Showing posts with label thyroid disease. Show all posts
Showing posts with label thyroid disease. Show all posts

First update in years!!

>> 3/21/18

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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Endocrinologists

>> 11/7/13

I am at the doctor's for my asthma this morning and she feels my neck, notices how enlarged the thyroid area is and asks me if I see an endocrinologist. Pfft. Aw, heck no. I stay WAYYYYY the heck away from those.

I've found the best doctors for my thyroid have been regular family doctors who are willing to listen to me, willing to acknowledge my symptoms and treat according to symptom.

I'll likely never see another endocrinologist - EVER. Nothing but bad luck seeing them and YEARS of feeling terrible because they didn't treat my thyroid disease right.

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Medication Update

>> 8/27/13

So far, the two week periods have held off.  *whew*  Maybe that means my thyroid medication is leveling off somewhat?  I know it's not right entirely yet because there are days I feel like I am going to jump out of my skin.

I'm still missing something. Selenium? Magnesium? Iodine? Vitamin D? All of the above? I don't know.

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Last Phase of Weight Loss: Starting Aug 23rd

>> 8/11/11

In a little more than a week, I am going to finish up with the weight loss.  This is my last step to my final goal!!  After getting the correct thyroid medication, I lost about 20 pounds.  Unfortunately, the rest of the weight was being stubborn.  I followed The 17 Day Diet: A Doctor's Plan Designed for Rapid Results earlier this year and lost nine pounds in 17 days (could've lost more if I hadn't cheated).  I wasn't sure if I wanted to lose anymore or keep going.  I've kept it off this year AND don't need sugar like I used to.  I don't put it in my tea or cereal.  So happy!

So, when school starts, I will start my final step in my weight loss goal.  My kids will go to school and mom will go to work - literally, I am back to working from home and working on my health/weight!  I turn 40 in October and I REFUSE to turn 40 out of shape.  It won't happen.  It can't happen.  I'll be crying enough on my 40th birthday as it is:)

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Doing Great!!

I have updated thyroid labs to post but I need to dig them out so I'll do that later.  I'm doing great.  My doctor is awesome in treating my thyroid.  I've kept the weight off that I lost earlier this year.  I've started making jewelry. I've made ear rings out of guitar picks and bracelets for girls' birthday gifts for my kids to bring when they're invited to birthday parties.  I can't believe I actually have jewelry making tools. I've never been handy. I think it is because I've not had the opportunity so now I'm learning. Last week, I even learned how to change the flapper and handle on the toilet all on myself. Boy was I proud of myself!

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Dropped Below 150 Pounds

>> 12/11/10

I've finally dropped below 150 pounds as of this morning!  Talk about psyched!  My goal is to reach 133 pounds, but it is really going to depend on how thin it makes my legs look.  I don't want sticks for legs and at 5'7", I might get sticks for legs if I lose too much.  I want to keep some curves.  With eating a bit healthier and an increase in my T3, it's going great!  I haven't needed to break out the Lipofuze!

I'm feeling pretty good thyroid-wise as well.  My hair loss has slowed down.  My skin is getting worse though but I think that has a lot to do with the heat being on for winter. 

I haven't had a gallbladder attack in a few weeks either.  Every time I've had one, I've had potatoes that day.  I really think that's my trigger.

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It's Official - My Weight is Going Up

>> 10/22/10

My weight has been slowly increasing over the past six months.  A tenth here, half a pound there, pound here.  Well, out of the 18 pounds I lost, nine of them are back!

My husband says I should manage my thyroid disease myself because that was when I felt better and lost weight - without a doctor. If I don't start losing weight, I am going to weigh as much as my husband very soon and I definitely do not want that. I could review the best diet pills for women but I don't need an appetite suppressant. My appetite isn't the problem. It's my metabolism that just doesn't work anymore.

I'm not sure what to do about managing it - with a doctor or without a doctor?

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Stress & My Thyroid Disease

>> 10/14/10

Moving back to our home state also brings with it HUGE stress in the form of my husband's ex and her sister.  That bodes well for my thyroid disease, eh?  More stress!

