Hair loss...

One of the symptoms that precipitated my recent ultrasound/RAIU test was excessive hair loss. It's normal to lose a few hairs here and there and I can accept that. It's when you are washing your hair and squeezing out the water and your hand comes away with a collection of hair the thickness of 2 or 3 toothpicks that you panic. This was happening on a daily basis back in October/November so I mentioned it to my doctor (GP). That's when he suggested the ultrasound to see what may be happening with my thyroid. My blood tests were in the normal (lab) ranges at the time. (TSH = 1.19)

I've found a site online that discusses things you can do to stop hypothyroid related hair loss. http://www.thyroid-info.com/articles/hairloss.htm

I can't recall if my hair loss continued while I was off my medication. (Actually, I can't recall much of anything during that time!) I only bring it up because in the last two weeks since starting a different brand of levothyroxine I am once again losing hair! I am going to wait and see if it continues over the next 6 weeks while I am increasing my T3 medication. Maybe that change will have an effect.

I did read in the link I mentioned above, that the author's "doctor believes that a TSH of around 1 - 2 is optimal for most people to feel well and avoid having hypothyroid or hyperthyroid symptoms such as hair loss. (Note that these levels are kept lower for thyroid cancer patients to prevent cancer recurrence.) This was anecdotal information, until recently, when experts determined that values above TSH of 3 are considered hypothyroid." --Mary Shomon

So to everyone out there getting their Thyroid tested....get your TSH number from the doctor (better yet, ask for a copy of your lab results). DO NOT just rely on being told you are in the normal range. Keep track of your TSH over the years so you have a baseline and trend to follow should you ever develop thyroid issues.

Remember: "A TSH greater than 3, an endocrinologist you must see"

Wait and See...

So I had my appointment yesterday with my new Endocrinologist. He went over my reports from my ultrasound, bloodwork, and RAIU as well as took my history. He was very empathetic and understood exactly what I had been through over the last few months as far as being hypothyroid and off my medications. He said he usually only schedules the RAIU during the late spring or summer to lessen symptoms and mitigate the possibility of myxedema. I told him it was really horrible and that I would prefer never doing that again!

He felt my gland and said that it seemed consistent with Hashimoto's "lumpy bumpy" feel. He also said the reports had nothing definitive listed. Meaning the nodules are too small to even biopsy, plus there was no predominant one as would be typical of cancer. He also stated that papillary carcinoma (the cancer my great Uncle had) is not typically hereditary. He suggested increasing my T3 (believe it or not!) a bit, to further suppress the gland and nodules and to help me feel better. He gave me orders for bloodwork in 6 weeks and a return appointment in 6 months.

So, somewhat anticlimatic, but pretty good news on two fronts; one, this is probably no big deal and just a part of my chronic illness, Hashimoto Thyroiditis...and two, I now have an endo that seems willing to work with me so that I feel good even though my bloodwork is in the normal ranges. Meaning he will adjust my meds to my symptoms and not just bloodwork.

I wouldn't be lying to say that I have a sense of relief. He did mention that this was most likely passed from my Mother's side of the family and he seemed surprised when I told him my Mom was not hypothyroid. He suggested she probably was and did not know it. So Mom, get retested! And to all my other relatives on Mom's side, get your thyroid levels checked! You may be able to feel better than you do right now!

Patience Part II - Day 23

It's day 23 of being back on my thyroid hormones for hypothyroidism. I have had inconsistencies from day to day as far as how well I feel, but in general my energy is coming back. I was able to walk the dogs a total of 4 miles this past weekend when we had wonderful weather. They were so happy to be outside!

Symptom-wise I did have lots of foot pain and muscle cramping while walking and I did feel more winded than in the past.

On Monday night I did a mile on the treadmill. Since then my right foot has been cramping intermittently and today I'm having a back spasm.

The other issue is that I finished the T4 levothyroxine that I had filled locally and began taking the T4 from the mail order pharmacy...lo and behold the levothyroxine manufacturers are different which is concerning because while the formulas are supposed to be the same, it has been reported that sometimes different manaufacturers use different binders that can affect the uptake of the hormone.

Last night I played with the dogs a bit in the living room, wrestling around and tossing the toys. I got winded and really fatigued in the arms and legs. I don't know if this is because I changed the T4 (Levothyroxine) meds 4 days ago or if I have been pushing it because I am feeling better.

Bowling league is tonight and that will either help my back or send it over the edge. Again, I don't plan to push myself but breaking 90 would make me happy!

New Specs...

