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Thyroid and other Deficiencies

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Thyroid Disorders
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BFogg
Regular Member
Joined : Feb 2014
Posts : 56
Posted 7/22/2014 4:58 PM (GMT -8)
Let me start by telling you this will be a very long and tedious post for others to read. For those of you who stick around to read this all, I greatly appreciate your patience and hope you can give me some input. To tell my story, I'll have to start from the beginning. Which was almost seven months ago.

January 5,2014. My son had been dealing with a bout of the flu. Diahrrea and vomiting. He's only two so at the time I was staying up late with him, cleaning up after him and easing as much of his pain as possible by holding him till he fell asleep. It took about two weeks, but he finally got better. A week later my sister (who had been pregnant at the time) gave birth to a little boy. I decided I would stay the night at the hospital with her so she wouldn't be alone. It was eight o'clock at night when I arrived. Around five the next morning I was feeling unwell so I handed the baby back to her and decided to call it a day.

That night, my son had been throwing up again. I was so tired an exhausted I just wanted to cry. My daughter was also not feeling well and was crying up a storm. I was practically in tears before my husband told me to lay down in bed. He was going to help take care of them for me so I could get some rest. I tried to lay down but noticed my chest was literally shaking from how fast my heart was accelerating. I rolled over and tried to get comfortable. I've never had any health problems so I chalked it up to severe stress. After about five minutes of attempting to get comfortable I realized I couldn't feel the whole right side of my body. The pain in my chest just became so tremendous that I sat up and told my husband he needed to take me to the ER immediately.

The ER doctor ran an EKG, said it was normal and that I probably had a panic attack, or costocondritis. I took his word for it and went home. From this point on my health seemed to decline. Three days after my attack I found that when I tried to sleep at night I'd get "electric shock'' pulses that would go throughout my body that made me feel like I was literally about to die. I ran to the ER, they said that my blood work came back clean (even though they only tested me for the basics like Potassium and Calcium). They sent me home with muscle relaxers, 800 mg worth of muscle relaxers. Now I'm no doctor, but a woman of my height and weight should never take that large of a dose. I'm only 22, 5'4 and 110 lbs. I threw away my script in frustration.

A week later I developed strep throat. My tonsils became so inflamed that even antibiotics and steroid injections couldn't get rid of it. Finally after two months of several antibiotics it went away. But another disease was lurking in my gut from the use of all those antibiotics. Clostridium Difficile, or better known as C Diff.
I went to the ER ten more times before they finally figured out I had it. They put me on two weeks of Flagyl which I thought had cured me.

Over the next few months, from February to May my symptoms progressed. They were always worse at night but consisted of this:

Dizziness
Nausea
Heart palpitation s
Urine Inconsistency
Extreme Hair Loss
Swollen Tonsils
Visions Disturbances
Vertigo
Dry Mouth
Excessively Dry Skin
Hands and feet always cold
Sun Sensitivity
Numbness in hands/feet/scalp
Low Energy
Chest Pain
Extreme weakness upon waking
Trouble sleeping
Pressure in head
Skin rash on face (but not often)
Dry Mouth
Trouble swallowing
Tremor
Heavy menstrual cycles
Brain Fog
Shortness of breath

The symptoms seemed to get worse and worse as the days drew on, yet everyone kept telling me it was all in my head. That was the worst part, when my husband would look at me like I'd become something he detested. He would look st me like I was crazy, like I wasn't the woman he married. And in a way, I wasn't anymore. I went from being a young mother of two children, who was always on the go who never got sick, to this frail, psychotic lunatic who thought she was dying. I couldn't help it, some days I still can't.

June 6,2014. Went back to the ER after having several bouts of diahrrea. I was told I had C Diff again. I broke down a bawled like a baby. I was already dealing with so much! I started back on the dose of Flagyl again. Four days into it I got the worst pressure in my head. It literally felt like a giant was squishing my head between his massive hands. I went to the ER again to get a different medication and was prescribed Vancomycin. I assumed the flagyl had given me an allergic reaction so I took the script to Walgreens and paid $430.00 out of pocket for this, praying it would cure me.

It didn't. It made me so violently ill that I returned to the ER. After running tests an amazing ER doctor asked me if I'd ever been tested for Lupus. I said no and that all my specialist said I was too young so they never bothered. I asked why? I was just worried about my c diff I said. He told me that the c diff was the least of my worries and that he suspected by my lab work that I had an autoimmune disease. I was so confused but thankful that someone had finally made me feel like I wasn't crazy. He gave me a hug then sent my files upstairs. I thought I was going to get help, little did I know it was going to get worse.

