Breastfeeding

Some interesting info:

-thyroid problems can affect milk supply. This makes tons of sense as I never had a problem with supply (maybe just for one week in July-ish) because Koen was such a frequent eater. He is the one that kept my supply up. I always thought he ate more frequently (every 2.5 hours for 6 months in the day time and then moving to every 3 hours after 6 months of age and he's still at every 3 hours) because of his reflux but maybe it was because of low TRH, low TSH and therefore low prolactin.

-I'm on PTU, the safest antithryoid to take while breastfeeding HOWEVER, `A July, 2000 study in the journal Pediatrics, however, found that more than one-third of pediatricians and endocrinologists still advise against breastfeeding for those mothers taking PTU, despite some current journal research claiming it is safe.' Apparently it is essential that Koen be monitored every 3 months for his thyroid function but neither my doctor nor endocrinologist has suggested it. I am slowly weaning him right now though so hopefully all is well. I am on a moderate dose so ya, I would be so upset if I had somehow harmed him. However, formula was not an option as he was unable to keep it in his belly, so I had no choice. They suggest taking a small dose after each feeding for minimal transmission to baby.

Risk Factors

So, according to `Living Well With Graves' Disease and Hyperthyroidism' these are the risk factors for Graves Disease. I will put a yes in brackets to those that apply to me, as far as I know.

1. Female (YES)

2. If you have other autoimmune or endocrine disorders (ex. lupus, diabetes)

3. 20-40 years old (YES)

4. family history (if female and have a close female relative with it, you have a 30-50% chance to carry the antibodies...doesn't mean you will get it, but you could)

5. pregnancy (YES...I was 8 months post partum when I recognized changes)

6. smoking (I smoked in the past so I'm not sure if that affected it)

7. nuclear exposure

8. seasonal allergies (YES...so interesting!)

9. gluten intolerance

10. on iodine drugs

11. getting drug treatments

12. heavy metals (ex. mercury)

13. aspartame

14. stress (increases Graves' EIGHTFOLD) (YES, YES, YES)

15. depression, anxiety, panic attacks (YES.....had some 2 years ago)

16. left handed, ambidextrous, premature grey hair

Eye Relief

Last night was one of the roughest nights I've had with GD. My eyes were so inflamed the pain was unbelievable. I can't take certain pain relievers because it can interact with what I'm already taking. I had extreme nausea and I'm not sure if it was due to the pain or due to the fact that I took a Ca/Mg pill and later read that it can interact with my beta blockers. Crap. I'm just going to stick with what I've been doing and add various other supplements etc. after talking to my endo.

It reminded me of being in labour with Kai. I was flashing back to that kind of discomfort.

This morning I got some lubricant eye drops with white petrolatum and mineral oil. Tears Naturale II for day and DuoLube for night. My eyes feel so slippery and lubricated...I didn't realize how bad they were. As for the pain behind my eyes, the inflammation, it usually starts getting bad around 3pm...we will see.

So thankful that it is winter time and overcast. I just went for a walk without sunglasses:) So thankful that we have NOTHING on our agenda this weekend for the first time in probably a year and that Gary is home all weekend. Phew.

I can see that I could very easily get depressed over all of this. I keep going with the hope that remission is there and I will reach it and in one year I will be normal for some time. That's my desire, hope and prayer.

This disease, left untreated, can be deadly. I need to watch out for thyroid storms which can be brought on by stress or infection. So, if you see me madly sanitizing my hands, that is why. I can't get sick.

For some reason my goiter has doubled in size in just one week.

Okay, on with the day....

Good Read

Just need to say I am madly reading `Living Well with Graves' Disease and Hyperthyroidism' and I can't put it down. So much information that is going to help me so much!!

I cannot wait until Gary gets home so I can go out and buy all that I need (Cu, Mg, Ca....). Why don't doctors tell you these things?!

I will have some good summaries later. Why didn't I get this book weeks ago?!

Thyroid Health Clinic

Last night my sister and I went to a `Thyroid Health' clinic put on by a naturopath. A few things I learned:

-just from being in the room with bright fluorescent lights, I had to wear sunglasses inside. So embarrassing. Fortunately people there probably understood. Another reason why working would be difficult.