I ordered new glasses today from Lenscrafters. Unfortunately my astigmatism is so bad now that the lenses are special order...so much for "glasses in about an hour". Since my issues with my thyroid medication being halted and restarted for the RAIU test, I've had to resort to wearing glasses and give up the contacts.

The thyroid hormone apparently has some sort of interaction with the tissues of the eye and eyelid. During my hormone hiatus, my eyelids swelled quite a bit, especially on my left eye. Additionally, both my eyes watered constantly and became photosensitive. It was impossible to wear contacts during this time.

I do hope to get back to wearing contacts again but rather than fight it, I'm embracing the change and getting some cool glasses.

I ordered two pair, one for "work" and one for "fun":

Patience...

I had to reschedule my Endocrinologist appointment due to icy weather, so now it will be a couple of weeks before I can get any answers to the thyroid nodule situation. I am back on my medications and feeling somewhat better although yesterday was a bad day. In my morning rush I missed a dose of T4 and had some swelling again by mid day...not sure why that happened so quickly. It is my first day off steroids, but those were tapered down and should not have cause a rebound effect. There was some stress which could have driven up demand for T4/T3 I suppose. Additionally, shoveling all that snow the prior day may have also driven up demand. I do know that my arms and legs feel extremely weak and my arm muscles are definitely painful from the minimal exertion. Even today I am feeling like my face and tongue are swelling again. My fingertips are tingly and painful and I have been having muscle cramps in my legs and back. On the plus side my eyelid swelling is down and my eyes are no longer tearing up every 30 seconds. The photosensitivity is down as well and my brain fog seems to have lifted.



I called the Endo's office to see if I could get my appointment moved up, but they do not have any openings at this time. They did say to keep checking back for possible cancellations, so I guess I will try to do that in hopes of getting in sooner.

Thyroid Awareness Month

Ironically...January is Thyroid Awareness Month so here's a PSA about it featuring model Kim Alexis, who was diagnosed hypothyroid several years ago.

http://www.youtube.com/watch?v=8uRK2yrFSyM

Mary Shomon (patient advocate) has a Thyroid Awareness Month Kickoff page on About.com. Check out the link for information on her Check Your Neck, Change Your Life Campaign.

http://thyroid.about.com/b/2009/01/15/thyroid-awareness-month-2009htm.htm

It's estimated that there are 60 million Americans suffering from thyroid disease, a majority of which are undiagnosed. Getting your thyroid checked is simple so ask your doctor about it. It could change your life!

UPDATE:
I just finished reading a copy of the Thyroid Awareness Edition of Power Of Prevention, The Magazine. You can find it here. I have to say it is an excellent source of concise information on thyroid disease and a must read for anyone dealing with the issue or anyone who just wants to better understand the impact that the thyroid gland has on the body.

Feeling Better...

This is my 4th day back on my thyroid hormones and I have to say I am starting to feel better. I still got weak and winded from vacuuming last night, but after a nap I was better. This morning I actually got through blow drying my hair without a break! And I cleaned up the kitchen before heading out to work. So my energy level must be improving.

I also got a flu shot on Tuesday and have had swelling and tenderness in that arm so I put on an ice pack....trouble is I had pain in the opposite shoulder from bowling (what was I thinking?) so I put a heating pad on that side. I felt like one of those McDonald's Mc D.L.T burgers, the "keep the hot side hot and the cold side cold" ones from the 80's. Does anyone else remember those? The burger came in a two compartment styrofoam container with a bun, lettuce, and tomato on one side and the burger and bun on the other. That just seems funny now!

Anyhow, a lot of my face swelling has gone down. I've had these strange tingly feelings in different parts of my face the last two days. I guess that is the fluid leaving the tissues, but it feels weird and makes me want to wrinkle up my fore head or do those face stretches. My doctor had offered me some low dose prednisone (Steroid) for the swelling I had as it was causing me some pain in my ears. I declined but then decided that I would take him up on it and called to ask him to phone it in to the pharmacy. I'm hoping that will hasten the recovery a bit and not turn me into Arnie "Vwe vwant to pump...You up!" Swarzeneggar. He swore it wouldn't.

I'm looking forward to the weekend, got a couple of "to-do lists" and it appears I may have the energy to get them done!

RAIU Results

The results of my thyroid scan were several nodules found to be hot and one found to be cold. "Hot" means it behaved like active thyroid tissue but took up more iodine than the surrounding tissues and is thus "overactive". Cold means it took up little or no iodine and is not behaving like thyroid tissue. The cold one has a 10% - 15% chance of being "a problem" which mean 85% to 90% chance it is nothing to worry about and just something to watch. I'm being referred to an endocrinologist and will see him on Tuesday. I'll know more after that visit.

