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1427033 tn?1297507496

My "Health" battle!

After 4 years of suffering and chasing different ailments I am now down to looking at my Thyroid.  This is my last shot at feeling better as I have exhausted ALL other medical options.  I have seen an allergist, two orthopedic surgeons, two GI doctors, my primary doctor, two pain mgmt doctors, a chiropractor and a doctor specializing in infectious dieseases and everone of them has told me I'm fine.  I see a pain mgmt doctor who gives me pain killers, he is a very nice guy, but when I tell him I'm still hurting he just looks at me like I'm an addict.  I can only imagine the stories he hears.

Anyway...on a daily basis I suffer from the following:
1) lost 15 lbs in the last 3 months
2) Crazy night sweats
3) Insane anxiety
4) Chest pain
5) Blurry vision & black specks in vision
6) Heart pounding like it's coming out of my chest
7) cant focus or concentrate
8) Insomnia.  I only sleep 4 hours a night and always wake up with my chest pounding.
9) Hands & feet tingle all the time.
10) A little depression.
11) Mood swings.
12)  Hands & feet get cold after eating.
13) The backs of my legs always hurt if I sit down for over 15 minutes.
14) I shake a lot in my hands.
15) Both eyes are always red and irritated.
16) Crazy brain fog.

These are just a few things that I deal with every day.  I take asprin, Ibuprofen or Lortab every day to deal with the pain in my legs, feet, hands and muscles and those only work for a few hours.  Two years ago I had two ulcers perforate, due to the NSAID's, and almost bled to death during the night.  

This past Friday I was rushed to the ER with severe chest pains, lower abdominal pain and the worst migraine I've ever had.  They took blood samples, a urine sample, gave me a CAT scan and hooked me up for an EKG and every test came back normal.  I finally screamed at the ER doctor "I HURT DAMNIT.  FIND OUT WHAT IS WRONG WITH ME!"  

Monday I was at my GI doctor.  I told her I wanted my Thyroid checked and she ordered the T4 test...the results came back normal also.  I posted a thread earlier asking about the T4 test and was told that those tests are basically useless in determining "hypo" or "hyper" conditions.

Here is the strange thing.  Last April I was in the hospital for 6 days for an unrelated problem and I noticed that on day 4 my eyes had completely cleared up...they were snow white for the first time in years.  I also noticed that all my anxiety has disappeared and the depression was gone.  No body aches or pains...I felt wonderfull.  I was on an IV drip the entire time I was in the hospital and after thinking about it I remember reading the ingrediants on the bag.  IT was full of things I could not read but also noticed magnesium, calcuim and some other minerals and what seemed to be vitamins.  

About 3 months after I got out I began to notice all my symptoms returning.  I was heart broken.    This morning I woke up at 3am, as I usually do, and broke down crying.  I'm a 47 year old man, weigh 190 lbs, work out every morning and not really affraid of much.  This has shaken me to my core....Im tired of hurting and fighting anxiety.  I finally called a Naturopath this morning and spoke with her and she really confirmed my thoughts on my Thyroid and tomorrow I am undergoing a "Nutrition assesment" to determine if I am deficient in some kind of vitamin, mineral or amino acid.

I will post every day in hopes that my journey will help someone that is fighting this same thing.  I am convinced I have a "Hyper" condition.  Another strange thing is that at exactly this same time last year, winter, I vividly remember losing weight and wondering why.  Once the weather warmed up my weight returned and most symptoms seemed to fade.  I'll keep everyone up to date.  
18 Responses
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1569091 tn?1295808551
Today, I made a decision to release my Endocrinologist. She makes me feel hopeless. She will only test TSH. Every book that I buy on the Thyroid, and almost every forum that I join says almost the same thing. TEST FREE T4/3. These doctors seem to be so unlearned and unsympathetic that it's scary. I gave her a good argument today. I felt her surprise at how much I've learned since having my thyroid removed four months ago. I take care of myself pretty good, so I know when something is not working for me. All she wanted me to do is stay on 88 mcq Levothyroxine no matter how I felt. I told her no way. My quality of life has dropped dramatically since seeing her. She is not skilled enough. I am certain out there are some doctors that care and are knowledgeable. I hope that I find one.
Helpful - 1
393685 tn?1425812522
Sea Kelp? - Iron?

not Iodine/Iodide?

I don't think its the aminos helping - as you said you started the Magnesium and Zinc.