-my thyroid hormones and meds are passed on to Koen through the breastmilk. I knew the PTU was and that is it the `safest' one to take while breastfeeding. I wish I knew more on what the high levels of T3 and T4 did for Koen and how much of an increase he got. Info out there is so confusing. I hope I did nothing to hurt him in any sense. I said I was starting to wean him and she mentioned how that will mess me up too....I need more info!!! I am trying to give him one whole milk bottle per day and wean very, very slowly. I really wonder if I had it during my pregnancy with Koen (my heart rate was quite high compared to my first), if so, there were def. risks there but he seems to be okay. Maybe I will get the doctor to check out his heart today and ask for a blood test for him? I need more information!

-during my period, I feel like I become hypo and she said it was likely due to the estrogen. So yes, that is why I am so tired, cold, and have brittle nails during that week each month.

-I need to eat goitrogens; soy, turnips/kale/broccoli, cabbage, peanuts, pine nuts, millet, sweet potatoes...

-she recommended bugleweed but that needs to be closely monitored by a naturopath

-I asked about eliminating dairy and wheat and she said no. Hmmmmmmmmmmmmmmm. She just said a healthy diet was most important.

-when she asked for some hyper symptoms (she already had a list of some), I couldn't come up with anything. How could I not come up with the symptoms I've been struggling with for 3 months?! My mind is so slow and forgetful.

Off to the doctor this morning....

Choices

I feel like Graves has made some decisions for me and I don't like it. I don't like anyone or anything telling me what to do. I cannot go back to work right now. There is no way, unless I want to feel like I'm dying of a heart attack/anxiety attack every second of every day. If I was 100%, I would totally go back. I love my kids and I love the school I work at. Having both makes you appreciate the other more.

I feel like the choice to try for a 3rd biological child was taken from me. I mean, I'm in the midst of the chaos and worst of it now, so maybe my thinking is skewed, but this is how I feel. Taking my meds while pregnant can cause birth defects. Not taking my meds could lead to miscarriages. Having another child could take me right back to the beginning of this crappy journey all over again. Having another child would mean seeing specialists throughout the pregnancy. And then, I think of adopting. What if we can't adopt because I can't get into remission. What if I can't get `normal'. I am so happy with my 2 boys and Gary BUT I would like to make the choice out of health and not because I can't do it. Does that even make sense?

I've been having major chest pains for about a 6 days now (I really can't keep track of anything). It started out at about 1 hour per day. I would say it was about 6 hours straight yesterday. I'm waiting for another symptom before I do something about it. The pain did migrate to my left shoulder but then went back to my heart. It has gone down to my legs a bit and then went back to my heart. I'm 99% sure it's the coronary arteries spasming but seriously, for so long? To feel like you are going to have a heart attack in 5 minutes, all day long, is not fun. I am able to act normal so you would have no idea. Gary knows. Poor guy, I hope he doesn't get sick of hearing all about it for....forever. Last night I prayed that I would wake up in the morning. I feel the need to write letters to my kids in case something happens. I keep Gary very updated on my symptoms in case something happens, he can tell `them' where I'm at. This is ridiculous. This is not what life is supposed to be like.

I went to the employment office today to see about the possibility of a short term disability coverage. I said that I am able to work (photography...or I have the ability to do some desk work or something) but not teach, which is my job. I am not eligible because I am able to work. That's fine. Whatever. Sucks. I'm nervous about living on one income. We have never done it. Good thing I'm so thrifty/cheap...whatever you want to call it.

Every morning I wake up and open my eyes and say a quick little `God, please don't let my eyes bulge out' and I touch my eyelids and make sure they feel okay before I take a look. So far, they look okay. Often red and very tired, but I can still see and they still look normal. I guess I should see an opthamologist?

Well, I'm looking forward to Wednesday (naturopath) and Thursday (doctor). I've ordered my book, `Graves Disease; A practical guide' and look forward to reading it. Even though I'm a biology major, I know the bare minimum on the thyroid and there is still a TON of info to learn.

Finally, I am so incredibly thankful that I was diagnosed in just 1 week with hyperthyroidism and 2.5 months for Graves. Seriously, people often struggle with it for YEARS before being diagnosed. People often have other diagnoses first like brain tumours etc. So thankful I know what I'm dealing with......

