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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Check Up Time

It's time for my thyroid check-up, I guess.  I called my doctor to have him call in my prescriptions and got a call back that I have to get blood tests done and come see him again. *sigh*

When I'm feeling fine, and obviously managing my thyroid just fine, I hate this waste of time and money. 13 years of thyroid disease...that's a lot of doctor appointments and tests.

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Increasing Naturethroid dose - a doctor who LISTENS to me

My doc did what I asked.  He raised my Nature-throid dose based on my last results (see previous post) and now I can see if I can lower or get off that T3 completely. I will take 1-1/2 grains of Nature-throid three times a day and see how I do.

I had lost eight pounds since my last appointment with him so that was fantastic.

I seem to be converting Nature-throid better to T3 (I can't convert Synthroid's T4 to T3...reverse T3 issues for me) so let's see if this works.  I'd love to get off the synthetic T3 entirely.

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Thyroid Labs: Waiting, waiting, waiting

I had my labs drawn the other day. My doctor only ordered TSH so I had them add T4 and Free T3 too, along with cholesterol.  We'll see what is what on switching over to Nature-throid this week!

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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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Hypothyroid: Hair Falling Out

Another hypothyroid symptom I have been experiencing, besides the weight gain and the need to look at fat burner reviews, is that my hair has been falling out.  It's all over me when I brush my hair, shower, etc.  Everytime I feel more strands caught on my arms, I get upset about my thyroid. 

I don't know if it is the reformulated armour that is the problm or the fact that I convert T4 into RT3 instead of T3.  My doctor thought that conversion problem would go away when he switched me to armour but I won't know if he was right until after my blood tests next week testing my RT3 levels.  I never thought I'd be anxious to have my arm stabbed by a needle!

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Overcoming Thyroid Disorders by Dr. David Brownstein

I just finished reading Overcoming Thyroid Disorders by Dr. David Brownstein. It has some very good information in it if you are one of the thousands who just don't feel good on the synthetic thyroid medication your doctor has you on now.

There are chapters on: hypothyroidism, Poor T4 Converters & Thyroid Hormone Resistance, Thyroid Replacement Options, Hyperthyroidism and Autoimmune Disorders, Fibromyalgia and Chronic Fatigue Syndrome, Adrenal and Gonadal Hormones and their Relationship to the Thyroid, Diet, Detoxification, Coagulation Disorders, Iodine and the Thyroid Gland, and the Glycemic Index.

I came across some information that I made note of to research a little, such as Dr. Broda O. Barnes (researcher in field of thyroid/endocrine imbalances). There is a foundation named for him that I am going to research as well. Dr. Barnes said in the 1960's that two things would change forever with diagnosing and treating hypothyroidism and that was the use of the blood test to diagnose (instead of using symptoms as well) and the use of the synthetic thyroid hormone (such as Synthroid).

I am wondering, after reading this book, if my low T3 numbers was due to an inability to convert the T4 (from the Synthroid I was on for seven years) to T3 properly. My new doctor has kept me on that same Syncrap dosage I've been on forever but he's also added 120 mg compounded armour thyroid daily as well.  I wonder if he's trying to override a resistance to conversion.  My labs next month will tell I guess.

Another thing I learned from this book is that Synthroid has lactose in it.  I'm lactose intolerant! Also in Synthroid according to Dr. Brownstein is cornstarch and dyes including aluminum lake.

Aspartame:  According to this book, aspartame is metabolized into formaldehyde.  He believes aspartame may contribute to autoimmune thyroid problems.

I don't have fibromyalgia (though the last endocrinologist tried to tell me I did before he even examined me) but Dr. Brownstein's book addresses fibromyalgia as well. He believes it is impossible to improve fibromyalgia if the thyroid gland is messed up.  He said he's found 80% of patients with fibromyalgia have hypothyroidism (and many are undiagnosed because of the failure to get the correct tests and read the labs correctly).

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Iodine, Celtic Sea Salt & Fluoride

I have taken the next step to helping myself. A thyroid needs iodine in order to function properly. I've also read that there may be a link between breast cancer and being iodine deficient as well as iodine being used in the treatment of breast cancer. It's very interesting reading and one I am going to look into more.

We don't get what we need from table salt as it is refined. I've also read by some that it is considered toxic.

Another problem that I've read concerning iodine is about fluoride and how our bodies can confuse fluoride with iodine, displacing it in our body. Fluoride is in a lot of water, toothpaste, dental treatments, and my children's school even gives fluoride treatments once a week to the students (they call it "swish"). If fluoride is doing this, it can lead to thyroid problems. According to PFPC, fluoride poisoning symptoms are very similar to those of hypothyroidism.

I am going to start supplementing with iodine, to see if it improves some of the symptoms of my hypothyroidism, goiter, and nodules. I ordered the Iodoral (iodine) and some celtic sea salt. I've replaced my toothpaste with a fluoride-free toothpaste (and studies are starting to show that fluoride isn't preventing cavities the way it is touted to so at this point, I'm ok with going fluoride-free to see if I start to feel better). Luckily, where we moved to, our water is already fluoride-free so I don't need to worry about the water supply.

I'll do this for a bit and see if I start to feel better. I'll start slow and at the lowest dose. Then, I'll go visit my friendly medical personnel in lab coats and see if any of my lab levels have improved.

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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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