First update in years!!

It's been more than a couple years since I've posted. So much has happened since.

First, my oldest was diagnosed with thyroid cancer in 2016. She was 19 at the time of diagnosis. This diagnosis came two years after I kept bringing up symptoms to her doctor that I thought were thyroid related and they blew me off. Repeatedly. I finally asked her gynecologist to run a blood test. Guess what? Yup, thyroid disease. I took those results back to her doctor and she felt her thyroid, turned to me, and said, "Her thyroid is swollen. Do you see that?" Are you FREAKING kidding me? I was livid. An ultrasound and biopsy later, we had a papillary thyroid cancer diagnosis on top of thyroid disease. They removed her thyroid and treated her with RAI (radioactive iodine) to kill off any remaining thyroid cells remaining after surgery. She gets bloodwork done every six months (regular thyroid hormone level tests plus thyroglobulin to check for cancer reoccurrence). It can come back. There is no remission since thyroid cells can always grow (bringing the cancer with it, I guess). She'll have to have labs done for the rest of her life to check for cancer reoccurrence. Because of the RAI, she is also at higher risk for developing secondary cancers down the road and will take thyroid medication the rest of her life (the goal is TSH suppression to keep cancer away).

Learning your child has cancer? Hell.

Telling your child she has cancer? Hell.

Leaving her room when they were taking her to surgery? Hell.

Letting them put radioactive iodine into her body to kill off her current cancer, and hoping it wouldn't bring a secondary cancer down the road? Hell.

My youngest, who was ten at the time, was also diagnosed with thyroid disease at the same time as my daughter's cancer diagnosis. Her pediatrician tried to blow it all off but I insisted on testing. I was right to insist. She is also on thyroid medication the rest of her life.

Three weeks after my daughter finished her thyroid cancer treatment, my kids' school had a school shooting. Three of four of my kids were there. My middle daughter was a couple classroom doors down from where the shooter shot a student and was shooting into classrooms. The kids either broke through windows and jumped out or ran down halls and into fields as far as they could go to safety. The PTSD from that took a few months to get through for my girls. Loud noises were hard. If somebody slammed a door, the look of terror in their eyes was horrible because to them, it sounded like a gunshot. My son seemed like he handled it ok but he also developed chronic physical hives to heat (hot car, blushing, etc.) afterward so I'm not sure he handled it as well as he thought he was handling it.

Then! Oh yeah, there's a then! My youngest was in a school bus accident. She is in physical therapy twice a week as they try to fix the damage this inept bus driver caused. It's been four months and there's not a day that has gone by without pain. Not only did they not check students for injury, they moved them to another bus and went on with their route before the police even arrived at the accident scene!! You'd think our school was being run by a bunch of gomers. You'd be right.

The last few years? Hell.

My thyroid disease? I was doing great until I made the mistake of leaving the "good thyroid doctor" for a doctor closer to home because he agreed to keep the meds the same for that that the "good thyroid doctor" prescribed. Problem? He then retired. The latest doctor cut my thyroid medication down more than half! Talk about going hypo and hashi crazy since Fall. He managed to ruin nine years of feeling good in only a few months. Not only did I gain 25 pounds and become very exhausted, my thyroid or goiter or something is so inflamed that it is pressing on my vocal cords or something because I can barely talk. I haven't had a voice in several months. My husband says I sound like a squirrel. When I went to the doctor a few weeks ago to tell him and request my old dose back, he didn't believe me. He said it was "drainage". FOR MONTHS? I won't be going back to him.

I have since increased my thyroid med dose back to what it used to be on my own and my voice is starting to come back. Instead of sounding like a squirrel now, I sound more like a boy going through puberty with voice cracking but it's coming back.  I feel like I'm coming out of a fog. I can't get into a new, functional medicine doctor until May (meanwhile, I'm trying to get back into the "good thyroid doctor" but they're not taking more patients right now).

So, that's the not so short and not so sweet update. Despite everything, my kids are awesome kids. They're doing well in school and growing into great adults. My husband is always such a sweetheart.

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Reduced my T3, Not Good

A few months ago, my thyroid doctor reduced my T3 medication by 20mcg per day.  Let me tell you what a HUGE difference it made - negatively.

Prior to the reduction, I felt great, weight was awesome, periods were right on time and not painful, my memory was great, I wasn't losing abnormal amounts of hair.  (So, why did the doc want to reduce it?  He thought my T3 was high - I think it was lab error myself because I had no symptoms of excessive T3 and felt the best I'd felt since being diagnosed with hypothyroidism and Hashimoto's Thyroiditis).

