hashingonhashis - Tumblr blog

[hashingonhashis]

[hashingonhashis]

A letter to my illness

Dear Myalgic Encephalomyelitis,  I'm over you. I laid in bed crying tonight because my entire body aches. I'm dizzy, nauseous & out of breath. Did I mention I'm just lying in bed? It's exhausting to feel this horrible. I never took you seriously. I mean "Chronic Fatigue Syndrome" makes it sound like I just need a nap. I wish a nap would make you go away. I'm sorry I didn't think you were a "big deal". I've got to figure out the fragile balance between feeling good & over exerting myself.  "Often, there are courses of remission and relapse of symptoms which makes the illness difficult to manage. Persons that feel better for a period may overextend their activities, and the result can be a worsening of their symptoms with a relapse of the illness." http://en.m.wikipedia.org/wiki/Chronic_fatigue_syndrome

[hashingonhashis]

I loved tonight's Manifestation Yoga workshop. It was difficult. We had to be our most authentic, vulnerable self. There was lots of tears, laughter, writing & down dogs. Then, we danced it all out & laughed some more. I'm hoping to attend the Costa Rica retreat. Fear & anxiety almost kept me from going today. I will continue to step outside my comfort zone & be vulnerable. I can do anything my heart desires. #courage #followyourbliss

[hashingonhashis]

For those who have Hashimoto's, how long did it take to consistently feel GOOD?

I am back to feeling the way I did before seeking out Dr. Holtorf. I hurt. I sleep. A lot. I’m exhausted in every way imaginable.

Tomorrow, I will be going from 2 grains to 2.5 grains. I’m on the verge of tears because I’m so looking forward to having that pep back in my step.

If you have Hashimoto’s Thyroiditis, how long did it take for you to feel “good” consistently?

Hypothyroid Mom said she can’t answer the question of “How are you feeling” because she’s forgotten what normal feels like.

Is that what my whole life will be? I can’t deal with that.

[hashingonhashis]

This pill organizer has rocked my world. No more forgetting a dose because I'm running errands. #thyroidthursday #hypothyroid #cfs #hashimotos

[hashingonhashis]

Prediction came true

I got out of bed this morning and immediately started cleaning the house.  WHO AM I?!

I am still have crazy dreams from the LDN but over all I feel good.  At least I do now that my medication has been increased again.  Earlier in the week, I was back to sleeping 16 hour days.  

One day I'll be normal, right?

[hashingonhashis]

I want to update but I hate doing it from my phone. Ugh. Tomorrow, I up my meds. I predict lots of productivity.

[hashingonhashis]

Great book!

[hashingonhashis]

Have you tried Synthroid? I've been taking it for about 5 years and I can tell a huge difference when I take it. (Sometimes I forget. Oops. Also when I was a teenager I didn't realize it would help so much!)

I was on synthroid for a couple years but never saw any relief of my symptoms.  I'm now on a dessicated thyroid medication and I the difference is AMAZING.  

Have you read "Stop the Thyroid Madness"?  It's crazy informative and talks a lot about Synthroid not being the best drug out there.  It only treats the T4 levels and we need to address T3 and T4.  I highly recommend it.  

[hashingonhashis]

Hypothyroid friends!

I’m excited about fellow sufferers following me & I will follow back. I love seeing what you all are doing to overcome these autoimmune issues. I know different treatments work for different people. Lets all dish on where we are at in our journeys & what our treatment plans are?

[hashingonhashis]

Day 6 Hashimoto's Hypothyroid

WoW.  Let me spell it backwards.  wOw. Last week, we increased my thyroid medication and I think that's why I can't sleep at night.  I'm taking it too late in the morning and then begging for sleep come 10PM.  Yesterday was the first day I wasn't absolutely exhausted all day with insomnia at night so I guess that's a start.

Yesterday, I took the pill around 9AM. My hands were shaky most of the morning.  A pool side cocktail seemed to calm me down though.  Maybe it was the sunshine, maybe it was the vodka.  Who knows!  Still couldn't sleep last night but I skipped the LDN since it was so late when I finally crawled in bed and that whole "only take between the hours of 9PM and 2AM" thing.  

I had to be up at 8 this morning and after just a few hours of sleep, I feel pretty good.  Considering how rowdy we got yesterday, I'm amazed.  My girlfriends are jealous.  haha.  

I have been extremely productive today so I can't complain.  Hopefully the sleep fairy will visit me tonight and I'll be all refreshed by the time my husband arrives on Thursday.  

Side Effects noticed so far:

Decreased appetite

Less hair loss

My skin seems to be sloughing off which is good.  I've always had very dry skin. 

Increased energy

Increased focus

increased sweating (YUCK)

[hashingonhashis]

What do crazy people do when they can't sleep?

They start a tumblr about their autoimmune disease.  But hey, NO CANCER and I get to keep my whole thyroid.  Woot!

