I am a 19 year old female (5'8, 140 pounds so I'm a healthy weight.)
I have been having persistent, worsening, strange symptoms over the course of my life that was never diagnosed, and that I think may be a thyroid problem, but I'm hoping some of you have some insight to other ideas.
My dad and his mother are both hypothyroid, and my mom's side of the family has a history of crohns, collagenous colitis, and most likely more. (They were all very poor and many of them died young.) My mom had a lump in her breast in her 20's, but my dad has never had cancer.
As a kid, I was always very anxious. At night, I would always be too hot and too cold at the same time. I've always had a body temperature of around 97.1 and a low blood pressure. I've always been extremely tired for no reason, which often caused me to fall asleep in class. No matter how much sleep I'd get, I'd just be exhausted. My mom was always taking me to the doctor for being so tired, but they'd pretty much test me for mono, say "nope not mono just sleep more" and send me home. I've never gained or lost unexplained weight.
I developed allergic reactions to every antibiotic I've tried besides one. My mom claims it was because I had to use them as a baby for ear infections caused by smokers (?). I had strep throat once a month for an entire year one year which prompted the removal of my tonsils and adenoid. However, even after having my adenoid taken out, I had persistent, almost constant sinus infections which were dismissed as "non-allergic rhinitis." I also saw a ton of floaters all the time until I started middle school, but I've always had 20/20 vision.
As a kid I started wheezing a lot for no reason and had some sort of testing done. They determined I had asthma, which didn't really make sense considering I never had asthma attacks and inhalers didn't do anything for me. I started getting a lot of sharp chest pains as a kid upon breathing that would last for minutes at a time, but my mom told me it was spasms of my diaphragm.
I almost had surgery in 4th grade because of osteochronditis dissicans. I DID have surgery on my shoulder later on because the joint was so loosened by 8 years of swimming I could practically pull it out (but I still can, so I dunno.) A lot of my joints are loose. For as long as I can remember, every time I stand up I am temporarily blind. No seeing stars, just black. I got a burning pain in my upper back that was diagnosed as a pinched nerve around the age of 13. I also have an occipital lymph node that is so big it feels like a knot, and it's been there for years and years.
When I was 14, I went to a very intense swim camp and afterwards, was very very thirsty and sick for a week. After around a week of drinking tons of water (and eating plenty, trust me) I woke up one morning feeling sort of nauseous and cold. I walked into the bathroom, turned on the shower turned around and the next thing I knew I was face first on the ceramic tiles. I could feel my nose hitting them. My dad turned me over, and I was sweating and very cold and clammy. I felt like I was dying. We got to the ER, and my blood pressure was 70/20 and pretty much stayed around that range for a good while. They gave me fluids and had me lie down for a while. When I was lying down, my blood pressure was normal. As soon as I'd sit or stand, I'd get very sick. They told me I was dehydrated, but I know I wasn't. I still don't know why that happened.
In highschool, I started getting a lot of strange symptoms like chronic depersonalization/detachment, seeing flashes of light every day for most of the day, panic attacks, everything looking like it's very far away, not recognizing myself in the mirror, very strange memory loss, especially hard time finding the correct word, very severe anxiety, numbness in my hands, speech that would become slurred upon anxiety, constant hunger and craving for sweets etc etc. I took prozac, and it didn't help. Cymbalta didn't help.
In college I felt fine for a while, but started losing a ton of hair for a while (it grew back) and also started getting this numbness in my back in my left shoulder blade. It would also sort of ache sometimes. I figured it was from my shoulder since it's the same shoulder I had surgery on.
This past summer I started developing symptoms that perfectly match simple partial seizures in temporal lobe epilepsy. Very sudden inability to speak, very strange feeling that's kind of like deja vu, very strong deja vu, feeling like everything is very strange and far away, not understanding speech so well, having a glassy stare, crying without really feeling sad in the first place, difficulty using my hands/sensing space, etc. I had these constantly, saw neurologists, had tons of tests, and the only thing they told me was low B12.
I started taking Adderall from a friend out of desperation to do well this semester in college (or, you know, actually be able to learn) which magically made everything go away. EVERYTHING that was ever wrong with me was suddenly just so right. I was smart, energetic, motivated, healthy, etc. And then for some reason I just started feeling awful around 2 weeks ago. I had gotten a prescription for Zolpidem which I'd take to sleep, but the next day I would just feel TERRIBLE. One night, my palms turned really red, developed some kind of dark red rash with swollen, painful knots, huge veins, and swollen feet. I was dripping with sweat and my heart was racing and felt like it wasn't beating right. I took some claritin and ibuprofen and tried to sleep. The next morning my hands and feet were still swollen. At lunch my resting heart rate was 138. Ever since then, I've just been so sick. My eyes feel hot, like I have a fever, and the tips of my fingers swell and turn red. My gums are infected, I have a sinus infection, my throat's a little sore, I had an infected nail, and I have these weird sores on my hand (one on my wrist, one on my knuckle.) My teeth ache all the time (maybe from teeth grinding) and I never feel like leaving my room anymore. My arm has this weird muscle ache, and I feel too weak to lift heavy things or go up more than one flight of stairs. My back has been hurting a lot.
I've developed this awful pain (kind of like dull but stabbing?) in my back where the numbness used to be. I can barely turn my head (left is harder than right) because it is so stiff. This could be due to my backpack. I've found that taking antihistamines make me feel a little less like I'm dying the next day. I just finished finals. I want to try to quit taking adderall but I have to drive for 3 hours tomorrow.