After he reduced it, my hair started falling out - again, my weight increased - again, my memory loss came back - again, and my periods were late and whacked. I went through two bad periods before I said to heck with it and increased my own dose back to what it was (they come in 5mcg pills so it's easy to do).

So, my current thyroid doses are:

• Synthroid (T4) 75 mcg
• Liothyronine (T3) - 45mcg, twice a day

I absolutely need that T3 at the higher dose.  I have a Reverse T3 problem. I finally felt great...and then it all went to heck.  Now I wait for it all to get back to what it was before.  My problem now is the memory lapses while trying to get back to how I felt before - - I keep forgetting to take my medicine! 

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Wasted 30's?

I realized something yesterday as I was thinking about (hoping) that this new doctor was going to change things for me for the better where my thyroid was concerned.  I realized that if he does and I am finally feeling like myself again (without the hair loss, weight gain, brain fog, swiss cheese memory, moods/depression/low energy, dry skin, cold intolerance, etc.), that all of my 30's (I am 38 now) would have been spent unhappy about how I felt and how I looked.  All that crap affects my parenting so it wasn't just me who lost out, it was my kids and husband too.  They didn't get the whole person.  They got bits and pieces of me. It would be a shame that if there was a possibility that how I've felt (and advised doctors time and again to be ignored) can be improved by something as simple as natural thyroid medication and supplements (iodine, iron for low ferritin levels and different vitamins in my case), shame on all the doctors who left me to feel like crap all these years and shame on every doctor who doesn't do more for their patients than hand them a Synthroid prescription and tell them it is all in their head or their health problems are related to other conditions when it was all thyroid-related and thyroid-medication-related all along.

Managing the thyroid correctly has also helped many women struggling with infertility.  We had one more child after I was diagnosed hypothyroid and with Hashimoto's and it was very difficult to get pregnant.  When I think about the 18 months that we spent trying to conceive our youngest daughter (all the tears, frustration, almost having to get expensive fertility treatments) and how something as simple as the natural thyroid medication could have made all the difference.  It has helped so many women manage their thyroid better enabling them to conceive easily again.  Why won't more doctors educate themselves?  Are they so far up Big Pharma's backsides that they ignore the actual treatment of their patients?

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New Doctor Check-Up Went Good

I had my second visit with my new doctor on Friday.  He raised my compounded Armour Thyroid dosage again based on symptoms. That puts me at 112 mcg Synthroid (Syncrap) and 120 mg Compounded Armour.  My next visit is March 12th.  A few days before that appointment, I get lab work done to see what adding the Armour Thyroid to my current Syncrap has done for my numbers.  My weight showed a two pound weight loss from the last time I was at his office a few weeks ago so the weight loss is going slower now (because I'm back on the Syncrap but because he added compounded Armour, I think the weight will continue to fall off). 

I asked my new doctor if there would come a time when I could stop taking the Synthroid. He said he wants to see what my next labs look like first (which is only three weeks away!).  Yeah!!

With the increase in my armour thyroid on Friday, my eczema has improved a lot in just two days!  In fact, I'd forgotten I even had it and missed putting the cream on it Friday night and Saturday.

I wondered if I'd start feeling hyper symptoms by adding 120mg armour thyroid on top of my Synthroid medication, but there haven't been any. 

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My Health Update

I've been slowly changing over from my synthetic thyroid medication to a natural dessicated thyroid medication over the last couple of weeks. I'm doing fine on the transition - no hyper symptoms like increased heart rate. No panicky feeling at all.

I've finally lost a few pounds so I think the T3 in the natural medication is better for me personally! I lost five pounds when I did this before (but my medical doctor freaked out over it - natural medication - so I stopped until I found the information I needed to manage my thyroid better myself).

I was taking iodine and am using Celtic salt during that time as well but I haven't been consistent with that yet. I guess it's a routine I have to create and get used to and I forget about the iodine more often than not (thyroid brain fog doesn't help me remember;). Once I get onto the Iodine routine, I'm hoping the goiter and nodules will shrink.

Hopefully the weight loss continues!

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What I Have

I have thyroid disease. I have Hashimoto's Thyroiditis and hypothyroidism with goiter/nodules. I have several nodules on my thyroid that I had biopsied for cancer years ago. Because you can only get a small percentage of cells out of millions during a biopsy, even a biopsy isn't 100% accurate, which still leaves me to wonder. Hashimoto's Thyroiditis is an autoimmune disorder.

