Graves' and Greatness

So, earlier on this year something new and interesting started happening to me.

And I don't JUST mean this blog - which I still love and think about.  All. The. Time.

I started shaking.  Not shivering every now-and-then, but shaking.  Just a little bit.  Mostly just my hands.  And my heart.  And within.

I was telling my dad about it one day, just matter-of-factly, of course - I didn't want to scare him.  And he recommended a blood test.

My dad, 'When was the last time you had a blood test, mi hijita?'

Me, 'Uhmmmm...not that long ago.  When I had the last baby.  About 11 years ago.  Oh.  Right.  Ok, ok...I'll go get a blood test.'

As it turns out, the doctor told me I have hyperthyroidism.

Bless you!

I had NO idea what he had just told me.  Something about the thyroid, blah, blah, blah.  Get this test, get that one, phone this specialist, don't worry it's not cancer, sign here.

Uhmmm...okaaaay.  Wait.

What?

Hyperthyroidism.  At the base of our neck, just above where your two horizontal clavicle bones meet is a butterfly-shaped organ called the thyroid.  It regulates just about every single cell, organ and tissue in your body.  Some of its main functions are to sort out your heart-rate, body temperature and metabolism.  Your pituitary gland produces a thyroid stimulating hormone (TSH) and activates the function of the thyroid.  In return, the TSH regulate the thyroid's production of two more hormones T4 and T3 - and THESE are the hormones that regulate your metabolism.

So, in my case, I have huge (more than 3 times the normal) T4 and T3 hormone levels.  And tiny (less than 3 times the normal) TSH.  

Now, you may be thinking by now, it's a problem with my thyroid.  That's what I thought.  But on further study, I found out I have a condition called Graves' Disease and THAT'S what caused my Hyperthyroidism.

This is important to understand because they thyroid is the victim in all of this.  Not the cause.

It would be like saying I have lung cancer, therefore I smoke.  Or I have a broken toe, therefore I kicked a ball.  Or I cracked a rib, therefore I played rugby.  Does that make any sense?

The Hyperthyroidism is one of the most recognisable of the many, many symptoms of Graves' Disease.


Interestingly, one in about 20 Australians will develop a thyroid condition at sometime of their life. 

A SHORT EXPLANATION OF GRAVES' DISEASE

Graves' Disease itself is an autoimmune disease.

Your IMMUNE system helps to fight-off foreign bacteria (like coughs, colds, flu, etc.)  that enter your body through outward sources.

An AUTOIMMUNE Disease is when your own body (your cells, tissue, etc) mistakes some of your own body's cells, tissues, organs, etc as a foreign substance and attacks it. Examples of Autoimmune Diseases include Type1 Diabetes, Coeliac Disease, Lupus, Addison's Disease, Hashimoto's Disease, rheumatoid arthritis etc.

The reason why I think this is important is because I think it would be wise to treat the autoimmune disease and not just the symptoms.  Which is what doctors have been doing with me for a few years, now.  I would go and see a doctor time and time again for the pain in my knees, for example.  I would jump through all their ridiculous rings just to be told that I need to realise that I'm getting older.

Which I have no problem with, by the way.  In fact, it's one of the reasons I'm in this mess - I thought I was just getting older.  Menopausal, in fact.  I don't care about how old I am (and I don't really care how old you are, either, by the way) so the thought of Menopause at 42 wasn't really a big deal for me.  I just wanted to be armed with as much knowledge as possible about what may happen.  

So, I would take myself to our local Medical Centre - where there's no point in having just one favourite doctor because they rotate the doctors around faster than you can say hypochondria - and have a few visits with a regular doctor where I would jump his ridiculous rings and he would misdiagnose over and over again.

I was wrongly diagnosed for years. 

SYMPTOMS

Here's a list of some of the possible symptoms:

• Trouble sleeping (I have trouble falling asleep, staying asleep and getting back to sleep)
• Irritability or nervousness (I've always been a nail biter, but it got worse.  I would be jittery all day, overreact to insignificant things, dwell on negative issues to the point of obsession, loose my concentration quickly and my memory became embarrassingly worse.  I couldn't walk in a straight line because my body would convulse wierdly.  My sister once told me it looked like I had been drinking too much.  I told her that the problem was that I hadn't been drinking enough...jijiji.)
• Heat sensitivity, increased sweating (not that we had a brilliant summer, but I would begin to shiver with cold during the middle of the day, pile on the blankets and then shake them off like they were oppressive heat-weights)
• Increased thirst
• Hand tremors and outward tremors (the hand tremors were dreadful.  As one who enjoys calligraphy and writing, this was terrible.  My son once told me that the letter I had written for him to stay home would be mistaken for a forgery.  It looked like a 3rd grader had written it...hehehe.)
• Rapid heartbeat and inward tremors (palpitations, all of a sudden.  I couldn't watch a scary movie because the sudden onset of heart thumping - big and fast - was more frightening.  Inwardly I felt like all my organs were constantly fluttering.  My voice began to shake as well.)
• Thinning of skin or fine, brittle hair
• Hair loss (Before being diagnosed, I was combing my hair in the bathroom, once, and my son walked in to brush his teeth.  He noticed the rather sizeable wad of hair on the vanity and asked me about it, 'Oh, that's just what happens when you get older - your hair falls out,' I said.  Then I thought about it a bit more and it really was an awful lot of hair.  I now know what the reason behind it was.  I've since then cut most of my hair off and now sport a short bob.)
• Frequent bowel movements
• Joint pain (The knee pain had been going on for several years and there wasn't really any injury I could pinpoint it to.  Later on, when the trembling started, my hips became very sore - which added to the drunken walk farse.  Then my shoulders ached like crazy - still do, actually - and my arms feel weighted down.  I couldn't drive our cute little manual that we had just bought because changing the gears was torturous.)
• Weight loss without dieting (Well, as my sister said, there has to be SOME benefit to all of this.)
• Fatigue or muscle weakness (One of the reasons I had to stop blogging.  Most mornings I would get out of bed, go to the bathroom and lie back down on the couch.  Just couldn't do any more.  Add to that that I wasn't sleeping very well at nights, the exhaustion was ever-present.  I lost my cooking and baking mojo and simple tasks - like picking my son up from school - became struggles.  I would revolve my day on succeeding on two things, ie:  cooking dinner and picking up Cris, or doing the laundry and unpacking the dishwasher.  My constant exhaustion and trembling left me unable to drive anywhere more than a couple of kilometres.)
• Lighter menstrual flow and less frequent periods (One of the reasons I thought I was pre-Menopausal)
• Depression (more about that later)
• Goiter (another word for an enlarged thyroid, or small, benign growths around the thyroid organ)

GRAVES' OPTHALMOPATHY or THYROID EYE DISEASE (TED)

One of the many side-effects of this disease, is a condition called Graves' Opthalmopathy or Thyroid Eye Disease.  This condition affects the eyes, but I have no idea why.

From what I can feel, I'm afraid I may have TED, but I'll look into that a little later (hehehe...see what I did there?)

CAUSES

There are several ways to contract this autoimmune disease, including:

• Too much iodine.  Iodine is vital for the thyroid gland to produce thyroid hormone.  Considering that Australia is, generally, iodine deficient, I do not think my condition came about from consuming too much iodine.  
  
  
  It's so difficult to say how much iodine is in food as that depends on where you live and where your food comes from.   In the USA, for example, the population tends to eat highly-processed foods which leads to a surplus of iodine in their diets (and, consequently, are more hypERthyroid).  Here in Australia, we don't tend to consume as many highly-processed foods and are, therefore, more prone to iodine deficiency (and, consequently, are more hypOthyroid).  I know the richest source of iodine is kelp and if you suffer from Hypothyroidism (and Hashimoto's Disease - the polar opposite of Graves') I've read that it may help to supplement your diet with kelp or krill oil, etc.  
  
  
  I'd love to know what my levels are, but - as yet - I have had no luck obtaining this information from my Endocrinologist (more about that later).
• Stress.  From what I've read, this disease presents itself during periods of great emotional stress in one's life, ie: divorce, death in the family, etc.  However, I think I lead a fairly chilled sort of life and, again, do not think this was a trigger for me. 
• Genetics.  That potluck of destinies is responsible for so much.  As it turns out, I'm pretty sure my mum has an autoimmune disease and I think this is what I may have inherited.  Personally, I would much rather have preferred a lump-sum payment in my bank account, but there you have it.

MY GLUTEN AND DAIRY FREE (GFDF) DIET

So, as mentioned earlier, I've been visiting doctors for a while now - with very little to no luck.  If I hadn't requested the blood test (thanks again, dad, for that priceless piece of advice! xxoo) I may never have found out what I've got.  

After waiting for weeks to see the Endocrinologist, she finally started me on a course of low dose anti-thyroid medication.  Two days later, I had a thyroid storm - a nasty and frightening experience if ever I've had one - which sent me to the hospital.  A thyroid storm is like feeling all the effects of a heart-attack -  my chest ached, the shaking worsened, my breathing labored, the pins-and-needles tingling all the way up and down my arms, the numbness of my fingers, temperature and sweating, my heart pounding enough for three people, hallucinating, disillusioned, couldn't focus, confused and frightened.  And that's that I was pretty calm during all of it.  Mostly because I couldn't understand what was happening and I needed to trust that my husband and the hospital staff would think for me at that point.

I had been to see my Endo a couple of times for more tests, etc etc and, at first, she seemed so eager to begin treatment.  However, by the second visit, I had read a lot more about this condition and, naturally, had a lot more questions - particularly about the autoimmune disease.  

I am still convinced that, as the hyperthyroidism is one of the many symptoms of Graves' Disease, we should be treating the autoimmune disease primarily.  