I've been harassed by one of them before (and if there'd been security cameras she would've been arrested for assault) when I was pregnant and got punched in the lower back at my stepdaughter's dance recital (what kind of person PUNCHES a pregnant woman in her lower back?).  Now that I'm not pregnant, I am thinking she'll keep her distance.  I don't think she'll harass a woman who can actually protect herself now that she's not protecting an innocent unborn baby any longer.

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I Hate My Thyroid!!

>> 9/22/10

I feel like I'm stagnant.  Stagnating in the wrong spot - at my weight, at my health.  I don't feel like I'm improving anymore!  I am SO frustrated with my thyroid!  Why is it so hard to manage?  Is this little organ that difficult to understand?  Seriously? 

I have to admit that my weight gets me the most.  I just don't like feeling large.  Yeah, I was one of those skinny witches all my life who used to be able to eat whatever she wanted and never gain an ounce and darnit, I want to at least be a normal weight.  I don't even have to be one of those skinny witches again!  I'll take just healthy!

I never thought it'd take this long to manage my thyroid.  I've had thyroid disease for nine years now and it's still not managed right.  So depressing.  I don't think that weight loss pills that work fast will make any difference for me as long as my thyroid is not managed correctly.

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Hate the Way I Look

>> 9/7/10

I am so disgusted everytime I look in the mirror. 

Things are just not going well with my thyroid right now.  I am beginning to think that while this doctor knows where my levels should be, he doesn't really know how to get me there.  I am gaining weight again!  After losing a chunk of it, it is frustrating beyond belief to see it come back. 

I don't even want to plan a Branson vacation or to any other destination because I hate the way that I look. I want to feel good about myself again. This really stinks. I am so tired of nobody knowing how to manage thyroid disease. Seriously, it doesn't seem like it should be that difficult. I know what I need...why don't the doctors?

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Big Day Tomorrow

>> 6/9/10

Tomorrow is the big day.  I go to see my doctor again for my thyroid (and pelvic inflammatory disease).  I printed out blank calendars from April to June and wrote the symptoms and issues I was having around the correct dates to give him a timeline.  Between my thyroid symptoms, temperatures, and pelvic inflammatory disease and hospitalization, there was just too much to remember.  Between my posts here, my cell phone list records, and facebook, I was able to piece it all together pretty accurately.  Technology can be great:)

My memory has totally been blanking out on me the last few days.  I go to do something or tell my kids something and whatever it was I was going to do or say just disappears in my mind.  I can't stand that! 

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No Thyroid Blood Tests Ordered

>> 6/5/10

I didn't get the blood tests done that were ordered.  I thought they were thyroid blood tests too but when I looked at the lab order, it was only for ferritin and vitamin D3.  I already know those are low and don't need to pay for the lab tests to tell me that right now.  The doctor must've meant it when he said he'd treat my thyroid by symptoms because he didn't order any thyroid blood tests. 

I was really hoping that I would have seen better results with this new doctor.  I was doing better on my own, when I was ordering my medication from Thailand, than I am now.  I thought by my family reunion in a month, I'd be real close to my target weight.  That's just not going to happen now.  It's hard for me to follow or find diets that work because I am such a picky eater. I really thought my thyroid would be under control by now and the weight gone. How depressing. I don't want to see family next month, that I haven't seen in years, several sizes larger than I was the last time I saw them.

I see my doctor Friday.  I also need to make note for him that my menstrual cycle is way off and starting 1-2 weeks early now.  That's really annoying.  Hormones are difficult.

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Blood Tests Tomorrow

>> 6/3/10

Tomorrow morning I go for blood tests to check my thyroid, vitamin D3 and ferritin levels.  I know the Vitamin D and ferritin will still be low.  I am hoping my thyroid tests are low as well so he increases my medication.  He told me before he'd do it by symptom but when I called him six weeks ago miserable with a host of hypothyroid symptoms, he didn't do anything about it then.  Maybe he's going to need to see labs AND symptoms to raise my thyroid medication dosage.

