Sunday, November 25, 2012

1. Thyroid Series - Symptoms

So - for the first thyroid post in the series I thought I'd focus on symptoms.

This link http://www.stopthethyroidmadness.com/long-and-pathetic/ is to a very comprehensive list, which is helpful-ish, but I think the top 5 are:
  1. Struggling with exercise, higher heart rate than normal or higher than others, "spiking" heart rate ie your heart rate used to be 160 for your regular run or cycle and now its spiking to 190 for no reason and you've got a lot of lactic, and post exercise fatigue.
  2. Cold hands and feet and being more sensitive to the cold than others, including sudden body temperature drops, often gets worse at night.
  3. Needing naps in the afternoon and waking up tired, or struggling to wake up.
  4. Unusual or unexplained weight gain - 1 stone/14lbs plus.
  5. Constant sore throats and colds.
  6. Brain fog/cognitive impairment/struggling to concentrate or do normal tasks.
  7. Feeling you can't cope/basic lack of will to get things done, stuff you know needs doing and didn't used to be a chore is now too much. 
  8. Pale, think/lumpy, itchy skin.
  9. Hair loss/eybrows thinning.
  10. Chemical, black hole of hell, depression - not the usual high anxiety state depression most bright people live with.

My experience of the last two were terrifying. To put the brain fog in context, I pulled honors grades at Stanford Law with brain fog and what my idiot endocrinologist at the time called "a little lobotomy" (doubling my thryoid dose because they'd screwed up for the whole term) so quite possibly only you or someone you haven't seen in a while will spot it. But it's awful - I remember vividly being sat in a colleague's office, talking about issues of the current deal and just not being able to wrap my brain around them - when I knew a year ago it would have come easily - the brain just wouldn't go, it was like pushing treacle. Drafting took forever. My brain had just slowed down.

The depression was my last symptom and out of hell. I'd done 3 years of CBT/Jungian therapy sorting the usual stuff out so when the depression hit, shortly after my father died and we were in various family litigations, I went back to my clinic. Who were border-line criminally negligent - no one picked up on the thing I couldn't understand - how had I now become clearly chemically depressed when I'd never been before (most American shrinks would order a thyroid test to be fair) - pushed anti-depressants at me (which I refused to take because I think the efficacy rate is appaling but would have put me in a coma, because they block uptake of T3) and tried to force me to become an in-patient (wouldn't have helped but would have destroyed what was left of my life) - and it was in fighting them and dealing with the litigation that I figured out what was wrong with me to survive - I thankfully come with a "fvck you" gene that fights on general principles, especially pushed into a corner. This was, sat-at-the-end-of-the-bed-having-no-idea-how-to-stand tired, and thinking about stepping in front of the subway/tube each day because it would be easier than going through with my day. I had responsibilities and that's what kept me going in the worst - but this happens when your brain, short of T3 and producing a lot of TSH, stops producing serotonin and endorphins. Get mis-diagnosed with Hashimotos at this point and you might not see the light of day.

Glossary for the Thyroid series

Blood Tests - The only blood tests, from a thyroid point of view, that you should be focussing on are Free T3 (FT3), Reverse T3 (RT3) and the Thyroid-antibodies: anti-TPO and TgAb  - a full list of recommended blood tests can be found here http://www.stopthethyroidmadness.com/recommended-labwork/  Furthermore, the thing to remember about thyroid blood tests is that thyroid operates primarily in the muscles and tissue, not the blood stream - and there's no conclusive way to check what's going on where thyroid operates other than symptoms.

Low Dose Naltrexone - http://restormedicine.com/low-dose-naltrexone-san-diego/ The best immune modulating agent out there for things like Hashimotos and Fybromyalgia - unfortunately the research is at an early stage but annecdotally a lot of Hashimotos patients and Fybromyalgia patients are seeing benefits see - http://snapl.stanford.edu/research/ldn.html

RT3 - Reverse triiodothyronine http://en.wikipedia.org/wiki/Reverse_triiodothyronine - your body, if it feels under threat in some way, can produce this hormone which locks on to the cell site in your body for T3 and instead of turning the cell on, turns it off. Unfortunately mitochondria do not come with flicky switches and once turned off, may not turn on, thus the problem can cascade.

T1 and T2 -  monoiodothyronine (T1) http://en.wikipedia.org/wiki/3'-Monoiodothyronine and diiodothyronine (T2) http://en.wikipedia.org/wiki/3,3'-Diiodothyronine are the most unstable of the thyroid hormones.  The nomenclature basically refers to the number of iodine molecules attached - 1-4.  Not a great deal is known about what either do, although both pass the blood-brain barrier and have functions in the brain.  T2 in particular has a role in regulating cellular energy production.  The only way to be supplemented with them is to take decicated pig thyroid, such as Armor, but T3 should break down into enough of T1 and T2 so long as you have a plentiful supply.

T3 - triiodothyronine http://en.wikipedia.org/wiki/Triiodothyronine is the primary active form of thyroid and is critical that you are primarily supplemented with T3 if you need supplementation. T3 is the master hormone - "it affects almost every physiological process in the body, including growth and development, metabolism, body temperature, and heart rate." Most critical is its role in replication and gene expression. If you don't have enough of this, however high your T4 level, you will feel awful.  The problem with T3 is that it has a half life in the body of about 6 hours so you need to take it in a slow release form, or staged through the day (latter not being ideal).