Good Luck.
Helpful - 0
1427033 tn?1297507496
I'm almost affraid to say this but I think I am actually seeing some results.  It is now 4:15pm CST and I'm getting tired..I could actually go to sleep.  This has not happend in the last 4 years...I'm always wired for sound, jittery/jumpy.  

I've read on several sites saying that improvement was shown at 2 weeks when people took up to 4 grams daily of L-Carnitine.  Im taking anywhere between 2-3 grams daily and have been doing so for about 10 days and I can say that some symptoms have improved.  A long way from where I want to be but at least it is enough that I have some hope.

I've read almost every post on this board and am truly amazed at the strength people show in getting through this awful disease.    
Helpful - 0
Avatar universal
I've had most of your symptoms, not at the same time, for years. Leaving aside my hypothyroiud ad heart disease problems, I have found almost every time that .50 alprazolam under the tongue will clear up most of the symptoms and give you a chance to deal with the mess. It's not a cure and it has addictive dangers. But it's a quick answer like a handy slit trench when you're under fire.
Helpful - 0
1427033 tn?1297507496
Still taking the L-Carnitine and I am actually seeing some improvement.  The past two nights I have not experienced sweating or waking up with my heart about to pound out of my chest and a few of my other symptoms have certainly decreased.  I'm not as dizzy as I used to be and I did find myself yawning last night...I actually fell asleep without taking anything.  This did not last long but at least it's progress.   Anxiety is my big problem right now.

I have started taking a "Sea Kelp" suppliment as I too believe I could be somewhat low on Iron and have also started taking a Magnesium/Zinc suppliment.  

I dont mean to rant on this again...BUT...I just find it so difficult to believe that we are all suffering from similar problems, have had the same conversations with our doctors and yet they refuse to listen to us.  All the while...we sit here day after day suffering and wondering if/when it will ever end.  The arrogance of these BASTA@!S is amazing.

THANK YOU for all your posts and help.  
Helpful - 0
393685 tn?1425812522
Just reading the first post you posted there is no doubt in my mind that you have hard mineral deficiencies to start with.  Possible even iodine deficient with low magnesium, zinc and copper levels.

What was the Vit D lab reading you had done? If you're not in the 60-100 range of that then your body will rob out alot of the minerals you can getting in.

I totally agree you need those labs that goolaara posted and certainly a free testosterone level done too. With those you definately need to push to only run a test called the RBC magnesium lab. Most have to twist the doctors arm to do it but you will see exactly where you need to be to supplement .

I don't believe the amino acids are what you need right now. They will combat the others and cause a spike in other hormones. A racing feeling is common with hard mineral deficiencies and confusing the body to false energize itself.

You would be a perect candidate to see Intergrative care for what's going on with the specified tests you certainly need. Most traditional doctor won't even look hard at mineral levels right or even set the Vit D panels at a proper level to rebalance the body. You mention cost above with the NP and unfortunately many Intergrative A4's will also be costly at first but when recovered after right labs and dosages of meds and supplements it works out to pennies a month to stay well. Invest in your health right now is best in my opinion.
Helpful - 0
219241 tn?1413537765
First up let me say, I empathise a thousand percent. I spent over 15 years in hell and beyond trying to prove I was ill. I won't bore you with all my story, you can read alot of it in my journals on my profile. (I suggest you start a journal too, as it is easier in the future to read than scrolling through posts.)

Secondly, you need to be aware that going to the Naturopath, whilst may help in your general health is not going to help long term if you have an underlying untreated thyroid condition. I have done the Naturopath thing and yes, it is expensive, but it has helped me to learn how to listen to my body and pay attention to what will work and what doesn't.
  
Thirdly, you say you are having thryoid testing done, I wonder if you are aware to get thyroid antibodies checked? If you get basic thyroid testing done, this may not show a Grave's or Hashimoto disease. You may have either of these and finding out your thyroid tests are 'normal' may lead you down the wrong path of wellness.

Graves left untreated can be fatal. I would urge you to not to be so concerned about supplements and green leafy vegies (not that they aren't a good thing mind you!) but get some antibody testing done sooner than later.  Even in ER's they do not look at the bigger picture, rather they look for worse case scenario and work backwards from there.
   Graves antibody testing is TSI,  you should also ask for TPO antibodies and Tg antibodies, all of these will help diagnose any underlying thyroid antibodies.(BTW T4 testing is useless.. it needs to be FREE T4. T4 is the total amount of thyroxine in your body, Free means how much is usable. That is a HUGE difference.)
   Your symptoms are not just hyper but very much like Graves. I have Hashimoto's but the Graves part can happen in Hashi's as well over time.
Cheers
    
Helpful - 0
Avatar universal
They're there...don't give up until you find one.  Pre-interview doctors over the phone (probably through a nurse) before scheduling an appointment.  Ask them what tests they regularly order.  Ask them which meds they're open to.  Ask them if they treat clinically (by symptoms).  TSH is the least important.  Don't let your doctor keep you sick.