I'll crawl off my uncomfortable mattress in the morning and hit the lab first thing. I need to remember NOT to take my thyroid medication in the morning so it doesn't skew any of the lab results.

*fingers crossed* that these labs get my compounded Armour medication dose increased!

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Nothing Positive for My Thyroid Issues

>> 6/2/10

Well, getting Pelvic Inflammatory Disease certainly didn't help the way I've been feeling the last couple of months.  I have nothing positive to report on the thyroid front for me right now.  My weight isn't going down.  I was tired, cold, and had the memory of swiss cheese before I got sick.  Not being able to eat for a week and being so sick certainly didn't improve any of those problems (you'd think not having food for a week would help me lose weight but I still look like I need help with Lipofuze).

I have to go Friday to get blood drawn to check my thryoid, ferritin and Vitamin D3 levels for my next thyroid appointment a week from this Friday.  I know my ferritin and D3 levels will still be too low.  The antibiotics I've been on the last couple weeks make me so sick, I didn't add any supplements to the mix because the iron makes my stomach burn.  Who wants that when you're already trying to hold your meals down with mind over matter already?

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Symptoms Back and Temps Falling

>> 4/25/10

I didn't maintain the half grain increase from a couple weeks ago for my compounded Armour.  I wanted doctor's approval for it so I called there the other day and left my symptoms with the nurse (cold, exhaustion, brain fog, and eczema back and a couple others I can't remember right now...brain fog is wonderful isn't it?).  I could also add a small weight gain (the best weight loss pill are looking good about right now) and a heavy period again into those symptoms. They called me back and said the doctor wants me to take my under-arm temperature in the morning for five mornings with a glass thermometer and then call them with the results. 

So, my results so far for temperatures are:

Saturday:  97.2
Sunday: 97.4

He told me at my last appointment that they would base my dosage on my symptoms.  I thought my initial symptoms would have been enough but I guess they want temperature too.  Time, time, time.  I just want to shoot ahead with my increased dosage and be done with it but maybe he's looking at the adrenals as well?  I'll know in a few days I guess.

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Thyroid Memory Problems

>> 4/1/10

One thing about having kids and health problems is that it brought to the forefront how important it is to take care of our children if something happens to us.  We got both term life insurance quotes and regular life insurance quotes on the both of us. Then we actually bought both types of policies.  I am thinking about converting our term life over but I need to learn more about the benefits first. 

I actually studied to sell life insurance but never went ahead and got my license.  That's sad that I can't even remember what the benefits are of one policy over another.  Hopefully when my thyroid gets fixed, my memory will come back!  I used to have a very good and very long memory.  Now I have holes where my memory used to be.  I have faith that my new doctor can fix me though.

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Reverse T3

>> 3/16/10

Well, the hospital failed to send my lab results to my doctor that were done almost two weeks ago so the only lab I have back is my Reverse T3 lab.

Results:    53  (normal range is 11-32)    High

So I googled REVERSE T3 (and Reverse T3 Dominance) since I wasn't sure what this could mean.  Here are the notes I jotted down:

  • Causes metabolic break
  • Hypometabolism
  • Reverse T3 (RT3) is the non-active form of T3 that is similar in composition to T3 (the active form).  Because it is so similar, it fits into the receptors where T3 should go, taking its place.  Therefore, the non-active form is in the place where the active (T3) form should be.
  • Reverse T3 is a T4 metabolism malfunction (T4 is supposed to convert into T3 and some RT3 but when too much is being converted into RT3, it creates problems).
  • Caused by prolonged stress, which increases cortisol, which interferes in the conversion of T4 to T3.  (Huh...years of dealing with hubby's ex will do that to a person.) 
  • If blood tests show T3 and T4 levels in blood are within normal range, a reverse T3 problem will result in continued hypothyroid symptoms because the T3 circulating in the blood isn't the same as the T3 at tissue-level (where the RT3 takes the place of T3 in the body's cells).
  • RT3 dominance
  • Some web sites indicate a slow-release T3 (like cytomel) is needed while others say it isn't.  Taking regular T3 is ok if you break it up into 4-5 doses per day.  I will have to wait to see what my doctor thinks once the rest of my results are in.
So all these years of complaints to my various doctors about continued hypothyroid symptoms despite my other thyroid levels being ok (according to the blood tests and docs) may have been cleared up with a simple Reverse T3 blood test?   For more than eight friggen years?  That makes me angry.