I was admitted to my room on the sixth floor, I asked if I could see my labs.
I was told that the ER had had down time so my files wouldn't be seen till later that night. After twelve hours of waiting my doctor came in. She said she wanted to keep treating my c diff, but I explained I couldn't take the medicine needed to cure it. I said I'd rather die. I then asked what the young ER doctor had told me hours before. Do I have an autoimmune disease. She said she had no idea what he was talking about, handed me my paper work and left for the night. For the next two hours I scoured over my labs and finally came across my TSH level. I was 6.2. Not extremely high but enough for me to realize I had a thyroid problem.

The next day I asked my doctor about it, but she dismissed it! She said it was because of the C Diff! I couldn't believe the idiocy of this woman. All she wanted was to treat my C Diff with medications I could not take! After refusing to look into my thyroid problem I discharged myself and went straight to my Endocrinologist. After looking at my blood work he confirmed that I did indeed have a thyroid problem. I had Unspecified Hypothyroidism. He prescribed me 0.025 MCG of Levothyroxine, gave me a script to get my TSH and free T4 levels checked and said he'd see me in two weeks.

I finally breathed a sigh of relief! I finally had gotten an answer from somebody. I finally felt less crazy, less obsessive.(luckily after being tested three Timex I found d out my c diff was gone. The reason I got sick on the medication to treat it was because people with Hypothyroidism are supposed to stay away from it!!) But even after a month of starting my meds I felt worse. I went to the ER again July 8,2014 with what I thought was a heart attack. It woke me up out of a dead sleep. They said my EKG came back as abnormal, with a normal sinus rhythm/ sinus arrhythmia a incomplete Right Bundle Branch Blockage, Trace Mitral regurgitation and Mild Tricuspid Regurgitation. But since i was young they were not concerned! Well, I sure as heck was! They discharged me saying possible anxiety and constocondritis.

I'm still waiting to get into a Rheumatologist to treat my possible autoimmune problem, but in the mean time I am wasting away. I literally sleep twelve hours and wake up feeling like I've been hit by a car. I wake up numb, dizzy and disoriented. Sometimes two times a week I get these heart attack feelings but keep trying to tell myself I'll be okay. I go to sleep with tremors, numbness and horrible electric shock sensation s just ripping threw my body. I did extensive research and found that most people with thyroid disorders can have severe vitamin b12 deficiencies that cause a lot of the neurological problems s I am having. It also just so happens to run on my fathers side of the family. Just hours ago I had another one of my attacks at my mother in laws. It feels like my body is being drained of all the blood in it, followed by the erratic chest palpitations. I'm a complete wreck!

Has anybody else experienced anything like this? I really need some input, even some small glimpse of hope that this has happened to someone other than me. Most doctors think I'm just crazy, but in my heart I know when something is wrong with my body. I will continue to fight for my answers. I will not die because I've been thrown into the ''too young to be sick'' category. It's ridiculous. I may not seem that important to all the doctors I see, but when it comes down to it I am a human being and I deserve to be listened to. Because at the end of the day I have two children who love and need me and I need to be there for them in the long run.

For those of you crazy enough to read this all, I applaud you and appreciate the time you took to read this. Please, feel free to throw any information my way if you can. Thank you.

Post Edited (BFogg) : 7/22/2014 7:03:50 PM (GMT-6)

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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 7/22/2014 6:09 PM (GMT -8)
It sounds to me as if you really need a good primary care physician to help sort this all out. The ER really isn't set up to deal with complex diagnosis, so you can go there every week for a year and perhaps be no more in the know than you were when you started. The actual function of the ER is to do whatever is necessary to keep you alive and functioning until you can get to a regular doctor.

We aren't doctors here and can't diagnose, but you would surely benefit from seeing the same doctor regularly and getting a complete evaluation when you're not in a crisis. Good luck, and I hope you find your solution.
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BFogg
Regular Member
Joined : Feb 2014
Posts : 56
Posted 7/22/2014 6:47 PM (GMT -8)
Unfortunately. Cannot afford my primary, it is more than $166 for each appointment since I am out insured, but I completely agree with you one hundred percent.
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hypoHashi
Veteran Member
Joined : Jul 2012
Posts : 801
Posted 7/22/2014 9:53 PM (GMT -8)
Hi,
I am glad you found what was causing you these problems, I am not a doctor but it seems - according to my own experience - that your thyroid is connected to all of those symptoms.

What you need to do now is retest your TSH and FT4 after at least six weeks on 25 mcg/day of Levothyroxine, by the way, which brand name do you take? If you take a generic form that could cause you problems in the future since the supplier might change and as a result your absorption will change.