I had read often about the effects of gluten and dairy products on the immune system and on autoimmunity.  People - parents and patients - keep talking about the benefits of maintaining a gluten and dairy free diet when treating any of the many autoimmune diseases and allergies.

My Endo wouldn't hear of it.  In fact, she quite dismissed it.  This shouldn't have been such a surprise to me - it's not like the medical establishment has been very open-minded about complimentary therapies.


So, I'm going to try this for as long as I can.  Fingers crossed.

I've since learnt that I need to be a tougher patient and when I don't feel the love from my medical professionals, demand it.

TREATMENT

As far as I've read, I can think of only three treatments for this condition.


Three!


And, apparently, there is no cure for Graves'.  Or so I've been told.


1.  Anti-thyroid medication - daily medication that may gradually reduce the activity of the thyroid tissue and level-out the thyroid hormones.  If this is unsuccessful, after years of medication you may be offered RAI.
2.  Radioactive Iodine (RAI) - A one-off pill that damages the thyroid in the hope that it will balance-out the thyroid hormones.  Sometimes it works, sometimes it doesn't.  If unsuccessful, you may then be offered the next treatment.
3. Thyroid Ablation - A surgery to partially or completely remove the thyroid organ, rendering the patient with lifelong hypothyroidism.


Please remember that these treatments only-ever offer to treat the symptoms of an overactive thyroid and do not treat the autoimmune disease, itself.


And, as an added bonus, they may or may not lessen or increase the risk of Thyroid Eye Disease (TED).


Also, I find it interesting that in 60 years there have been no new medical breakthroughs in the treatment.


So.  Anyway.


I've started on the low dose anti-thyroid medication Neo Mercazole (Carbimazole, 5mg) and I take it religiously twice a day.  I started taking a beta-blocker for the heart palpitations, but they have currently relaxed (thank God!).  I'm starting to feel much better and the strength is returning to my limbs.  My memory is much better and I can walk a lot faster for longer.  I'm sleeping fairly regularly now and am much less tired than what I have been these past three months.  Generally, I feel much better.

Now, while my Endo doesn't recommend it, I'm also on a gluten and dairy free diet and hope to stay on it for as long as I can.  I'm still convinced that our diet affects our health and I hope being GFDF will complement the thyroid medication.  I highlight the word 'compliment' because I think both synthetic and natural therapies may be able to assist each other.  It's not a competition.

My Endo also recommended a low-iodine diet and I am trying that, as well.  

GREATNESS

So, that's it for the Graves', now for some Greatness.

From late January onward, I have been physically struggling to live each day with some sort of normality.  But I most certainly didn't do it alone.  While my husband thinks I've had no quality of life for the best part of four months, I think I've been blessed abundantly with outstanding family, friends and colleagues.

One of the worst symptoms or effects of this condition is depression.  My mum suffers from depression and she's succeeded in alienating most of her family and friends.  I did not want to become like that.

While I would become emotional every now-and-then, I councilled myself into remembering that I am not the centre of anybody's universe, that there are a vast majority of people who are far worse than my good self and that my children needed to see me as someone who will fall down but, more importantly, will pick herself up again.

I didn't do this alone.  My kids were amazing.  Being the very observant people that they are, they noticed how much more they needed to do, how little they needed to expect and how much more selflessly they'll have to give. 

And they never failed.

My husband - whose patience wavers every now and then - stepped up to the plate and took that whole 'In sickness and in health' vow seriously.  I haven't spoken to him often about this and, frankly, I don't want to, either - I like knowing that he can experience this with me but that we don't always have to talk about it, we don't have to over analyse it, we don't have to complicate it with what-ifs.  After a while, talking about myself and this condition is JUST SO BORING!  

Congratulations on staying with me this far, dear Reader :)

My family, friends and neighbours were incredible; patient, gentle and they made a many-a- fine casserole when my little family needed it most.


My work colleagues.  Actually, they are more like my friends than they realise.  I'm fortunate-enough to work in a job where I LOVE the job, LOVE the people and LOVE the location.  I'm a Pastoral Assistant for our local Catholic Church and there were many-a-time when I just couldn't take another step.  These wonderful people would clearly see that I was struggling and just step in to help out.  Nothing needed to be said.

And my faith.  I have no idea what the real reason is as to why I have this thing, but I have it and that's that.

(See how brave I'm pretending to be?  I know you can see right through me, but for now this is the best I can do.)

My faith is absolutely essential in my treatment.  Faith in my family, in my friends, in my community, in myself and in my God.

THAT'S GREATNESS.

I'm learning how to allow myself to trust people, to know when to just stop! and when to ask for help. It's given me an opportunity to view different aspects of my life with new eyes and, while  I'm not trying to say I have the insight of a Zen master, I've been able to focus inwardly and reflect on my priorities. 

 It's a work-in-progress.