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Book: Iodine Why You Need It, Why You Can't Live Without It

>> 2/2/10

I became interested in learning more about the importance of Iodine after corresponding with people who claimed that by taking Iodine daily, they had shrunk their thyroid nodules and goiter.  Since I have both, I was very interested in finding out more.

I read Dr. David Brownstein's Iodine Why You Need It, Why You Can't Live Without It.  I actually bought the book when there wasn't a library in all of Ohio who could get it for me (seriously, they checked through their inter-library system).  I am glad I bought it because it is a book to have on hand to go back to.  I read it for the information on how Iodine helps the thyroid but it also talks about its role in breast cancer, prostate cancer, fatigue, detox, skin problems, and more. 

My new doctor was very familiar with the importance of Iodine and supports my taking Iodoral daily.  He did state he doesn't feel that it will shrink anything but does feel Iodine is important.

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Think I Found a Good Thyroid Doctor; Great Thyroid Update

>> 1/25/10

I had my doctor's appointment on Thursday with the new doctor to manage my thyroid.  I think I found a good one.  Finally!  This doctor sat and talked with me for over an hour!  That doesn't happen very often.

First, everything that I had told the endocrinologist (that the endocrinologist wouldn't do), this doctor agrees with me on!  I wanted my T3 raised.  The endo said no.  This doctor increased my medication my 60 mg of compounded natural thyroid a day.  I go back in three weeks where he said he'll probably bump it up again, depending on how I am feeling.  The endocrinologist wanted to reduce my thyroid medication (to increase my TSH levels).  I would've felt even worse!  The goal is to increase my T3 levels into the upper part of the normal range.

The endocrinologist, when I complained of not feeling well, always feeling tired with no energy and achy, said I could have chronic fatigue syndrome or fibromyalgia.  He completely ignored HIS OWN LABS that showed I was anemic.  Combined with low T3 levels, it's no wonder I didn't have any energy.  My Vitamin D levels were also very low (again, the endo. ignored his own labs). 

I told my new doctor that I was taking Iodoral (iodine).  He wants me to continue taking it daily. 

It was nice to go into the doctor's office and be heard.  It was nice to tell a doctor every symptom and be believed.  Not only believed but proactively helped.  I walked out of the endocrinologist's office angry and frustrated.  I walked out of my new doctor's office happy and full of hope that I'd finally start to feel like me again.

I go back for a 3 week check up in February and then get labs drawn in two months to see where I'm at in terms of medication dosages, etc.  The labs will be for:  TSH, Vitamin D, Ferritin/Iron & TIBC, Free T3, Free T4, Total T3, Reverse T3, Thyroglobulin panel and thyroid perioxidase microsomal antibodies (for the Hashitmoto's).

When I was done with my appointment, they handed me a print out showing all the medications and dosages, my vital signs for that appointment and what the plans are for follow-ups and labs.  Very cool!

Also, I am taller than I thought.  I don't think I've had my height measured since I got my first driver's license.  Instead of the 5'6" I thought I was all this time, I am 5'7.5".  That's WAY cool.  I always wanted to be 5'8" and now I'm close enough.

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My Thyroid Still Works!

>> 12/3/09

I've recently read that our thyroids produce about 300 mcg of hormone a day. Based on my old Synthroid dose of 112 mcg, that means that about two-thirds of my thyroid is still working!?!? Those are the highest doses for both Armour and Synthroid so that sounds about right.

My sister-in-law didn't think my thyroid was working much because she doesn't have a thyroid and she was on the same dose of Synthroid as I was. However, it appears that parts of my thyroid are still alive and well! Yippee! That's great news.

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