Eyes

One thing that I haven't given much thought to, until today, are my eyes. Sure, they have hurt since day one. Pressure behind my eyes, tenderness around it. I was under the impression that because I haven't developed any more serious symptoms with my eyes that it wouldn't get any worse. This is not the case...it can get worse.

Hormone imbalance can cause swelling behind the eyes, pushing the eyeball further out. In severe cases, it can compress the optic nerve, causing blindness.

Other symptoms include:

dry, irritated eyes
puffy eyelids
double vision (SOME)
light sensitivity (YES)
pressure or pain in the eyes (YES)
trouble moving the eyes

Taken from: http://endocrine.niddk.nih.gov/pubs/graves/
`About 25 percent of people with Graves’ disease develop GO (Graves' ophthalmopathy) which is usually of mild to moderate severity. This eye disorder usually lasts 1 to 2 years and often improves on its own. GO can occur before, at the same time as, or after other symptoms of hyperthyroidism develop and may even occur in people whose thyroid function is normal. GO is severe in 3 to 5 percent of people who have the disorder, and smoking makes GO worse.'

Here is a link to a video of Graves Disease on `The Dr's'. http://www.thedoctorstv.com/main/procedure_list/814

Thankfully I only have a mild severity so far. Thankfully I do not smoke. Thankfully only 3-5% have severe effects. My prayer for today is that my eyes do not get worse and that instead, they will improve.

Running

Okay, for those of you that don't know, being active is an important part of my life. I love feeling fit and energetic. Okay, who doesn't? So, I searched for `running and Graves' and came up with some great inspirational stories.

For instance, Gail Devers was a gold medal olympian who lost about 35lbs, her hair was falling out etc and was undiagnosed for almost 2 years. They were even going to amputate her legs at one point. In 1990, they discovered she had Graves Disease and she had radioactive iodine treatment and then thyroid hormone replacement therapy. She went on to win a silver medal in the 1991 World Championships! THAT IS ONE YEAR AFTER TREATMENT!

Did you know that President George Bush Sr AND his wife also had Graves Disease?

Goals

Tonight I went to Costco to buy a bunch of vitamins and random other things that I think I should be taking (according to my initial research). I will be seeing a naturopath next week but wanted to get started on something. I got multivitamins, B-complexes, and a multi-strain probiotic (I know the best acidophilus should be in liquid form but I have no energy to go searching for it right now). Two things upset me there:

1. There were chocolate samples there. They rarely have chocolate samples. I took it, felt guilty, and ate it. I know I shouldn't but it can't make that much of a difference. Right?! How far do I go into a strict diet? What should this diet look like? I'm hoping to get this figured out in the next week.

2. I hate spending money on stuff that isn't fun. Like pills. I don't choose this illness and yet I have to pay for my daily meds and whatever supplements and natural health providers I choose to see. Thank goodness my daily meds (beta blockers and PTU) are covered, I just have to pay the <$10 dispensing fee for my $100 of meds:)

It's starting to sink in that this is for life. I don't know if I should be hopeful and think I'll be `normal Louise' in a year or so. I don't know what goals to shoot for because I like being realistic so that I'm not disappointed if I don't reach my goal. Maybe I need to find a book about it. Maybe I need to talk to the specialist again. I don't know.

Phone Conversation With A Fellow Graves-er.

Today I spoke with a woman who has had Graves for 5 years. We have somewhat similar personalities and outlook on life so it was really good to talk to her. She is actually a woman on an opposing team in flag football so that's kind of cool! I've played flag football for about, oh, 4 years. She was also once a runner but that is one thing that she has not been able to. She is also a teacher and had to take time off when she was first sick, and then returned to a VP role instead. Here are some major things that I got from our conversation (I forget tons but here's what sticks with me):

