiter) in the front of your neck.
You may experience tiredness, forgetfulness, depression, coarse dry skin, slow heartbeat, weight gain, constipation and intolerance to cold.
Many people with this disease have no symptoms at all. An ordinary blood test may just show that the thyroid hormones are out of balance.
A blood test can tell if your thyroid gland is not working properly. Your doctor can give you other blood tests to look for Hashimoto's disease.Although Hashimoto's disease can affect people of all ages, it's most common in women who are between 30 and 50 years of age. If someone in your family has had thyroid disease, you may have an increased risk for Hashimoto's disease. No one is sure why people get this disease.
Hashimoto's disease has no cure. However, your doctor can treat low thyroid function so you probably won't have any long-term effects.
Thyroid medicine can replace the hormones your thyroid gland usually makes. How long you need to take the medicine will depend on the results of your blood tests. For most people, thyroid hormone medicine causes no problems.
Taking your thyroid medicine and having regular blood tests to see how your thyroid gland is working can help prevent symptoms like tiredness, weight gain and constipation.

I hope that this has been somewhat helpful to you. Let me know if you need more information!!
Peace and Blessings

06-25-2005, 12:52 PM
Hi Betsybaily;

I had non-Graves hyperthyroid many years ago, well before I was dx'd with lupus. At that time, I was treated solely with meds, the doc first "shut down" my thyroid with (I think it was) PTU, then gradually introduced synthroid until the thyroid kicked back into normal "mode"

I know how awful it feels to be hyper and to by hypo thyroid! When I was seeking answers - and ultimately dx'd with lupus, my first thought was my thyroid was acting up again. It felt similar.

I know this isn't a direct help for you, but I do think that all of the autoimune diseases are related - and our glands affect our imune system.

Life is a web, sometimes messy, sometime neat. It is good to have friends - even in cyber space - who will listen and let you lean when you need to!

Roni Shawn
08-11-2005, 01:49 PM
I have been diagnosed for 3 years with Lupus...I have had hypo for 17. Almost 2 yrs has gone by, that I was told that I have a nodule on my thyroid. I cannot get into the doctor that takes care of that, cuz I owe them money, in which I cannot pay for. So the doctors, I feel, only are in the health care profession for the money, not the care and love of the patient, or he would help me. So I dont know what to do. My family has a long history of thyroid cancer. Any suggestions?

08-12-2005, 11:43 PM
I was diagnosed with hashimoto's a very very long time ago....and have been on synthroid for 20 years.... all of this is so weird and starting to all link up it sounds like.....Hat LADY and Susie....my blood tests came back with blood work that does not indicate I have LUpus but I have nearly every symptom....I have been on rotating wheel of specialists here in Los Angeles....with everyone passing me off to someone else......the frustration is enough to kill you....
I finally had a man that is doing some very intersting research at USC on LUPUS...I am very good with snooping and finding things out when it involves my health... I briefly explained things sent him my charts and he is going to see me.....(he doesn't see patients - he only does research...and is involved in one of the largest SLE clinical trials in the country...I read over the papers that explain what he is doing but I might as well have been reading Russian!....the one thing that attracted me was the piece of info that said he was getting cose to something that would replace LUPUS patients need for Prednisone and other drastic transplant medcines...which are my biggest fear about all of this....
My concern is..........what happens when the blood work is negative ??? Does that mean I don't have it???? I just don't believe that....EVERYthing that is inlvoved with this damn disease - I have and had no idea what this was AT ALL....until about 10 days ago...
.except for the butterfly skin rash...that is the one thing ( thank the lord) i don't have....although it was taken by my pulmonary docotr in an attempt at trying to figure out my chest pain problem...
What is the reason they are hesitant to diagnose patients with it?
Who in the hell would WANT this crap???
This is the worst news I have had in my entire life...I am an ex- professional athlete...and this is devastating to me....
Isn't it to everyone?
I cannot imagine why a doctor would not want to diagnose someone with it...I have already been diagnosed disabled from my PVNS....so am wondering fi that is the only reason......but most Rheumatologist diseases are not exact...are they? I thought i read there was no Definitive test for lupus.....??? right? so if there is no test.......how can they diagnose?
or are we in a catch 22 here with the patients being the losers???????
Thanks for both of your advice and help...what do you suggest i do>>>? I find out on MOnday when I can go see this research doctor....I am praying he lets me participate in his clinical trial....maybe if you read it you would understand it and be able to decipher it for me.....I am sure if he had a cure YOU all would know...but maybe its something good.....

we can only pray and hope..........

Roni Shawn
08-13-2005, 01:34 AM
Blue, the same exact things happen to me. My blood work doesn't show, but it is very evident that I have it. I have had testing that the ANA has been elevated, but then they do it again, and it's negative. So it is very confusing to me at times. It makes me feel like I don't know what the heck is wrong with me. So I am right along with ya. It's funny how we all feel the same way. What chest pain are you talking about? I had horrible chest pain, then I couldn't breathe a while later, cuz the pain was unbearable. It turns out, I was dying from Pulmonary Emboli (blood clots) in my right lung. My lung had collapsed and I had no BP but my pulse was out of this world. There are MANY things that you have to be careful about now. I am now on blood thinners, and have been for 2 years now. Usually, the treatment lasts for up to a year. So it is from the Lupus. I have been hospitalized for Pancreatits as well. And that is awful painful too. Lupus is a nasty disease. I don't know what stage I am at, nor do I know how to find out. I was told by Pain Clinic Doc that there are stages. I need to know. I have had about every organ attacked, except for my heart--KNOCK ON WOOD. I am getting more and more scared. I had to be put on xanax the other day, because this is starting to scare me. I know that I have gotten much worse. I don't want to die. Blue, just be real careful at what you do, and pay close attention to things that are happening in your body. Don't let ANYONE tell you that you are wrong, or that it's in your head, because it isn't and you aren't. It's all very real. And if you ignore something that is going on, it may cost you your life. I will be praying for you to get more knowledgable on this disease and that you can handle what is coming at you. It is not fun;.......

DISEASE was explained to me in a weird but sensible way the other day.
Dis-- ease.....Your body is dis--eased......Makes sense....

08-21-2005, 10:06 PM
I have had hypothyroidism for 5 yrs. The way they found this out was when I was hospitalized for chest pain. (My rheumatologist said this could have been the start of when my UCTD symptoms became evident). 300mcg is high but they will probably put you on a maintenance dose once that gets under control.

I too was tired all the time, trouble concentrating, got cold very easily. I've been taking Synthroid since 2000.

I asked my PC last time I was in why rheumatologists are so reluctant to give a firm diagnosis of lupus. She said she is convinced I have lupus and I have since received a diagnosis of lupus from my rheumatologist. My PC said dr's are reluctant to give this diagnosis due to insurance reasons. Once they give you this diagnosis, it basically cuts you off from qualifying for new medical/life insurance. Now that I have this diagnosis, I do not let any of my insurance lapse from my employers. As long as you stay covered (I'm under both mine and my husband's insurance and carry 2) they can't make you have a physical unless you are applying for more life insurance than what is offered by your employer.

Personally I really don't care what diagnosis I get, as long as I get the proper treatment for lupus. I plan on being around for a very long time and won't let this get me down. My mom died several years ago because of heart disease and refusing to see a dr. when she should have. That taught me a valuable lesson to never ignore the warning signs. If you don't do it for yourself, at least do it for your family because they are the ones who will suffer after you're gone.