At the risk of overstating the obvious, test FT3 and FT4 EVERY time lab work is done.

Best of luck...
Helpful - 0
1445110 tn?1388209711
I sympathize with you disco. What gets me is how most of the doctors just blow off what you say when you tell them how horrible your symptoms are. Cant they see the desperation in our faces when you tell them your heart is racing out of your chest and you havent slept for days and so on. It seems that all you hear is lets check your levels and then it take days and weeks to even hear back. I have battled with thyroid problems for years and years. I sure hope you can get some help and answers disco. Bless you.
Helpful - 0
1427033 tn?1297507496
Day 2 on the L-Carnitine and no results yet.  Last night was one of the worst.  My heart was racing, heart was pounding like it was coming out of my chest, crazy anxiety and I have not slept in 4 days...no joke.  

With as many people suffering from this affliction I am amazed at how slow doctors are to even test for this.  Also..I'm amazed at how doctors instantly "write off" the posibility.  I asked my GI doctor to test for it and she ordered the T4 test.  I've read many posts on here as well as other websites stating that the T4 test alone is not enough to determine a "hyper" or "hypo" condition.  I'm just not sure what to say as I'm like many of you...frustrated, hurting, mad and wishing/hoping for a cure.
Helpful - 0
1427033 tn?1297507496
I know I said I was going to post every day but this "Hyper" condition is getting the best of me.  I have spent hours on the internet searching, as I'm sure everyone here has, for some kind of cure/treatment and I am shocked at the lack of info I'm finding.

I'm still waiting on the results of my "Nutrition assesment" but in the meantime I started taking 1500mg's of L-Carnnitine a day, a magnesuim tablet, 1000iu's of Vit D3 and B12. I'm just hoping for some kind of relief.  My chest is always tight and feels like my heart is going to come out, my feet always sting/tingle, constant leg cramps and my ears wont quit ringing.  Forutnately I do see a pain mgmt doctor but my script is going to run out early as I'm takng more than Im supposed to.  All my symptoms go off the chart durning cold weahter and all this week has been brutally cold here this past week...around 20 degrees each day.  I'm going to try and get into my pain mgmt doctor early next week and try to explain to her wnat is happening but I'm not sure she wil understand and just think I'm looking to score more meds.  

I am having a Thyroid panel blood test done through healthchcheckusa.com on Monday.  I'm still fighting but not sure for how much longer.  Diet change has not seemed to help much but it may be too soon to realize any benefit.  
Helpful - 0
1299122 tn?1281040416
You truly must find a doctor who will test your thyroid levels - not just the TSH & T4 (Total T4 is outdated & unreliable) but the FreeT4. FreeT3 and definitely for the antibodies.  This is VERY important! Upgrading to a healthy diet and taking supplements is always an intelligent move - but it is not going to take care of the anxiety & heart palpitations.
When I was in my hyper stage of hashis - I went to my former PCP and had an EKG done  which of course came back normal. Her recommendation was medicine for GERD and suggestions of antidepressants - I said no, thanks. This is not a stomach issue! Even I was smart enough to know that something metabolic was going on. WHAT is WRONG with these doctors? Good grief! I am a middle aged lady with all the symptoms of hypothyroid yet it took seeing 4 different doctors until the right diagnostic tests were done! MY TSH always was in normal range during those months that the anti-thyroid antibodies were wreaking havoc on my thyroid. It took years for my TSH to go out of range.
Even now, these last few days I know my antibody levels must be up because my throat feels tight (my thyroid swells when they are attacking it!) I am sure my endo would disagree that I can FEEL anything. But ya know...he doesn't have hashis!
If this naturopath can prescribe bloodwork - then ASK for the correct thryoid tests - that would definitely be worth $200!
Helpful - 0
1427033 tn?1297507496
Woke up again at 3am and could not go back to sleep.  Finally got up at 5am and made breakfast which was oatmeal with cinnamon and green apples and Greek God yogurt with blueberries.  I took a 1000iu Vitamin D3 tablet and a 250mg Vitamin C tablet and off to work I went.  I noticed about an hour later anxiety was getting really bad, heart pounding and ears were ringing.  I hate this.