*No one understands Graves, they just think you have a fast metabolism. Wrong.
*Many people make the comment, `Oh, I wish I had that!' or `I wish I had it for a week!'. Dudes, you don't want it. The weight comes back. The weight is the least of your worries. Her weight also fluctuates by about 7 lbs. My dental hygienist made that comment yesterday...`Oh, I wish I had a touch of it!'. GRRRRRR.
*She lost her dad (I lost my mom) before getting Graves
*We have the same endocrinologist even though we live in totally different cities and we both love our endocrinologist!
*She said that one of the greatest aids to her is her diet. She is on a wheat and dairy free diet. Eliminated caffeine, alcohol, and refined sugar. Many supplements too which I will be figuring out in the next week. I def. need some probiotics for all the lovely woman problems I've got from this and some vit B complexes etc. Need to see a naturopath.
*She said that she really has to watch out for stress in her life or the symptoms come back fast...same here. She has asthma which results in asthma attacks when stressed, I `just' get anxiety attacks.
*PEOPLE DO NOT UNDERSTAND/BELIEVE THAT YOU ARE SICK BECAUSE YOU CAN FUNCTION ALMOST 100% NORMALLLY
*She has to write everything down now as she is so forgetful. I am too. Lists with timelines and calendars are packed. I am very `slow'.
*She says she believes I will be able to bike and hike again. Maybe not running though. Okay. I feel this deep desire to hike with my family. Imagine not being able to do something that is, and always has been, such a big part of your life. Ya.

I have to tell you, I'm nervous about changing my diet FOR LIFE. I know I can't have alcohol or caffeine and that's okay. Dairy, I've done before, I will do it again. There are many soy products out there...just pricier which drives me bonkers. Sugar, I can do it. I know it won't kill me to have a cookie once in a while and I will let myself. Wheat, oh man, I don't know. It's hard because it's not just me, it's my family.

There is another huge issue out there, and that is pregnancy. You can get pregnant with it but I could not be on the medication I am on with it. You would need to see a specialist throughout. Symptoms could be aggravated and it could return with a vengeance afterwards. This is all what I understand right now. Gary and I have been talking about this a lot (even before we found out I had Graves). We have always wanted to adopt (with varying levels of thinking about it) and now, we have the `push' we need:)

Okay, that's where I am today.

The First Two Months

I just want to summarize the first two months of my hyperthyroidism.

It all started one evening when I felt like I was starting to get the flu. Every muscle in my body ached. From my feet to my eye sockets, every muscle felt sore. Over the next few days, I noticed that my heart rate was quite high (over 120 bpm while resting) and I felt short of breath. My hands were trembling. I was losing 1lb per day and eating 6 full meals. Something was wrong. I went to emergency but after waiting for 2 hours, I went home.

Gary, my husband, said that it sounded like I had hyperthyroidism as he recognized the symptoms because a friend of his had it back in university. I went to the doctor, had several blood tests (okay, maybe like 7 vials!) and finally, our suspicions were confirmed. I was put on beta blockers immediately but the symptoms were still quiet strong.

I was struggling with insomnia, being tired but having a lot of energy, anxiety type feelings, and the inability to even walk up the stairs. After several more weeks, I was given PTU (propylthyraci) which has stabilized me. I was/am on 3X50mg of PTU and 3X20mg of beta blockers (propranalol).

The initial thought was that I had post partum thyroiditis as I had my second son just 8 months before. However, in the last week, the results from my antibody test came back and I have Grave's Disease.

My body has stabilized. My weight fluctuates greatly (maybe up and down 7lbs a week), my trembling is in check, my sleep is okay. However, stress affects me greatly. Any kind of perceived stress makes me feel extremely anxious and all of my symptoms return very quickly. I have decided not to return to work (teaching) which will be `interesting' for our family financially.

Other symptoms that I had/have were; sweating (feeling warm), irritability, change in menstruation, hair loss, muscle weakness, tachycardia, poor memory and a general slow down mentally.

I am unable to do more than walk at this point. I am weak. I tried running for 5 minutes and my heart rate went up to 200bpm.

So, this is where I am, 2.5 months after recognizing that I had a problem. It is unknown what causes it but it can be triggered by emotional stress. My mom had passed away 3.5 years ago and my dad had been re diagnosed with bladder cancer and was getting remarried. I had two boys born via C-section. I guess that could've all contributed to the stress?

The plan is to be on my medication for 1.5 years and hope that I go into a long term remission. Who ever though that your thyroid was so important? Wow. So, that's kind of where I was and am at this point.

I plan on altering my diet completely to help control my symptoms. More on this to come.