Levothyroxine should be taken first thing in the morning, ALWAYS AT THE SAME TIME, on an empty stomach, and not to eat for at least an hour afterwards, also it is important to take the same dose each day, like every Sunday take the same amount and so on .

Feel free to ask if you have further questions,
Best,
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BFogg
Regular Member
Joined : Feb 2014
Posts : 56
Posted 7/23/2014 7:38 PM (GMT -8)
My TSH level was retested in The ER at 1.5, but not my FT4 that's being tested this Friday. I was surprised at how quickly my levels went down. I also learned today I have a possible parathyroid problem that could also be causing some of these symptoms as well.
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BFogg
Regular Member
Joined : Feb 2014
Posts : 56
Posted 7/23/2014 7:39 PM (GMT -8)
And all I know is I take the generic version of Synthroid which is the Levothyroxine.
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hypoHashi
Veteran Member
Joined : Jul 2012
Posts : 801
Posted 7/24/2014 12:00 AM (GMT -8)
For how much time have you been on 25 mcg/day ?
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BFogg
Regular Member
Joined : Feb 2014
Posts : 56
Posted 7/24/2014 8:45 AM (GMT -8)
For about a month and a half, but I've noticed since taking it I am significantly worse.
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Heidi40
New Member
Joined : Aug 2014
Posts : 8
Posted 8/1/2014 6:08 PM (GMT -8)
If you have abnormal parathyroid levels (high), pick your search engine of choice and look up hyperparathyroidism.

Reading your story was so similar to reading my own. Just know that you are not alone and that none of this is in your head!

Hyperparathyroidism covers nearly all of your symptoms and literally can destroy your life. Until you find out, hang in there. Let us know about your parathyroid results and do take care of you.
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BFogg
Regular Member
Joined : Feb 2014
Posts : 56
Posted 8/16/2014 5:49 PM (GMT -8)
I am very well read on hyperparathyroidism and I cannot agree with you more! My Vitamin D levels are at a L 16, I just found out and my calcium levels are anywhere from 10.2-10.6. I also have a cyst on my right thyroid lobe that could be pressed against my parathyroid. The only problem is my Endocrinologist refuses to get me the help I need for it! He says because my levels were 9.8 or 9.1 for my calcium for recent hospital visits that it is not the case. But the only reason why they even went down was because I have been staying completely out of the sun so as to not raise my Vitamin D. He said it was all just because of my Vitamin D deficiency, but if that were the case my calcium would be low. I feel like I am dying, it is so awful to live like this. I'm only 22 and cannot handle it anymore. I need a parathyroid doctor but can't afford it and each day my symptoms get worse and worse. So I guess I just have to wait till it eventually kills me.
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BFogg
Regular Member
Joined : Feb 2014
Posts : 56
Posted 8/16/2014 5:52 PM (GMT -8)
Btw I had my PTH levels checked two days ago at the hospital here were my results:

PARATHORMONE, INTACT
31.7
12 - 88 PG/ML

CALCIUM
9.1 (within range)
8.5 - 10.5 MG/DL

My calcium just a day before that had been 10.2 with my Vitamin D reading a low 16.
With Parathyroid disease I know it can fluctuate and that your PTH can too.
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Emelya
New Member
Joined : Aug 2014
Posts : 10
Posted 8/20/2014 2:12 PM (GMT -8)
Hi BFogg. I'm new here and have just read your post. I was also told at the ER that they weren't worried about my heart because I was 28 (I'm 29 now), even though it was very irregular on the monitor for hours. I was diagnosed with diabetes type 2 during that ER visit (November), which they also barely believed because of my age.

When I was 16 I was diagnosed with Pernicious anemia (low B12, inability to absorb B12 from food) and had to have B12 injections for years, until I was switched to B12 pills instead for some reason.

My last doctor told me I have PCOS but I had no tests for that and she didn't treat me for it.

I'm telling you all of this just in case we somehow have something in common or any of it is useful insight, because most of the symptoms you wrote about are familiar to me.

I was just put on 50 MCG of Levothyroxine yesterday, this doctor said my medical history shows I've had a low number of some kind (I know nothing about any of this yet, it was literally yesterday), and he gave me papers of info on "Thyroid Disease", and told me he thinks I may have Addison's Disease and (or?) an adrenal problem or pituitary problem.

I made a long long post about this just a few minutes ago here, but like I said, I figured I'd mention the PCOS and Addison's Disease in case it was somehow relevant to you.
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