Please help, I'm afraid I am dying. I have only been smoking for half a year. This doesn't make sense. I just want to be a scientist
First of all, adderall is a very powerful and addictive drug and should never be taken without doctor supervision, particularly a script intended for another person. I'm wondering how you've been able to continue getting it and what your friend does for med, when you are taking her/his supply. I'm not terribly familiar with it, but a quick search tells me that it, by itself can cause a lot of your symptoms, including rapid heart rate and palpitations, as can Claritin and other drugs you mentioned.
You would need to have some thyroid tests done before anyone can tell you whether or not you have a thyroid issue. Many of your symptoms are quite random, and while some of them could be related to thyroid, they could also be related to a lot of other issues as well. The first tests you need to have done, to determine a thyroid issue, would be Free T3, Free T4, TSH and thyroid antibody tests.
Are you being treated for the low B12? This can also cause strange symptoms. Have you been tested for diabetes? Diabetes can cause the excessive thirst you described, as well as light headedness, your feelings of detachment, mood swings and many others.
Most of these issues are very easily treated, once diagnosed. You should go see your doctor and get the proper thyroid, and other tests, done, then post the results, along with the reference ranges, since these vary from lab to lab.
Some of the things you mentioned also I had when I was younger. Have you ever had allergy testing? I had 19 different things I was allergic too but didn't get the regular symptoms. After these allergy tests I was on allergy needles for a few years and I got better. That was probably 15yrs ago now. It won't hurt to get it checked.
Are your B12 supplements in the form of pills/tablets or shots? Shots generally work the best.
Have you ever had any thyroid testing done? If not, that would be the next step, as it would be impossible to know if you have thyroid issues without seeing some lab results and reference ranges. If you have them, please post them so we can comment more fully on your situation.
I got B12 tablets from a neurologist who did more tests to ensure that I am simply deficient rather than unable to take up B12 properly. Unfortunately, being a college student means your health center doesn't let you use your own insurance to cover thyroid tests in their office (and even if they did, not even the student insurance covers it.) So I am waiting to get the testing done on Monday. For all I know, the doctors have just been testing T3/T4 my whole life and no TSH.
I mostly was just hoping that someone would have heard of/known someone with a disorder with pronounced symptoms like mine.
I usually dont respond to most posts, but i see some common traits that I have that you posted so i thought i would chime in.
I also have the weird back pain. it is below my right shoulder blade, wraps around to the front under my right rib cage. I also sometimes have a hard time turning my neck. its like its all locked up and takes great force to move it. Sometimes its there, other times its not. Usually I get the back thing and the neck thing at the same time. Also the Dejavu thing to me is more like a confusion, or slight dementia. I myself am still looking for answers and a possible silver bullet, but I wanted to let you know you are not alone.
Also, my symptoms are not random. Thyroid disorders that are considered autoimmune disorders are frequently associated with other disorders such as IBD's and celiac, and with connective tissue problems. Disorders such as Ehlers-Danlos are frequently associated with connective tissue problems (obviously), gastrointestinal issues including the IBD's, as well as dysautonomia (which includes issues such as orthostatic intolerance, postural tachycardia syndrome, etc.) On message boards, many women with either Hashimotos or hypothyroid with family history of autoimmune issues have reported severe and universal antibiotic allergies.
In fact, DRI's such as Adderall are often prescribed for orthostatic intolerant patients. I'm not a drug-loving junkie or a cheating student. Having relief for the first time in your life is like putting on glasses for the first time. You can see the blades of grass, see the leaves on trees in detail, see tiny bugs you've never seen before.
Looking at the page for restless leg syndrome, you see that it is highly associated with dopamine and iron. And, a copy+paste: Other associated conditions include varicose vein or venous reflux, folate deficiency, magnesium deficiency, fibromyalgia, sleep apnea, uremia, diabetes, thyroid disease, peripheral neuropathy, Parkinson's disease and certain auto-immune disorders such as Sjögren's syndrome, celiac disease, and rheumatoid arthritis.
I don't have restless leg syndrome, but the relationship between levels of dopamine and all of these other problems is pretty telling.
I'm happy to hear that you had tests regarding the B12; many of us with B12 deficiency can't absorb it properly, which is why we have to do shots.
Actually, the T4 and T3 are as important as the TSH, if not more so, since TSH is a pituitary hormone and not really indicative of thyroid status; T3 and T4 are actual thyroid hormones ......... but make sure you ask for FREE T3 and FREE T4, not total T3 or total T4. My point is: if you simply ask for T3 and T4, you will get totals, not free. Tests for totals are considered obsolete and of little value, so are rather a waste of money.
Some people with thyroid issues have symptoms like yours, but those symptoms can also indicate other issues as well; therefore, the only way to know if it's a thyroid issue is to have lab results.
Since my time on here and many many posts, I have found 3 people with the exact same thing as me, and as you describe. In fact my list of symptoms matches their list item by item. So when a doctor tells me I'm nuts, I've got evidence I don't...
I think you have that backwards on the testing. Most likely the TSH is ALL they are testing and possibly a T4 or even a FT4 with that. The best tests and how to treat based off labs would be to get the FREE T3 and Free T4 and look at those ratios with maybe taking the TSH in as something last.
FT3 is usually high on point at the reference and FT4 is mid to high in healthy thyroid patients.
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