Based on my research it is likely that they will opt to do a FNA (Fine Needle Aspiration) biopsy of at least the cold nodule if not the hot ones as well. For now I just feel better knowing a little more and also being back on my medications. The brain fog has lifted slightly, but the swelling and fatigue are still around. It's only been two days but I'm sure it will continue to improve.

I recently found out that there are at least two other people in my family on my Mom's side with thyroid issues and one of them had actual surgery to remove part of the gland due to a nodule. It eases my mind knowing that there is a source (genetic) for this problem and that I am not alone in dealing with it.

Visitor

I've been working from home the last two days because this hypothyroid thing is playing havoc with my energy level and my emotional state. You can't cry or nap at work and still be respected so I've opted to work from home. I have radioactive iodine uptake tests on Monday and Tuesday which will hopefully show that the nodule is nothing to worry about and then its back on the meds and back to normal, well normal for me. Not too soon either, I am offically back to my pre-high blood pressure weight. I know that a lot of it is just fluid retention from the hormone deficiency but I still feel really depressed that I was unable to keep the weight off. The holiday and being off my meds did not help and I knew it was going to be a challenge but I really didn't expect to see that number on the scale again.

My Grandma is on hospice at the nursing home now. We really have no idea how long she will be able to hang on. She's on morphine and isn't responsive. She was able to get out for Thanksgiving and Christmas and was able to socialize a bit although she would get confused and mix up her time periods even then. She ended up in the hospital last week for a few days and it's been downhill since.

My cousin, Lena, is flying out here this weekend and staying with us. It will be nice to visit with extended family but sad due to the reason. I'm trying to get things prepared in our spare room in between some work stuff. We're going out on Saturday night for my Uncle's birthday which is actually Sunday. Happy B-Day Uncle Ed, I'm buying the Pina Coladas!

Other than that, be sure to check out DH's blog: http://thephotogeek.blogspot.com as he's been posting some awesome stuff again after a summer hiatus.

I am the ALPHA and the OMEGA 3...

If I take any more fish oil I will either grow scales or have mercury poisioning. Neither is appealing.

Thyroid Holidays

I found this old post on http://www.bigdumptruck.com/thyroid/ and thought it was pretty funny and timely.

And what holiday season would be complete without listening to Christmas Carols? None! Thyroid disease sufferers, whether over- or underactive, love nothing more than hunkering down in an overstuffed comfy chair with that special blankie and some snacks, to listen to holiday music and watch holiday specials on television. I could just do that all day…and I have!

And the more thyroid-specific, the better, right? Here is a list of my favorite Thyroid Carols:

All I Want for Christmas is my 2 TSH
Silent Night Sweats
What Diet is This
Goiter to the World
Little Saint Neck
Little Gland of Bethlehem
Away in a Brain Fog
Oh Come All Ye Top Docs
Oh Holy Nodule
Oh Thyroid Gland
Have Yourself a Hypo Little Christmas
Little Endocrinologist Boy

Not available in any store!

Here's a few more funny thyroid stories:
http://thyroid.about.com/cs/personalpages/a/hypobarbie.htm
http://thyroid.about.com/library/weekly/aa121301a.htm

T4 on the down low...

Why oh why did my Doc decide to schedule a Thyroid Scan for January?! Now I am facing the Holidays without any supplemental thyroid hormones save for some T3 which I'm afraid to take too much of due to side effects....like sweating and tachycardia...ugh. I have been off the T4 for a week and half and I already feel like someone has beat me about the arms and legs with a rubber hose. Saturday was a total waste...I slept in until 9:30am, got up, drank coffee, fed the dogs, took them out, then took a NAP UNTIL 1pm. WHAT?! Then I was cranky and DH convinced me we needed to get out, so he drove me to dinner and to see Javi. We had a good time but I slept all the way home.

I know it is not Lacubrious at all to be complaining on a blog like this, but it's my blog and I can do what I want! Oh oh, here comes the irritability! Anyhow, I am feeling down but I only have 4 more weeks to go and then I can get back on track with my meds and hopefully the scan will show everything is normal. In the meantime, God help those who have to deal with me. I am using as much restraint as possible to avoid ripping you a new one if you annoy me the least little bit, but the process really exhausts me. Hopefully my Friday's off of work will help....a little anyway.