Despite blood tests showing me within normal range, I still suffer from brain fog. My memory, which used to be very sharp, is now like swiss cheese. I lose my train of thought often. I forget things very easily. My skin is terrible - very dry and prone to contact dermatitis. My hair, which was never smooth to begin with, is more coarse. At least it's not falling out anymore though (which is a symptom by the way). I used to be a skinny chick - - now I'm overweight and having a difficult time with how I look and feel about myself. My metabolism is next to nothing anymore. Exercising leaves me winded within the first couple of minutes. I am more irritable with less patience (I didn't have that much to begin with so that's bad). Even a "normal range" blood test does not mean all the symptoms go away.

If you are looking for a source of information, check out About. I am currently reading Thyroid Solution: A Mind-Body Program for Beating Depression & Regaining Your Emotional & Physical Health and have found a few good points that I will post about in another post soon.

A really good book that I've read is:

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When My Thyroid Betrayed Me

Three months after the birth of my third child, I didn't feel well. My neck was sore and I had a fever. My neck was really bothering me so I started feeling around. I became very scared when I felt lumps in the front of my neck. At the time, I had three young children (all under four years old) and hoped the lumps weren't cancer. I didn't want to leave my babies so young.

I went to my family doctor who did the blood tests to check my thyroid. Her diagnosis was Hashimoto's Thyroiditis, Hypothyroidism & Goiters. I had several nodules on my thyroid. She prescribed Synthroid and referred me to an Endocrinologist.

At the Endocrinologists, they biopsied my nodules and put me on the schedule for regular check-ups. The nodules were negative for cancer. They stabilized my medication dosage over the coming months. They said the goiter/nodules would go away once the medication was stabilized, but they never did. My hair stopped falling out but the holes in my memory continued. I couldn't lose weight. I was tired and just felt off. The Endocrinologist, going by my lab results, said everything was fine. I didn't feel fine. This went on for five years.

Then we moved. I went to my daughter's new ENT (ear, nose and throat doctor) who did an ultrasound and blood work. He said he could biopsy it again (at that point, it'd been about five years since my last biopsy), however, he didn't hold a lot of faith in the biopsy. He said out of the millions of cells in the area, the biopsy only grabs a small bit of those. It can get cells that aren't cancerous, but it doesn't mean that cancerous cells aren't present or that the nodules aren't cancerous. He didn't biopsy.

Because we moved, we had to find a new family doctor. My weight has continued to increase. She said she could manage my thyroid problems. Like the Endocrinologist, she manged it according to my lab work and didn't pay any attention to my continuing symptoms over the next two years. My most recent labs (from last week) are like this:

• My TSH: 3.70

Their lab is using the old recommendations for TSH. The old recommendations were 0.35 to 5.5 ulU/ML. The 2003 recommendations from the American Association of Clinical Endocrinologists is 0.3 to 3.04.

• My Thyroxine: 5.2

Recommended normal range is 4.9 to 10.9 UG/DL. I am at the low end of "normal".

• My T3, Free: 2.80

Recommended normal range is 2.3 - 4.2 PG/ML. I am at the low end of "normal".

The letter from my doctor that came with my lab results says my levels are great. I don't feel "great." I feel bad. I feel fat. I feel clueless when I can't remember what I planned to do 30 seconds ago because my memory is like swiss cheese.

The crowning moment from this last doctor visit is that my weight went up even more. I'm at 172 now. The only time in my life I've weighed this much was when I was pregnant. So when I received this letter talking about how great my levels were, I held back tears. I've held back tears for the last two days. I'm not asking to be a size 2/4 again. I'll take an 8! They now say they will refer me to an Endocrinologist (after they get their own ultrasound...not sure why they just can't let the Endocrinologist handle it). My referral is being held hostage until after I get the ultrasound (which is scheduled for Tuesday).

I just want to have some resemblance of who I used to be. I feel lost. I feel fat. I feel helpless. I feel like an airhead who would forget her head if it wasn't screwed on. I feel like I'm just a piece of paper showing my lab results and the rest of me doesn't matter. I want a doctor who will listen to me and treat ME, not just the lab results.

To read a little more of my past thyroid posts, they're here. I've created this blog you're reading now to be just about the thyroid and will post about it here from now on.

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