Today at 9am I went to a naturopath who took some blood for a Nutrition analaysis which costs $200...I damn near feel over.  Guess it will be worth it to find out for sure what is happening with me.  I went to a local health food store and purchased a product called "Calm" which is a magnesium powder and L-Carnitine.  L-Carnitine is an amino acid that is supposed to help with the anxiety and I took the tablet at 3:15pm.

Anyway...it is now 4pm and I've been fighting a foggy brain all day, fatigue, chest pounding and ringing ears but I can say that my anxiety has lessened somewhat.  I'm sure hoping the L-Carnitine will help.  I also just took another 1000iu Vitamin D3 tablet and another Vitamin C tablet.  Will see what happens.  

I have read that eating lots of leafy green veggies, peaches, pears and almonds is supposed to help with a HYPER condition. Anyone agree?  Also...could anyone suggest a suppliment to take for HYPER?
Helpful - 0
Avatar universal
Hello, this is me in a nut shell. Do you by chance get vision tracers?
Helpful - 0
Avatar universal
You and I have a very similar history.  My lower back had gotten not only painful, but weak.  There were mornings I didn't think I was going to make it from the bed to the coffee pot.  A nuclear bone scan revealed some arthritis, some stenosis, some slightly bulging discs...a little bit of everything, but nothing that should have been causing my symptoms.  

I went to a bunch of therapists, doctors, chiros, a pain management specialist.  It all helped for a little while, but, as you say, no lasting relief.

Finally, my husband diagnosed me as hypo (the Hashi's diagnosis came a while later).  He's a cabinetmaker.  After I was on thyroid meds for a bit, my back improved tremendously. It still hurts at times...the arthritis, etc. doesn't go away, but that feeling that it isn't going to support me has gone.

I had weight gain and drowsiness, also.  I'd nod off in the car (as passenger), at my computer, any time I sat down for too long (more than about 10 minutes).
Helpful - 0
1299122 tn?1281040416
I agree that you sound like you are hyPER - but the correct bloodwork should be able to determine that.
My back pain is what helped me to discover my thyroid issue - I kept going to the doctor as I mentioned about low back pain that radiated into my legs, knees and even feet. (other things too, like dry red eyes, ear infections (very weird!) weight gain, fatigue etc)
The blood work revealed the hashis...but I still had the low back pain. Went to chiropractor 3X a week for a month, did the deep massage, no lasting relief.
In May came the hashis diagnosis - it took until September at an appt with rheumatologist who ordered the MRI that revealed a large herniated disk (which I continue to deal with at a pain clinic) Also some sciatica (I sit at a computer all day at work)
There are muscle aches & pains with thyroid problems, and fibromyalgia is often seen with thyroid patients - but you may want to have an MRI of your spine - you might have a disk that is pinching a nerve, like me.If you are going to a pain clinic, did you already have an MRI?
Helpful - 0
Avatar universal
You sound more hypER than hypo to me, but either may be the case.  In addition to TPOab and TGab, I'd have a TSI test to rule out Graves'.

If what you refer to as "the T4" test is free T4, it's not useless at all.  With the exception of FT3, it's the most valuable indicator of thyroid status.  If that was a total T4 test, then I'd agree that its usefulness is limited.  What were the actual results and reference range?

You need more testing:

FT3
FT4
TSH
TPOab
TGab
TSI

You might also consider a thyroid ultrasound, although this could wait for the results of the blood work.

With those simple and relatively inexpensive blood tests, you can confirm or rule out thyroid disease.

Since you reollect having this same issue last winter, I'd also be very sure to have vitamin D levels checked.
Helpful - 0
1299122 tn?1281040416
I'd tell your doctor that you want to test for hashimotos thyroiditis (auto-immune antibodies that attack & destroy the thryoid) I am certain that had it for several years with swings from hyper to hypo - mood swings weigth gain & loss, aches & pains, periods of intense frightening anxiety & insomnia...during which time I was developing thryoid nodules. Now I must have biopsies every 6 months.
The tests are the Anti-TPO and the TGab - at the very least the blood work will rule out the autoimmune possibility.
In my case I went to FOUR different doctors (several times fretful & complaining) until the last doctor finally did the blood work that confirmed hashis. I'd felt SO awful for so many months I was relieved to know I had "something" - I thought I was dying AND going crazy.
Its been a journey. I take natural dessictade thryoid and feel much better - not perfect - but I don't think I will ever feel quite like I used to.
This is a great forum - glad you joined. I am sure the folks here will provide great encouragement - and reliable information - better than doctors!
Helpful - 0
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