[hashingonhashis]

Days 1 - 3 with Low Dose Naltrexone

Dr. Evans warned me that there would side effects. Strange lucid dreaming was the main complaint for most patients. I should wake up feeling refreshed and it will help with the Chronic Fatigue Syndrome, CFS. LDN, when prescribed in high doses, is for those who are dependent on opiates or alcoholics. I am neither of the two but it’s also shown, in low dose, to help stop the antibody levels from rising and actually will make them fall, thus reversing the Hashimoto’s Disease. For those who are curious… my TSH level at this point in time is 6.61. My antibody level is greater than 1000. My doctor would like my TSH level down to 1.5-2 and a normal antibody level is under 35, 5 being ideal. We’ve got some work to do!

My frist night on LDN was August 29th. I took the pill at 9 PM, with no alcohol as instructed. A few hours later, I was ready to sweetly slumber. Sweetly slumber, I did not. The lucid dreams were scary. I felt like I was awake and I thought I was awake but I wasn’t and it was freaking me out. I woke up at 1AM and was terrified to go back to sleep until around 3 AM. I woke back up at 10 and said “screw sleep….who needs it!” and rolled over to take my morning T4/T3 compound. UGH. I was TIRED.

30 minutes later, I had breakfast along with my Vit. D supplement and Adrenal Support. 10 minutes later, I was ready for a nap. I pretty much refuse to nap anymore. The last thing I need is to be on a wonky schedule. I wanted to be thoroughly exhausted when it came time for the LDN. Besides, I had a handy new neuro B-12 pill to give me a little pep in my mid-day step.

That night, I fell asleep around 12 with the help of half a benadryl. At 4, I was wide awake. And annoyed. NOT NORMAL. I took a tiny piece of xanax at that point and hoped to get some good, hard sleep. Then the dog got sick so I had to take care of her until about 5:30. I was beginning to feel like I couldn’t win this game. Eventually, I was able to sleep for about 5 hours.

TONIGHT. SHOOT ME. PLEASE. At 5 o’clock this evening, I was EXHAUSTED. I had to force myself to stay awake until 9, when I’m supposed to take the pill. (something about the hours of 9-2 being some something or other…. scientific shit, ya know?) I also took a benadryl, hoping that it would make me tired enough and we could avoid the creepy lucid dreams.

Guess what? It’s 2 AM and I’m wide awake. I’ve done my guided meditation for sleep, which is like my total go to, and NOTHING. I actually heard the whole recording. TWICE. I never make it past 15 minutes.

Now, I’m sitting in my office cursing LDN. How the heck does it help with Chronic Fatigue IF I CAN’T SLEEP AND THEREFORE FEEL FATIGUED?! I don’t get it. I wouldn’t care so much if I didn’t have to be up at 9 with a full day of pool party and labor day awesomeness to attend.

Too long; didn’t read? I hate LDN. I know my body will adjust eventually but yo, I’m tired. Welcome back insomnia. Yay.

[hashingonhashis]

History

I guess I should start with a little back story.  Three years ago, I started having horrible migraine headaches.  I had more days with headaches in a month, than I did headache free.  My neurologist suggested I have a physical done and referred me to his families Internist.  The results of my labs were that I had hypothyroidism (TSH level was above 7).  The doc put me on #Levothyroxine and said I probably wouldn't feel any better but at least my thyroid would be regulated.  Uh, so what's the point doc?  At a follow up appointment 6 weeks later, I asked my doctor if I'd have to be on this synthetic hormone for life, as I didn't really like the idea.  He said yes, because I have antibodies attacking my thyroid, blah blah blah.  At that appointment, my TSH levels had come down to 3.54 and I guess that doctor was happy with that number.  Different doctors will tell you different numbers but anything above 3 is still considered hypothyroid.  

About a year in to taking the levothyroxine, I noticed I wasn't ovulating. This was a problem since my husband and I wanted to start a family.  I quit taking the synthetic hormone and everything returned to "normal".  

Fast forward 2 years.  I felt like crap.  I was spending more days in bed than out.  I was suffering from migraines again and totally isolating myself.  For awhile, I blamed a miscarriage in 2012 on how I was feeling but after awhile, that just doesn't fly anymore.  Not for me, anyway.  What really alarmed me were my memory issues.  I've always had an incredible memory and the fact that I couldn't recall recent occurrences really bothered me.  I finally started digging around on the internet and found a place locally that specializes in Thyroid and other autoimmune diseases.  

I requested all my old labs from the Internist and went to my next appointment.  Based on old lab tests the new doctor diagnosed me with Hashimoto's Disease (antibodies attacking the thyroid) and Chronic Fatigue Syndrome.  She started me on a T4/T3 compound for the Thyroid and Low Dose Naltrexone, aka #LDN and sent me away for LOTS and LOTS of lab work.  And that my friends, is where my journey really begins....