T4 - Thyroxine http://en.wikipedia.org/wiki/Thyroxine - is the storage form of thryoid hormone.  Your organs can store it and convert it into T3.  A normal thyroid produces roughly 80% T4 and about 20% T3, but the TSH biofeedback loop can change that ratio, and also drive conversion of T4 into T3, but once you lose your thryoid that feedback loop gets broken. 

TSH - a brain chemical which responds to the level of T4 in the blood.  The blood test is really not very useful other than as a rough guide in diagnosis. http://www.stopthethyroidmadness.com/tsh-why-its-useless/

Introduction to the Thyroid Series!

In my struggle to recover from Hashimotos, I've lent my previous nutrition knowledge to the hunt to get better, along with researching vast amounts around the subject.  I thought I'd do a series of posts focusing on what I know about Type 1 and Type 2 Hypothyroidism.  But as a starting point, below is an introduction and a list of great reference material.

So, I have what is known as spontaneous onset Hashimoto's Thyroditis, colloquially known as Type 1 Hypothyroidism.  Historically Hashimotos has been a hereditary thing, but I join a growing number of professional women who, following a serious work crunch involving the odd collection of a sore throat and a lot of stress and sleep deprivation, end up with a particularly virulent form of Hashimotos with a very high antibody count.  The upshot is that you lose your thyroid and you are (a) on replacement thyroid for the rest of your life (b) unlike Type 1 Diabetes, you will be subject to that autoimmune attack for the rest of your life because you've got the thyroid in your system and (c) the deeper you got into thyroid failure before diagnosis, the longer your haul out for a variety of reasons. Very unfunny, and hell yes, I wish I'd known about it 6-10 years ago, for starters I've been able to figure out exactly which month of work-hell kicked it off, and if I'd known I would have stayed home until I'd got rid of the laryngitis and let the other associate clean up his own mess, hence in part my proselytising about the disease. 

Type 2 Hypothyroidism can be caused by a whole range of factors, either resulting in your body producing low levels of thyroid hormone, or your body producing too much Reverse T3 and blocking the T3 you have in your body.  This is considerably more common than Type 1, and while you don't lose your thyroid, it can be equally devastating.

This is a women's issue. Both Type 1 and Type 2 Hypothyroidism occur in men, but the ratio of occurence in women to men is 20:1. 

Another reason why I'm evangelical about this is that (a) although Type 1 hit me very hard, bad, sloppy and incorrect treatment has hit me harder (b) I've watched two women "wake up" this year from Type 2 Hypothyroidism on T3 therapy (more on that another post). The thing all three of us share is that no one spotted that we were sick, our primary cares/GPs told us we were "normal" on blood tests, and friends, colleagues and loved ones didn't spot the signs. So, even if it's not going to happen to you, it's worth being aware so that you can help your friend, your mother, your sister - because this is the sucky thing about it, once you're ill, the odds are you won't spot it, or fight to get the right diagnosis (I was told "stress" for three years) until it's very late in the day because you'll be cognitively impaired by the lack of thyroid.


Websites

http://www.stopthethyroidmadness.com/ - great website, lots of very good info and one angry author, quite rightly so
http://thyroid.about.com/bio/Mary-Shomon-350.htm Great author on recovering from thyroid problems and hashimotos, and some fascinating interviews and articles. Not so easily laid out though as Stop the Thyroid Madness
http://www.endfatigue.com/ Jacob Teitelbaum's website - I ignored this resource for a long time but there's a lot of useful information on here, particularly if you have clotting problems, you don't have health insurance (it helps you order the first round of blood tests) or Type 2 Hypothyroidism and energy issues.
http://www.thyroidscience.com/
 http://www.naturalthyroidsolutions.com/Latest_Updates_and_News.html Dr John Lowe was at the forefront of debunking T4 only treatment, but tragically passed away in January 2012.  There's some great articles on both sites
http://restormedicine.com/low-dose-naltrexone-san-diego/  Low Dose Naltrexone is the best immune modulating agent out there for things like Hashimotos and Fybromyalgia - unfortunately the research is at an early stage but annecdotally a lot of Hashimotos patients and Fybromyalgia patients are seeing benefits see - http://snapl.stanford.edu/research/ldn.html

Healthcare providers

http://thyroid.about.com/cs/doctors/a/topdocs.htm  Mary Shomon's patient curated list of thyroid doctors - it's not totally up to date, doesn't include everyone who should be on there, but it's a fantastic starting point.
http://fibroandfatigue.com/ Cutting edge clinics, aimed at fybromyalgia but often the clinic will have a thyroid specialist
http://www.holtorfmed.com/ Great treasure trove of useful information, clips and articles (check out the media page) The clinics are California only - and cutting edge, but a rather incestous relationship with the Fibro & Fatigue Clinics - Holtorf used to be medical director of the Fibro & Fatigue Clinics, and there are none of those in California and no Holtorf clinics outside California
http://www.holtraceuticals.com/ A lot of thyroid care providers have some relationship with a supplement provider, Holtorf takes it to a whole new level - some are completely unique products of Holtorf's research, like Fibrinex or Flex Plus.  But check the components closely, some are very banal collections of ingredients, some hugely overlap, and some are rebrands at a 200% mark up, so make sure that the product you're buying (a) has "Manufactured for Kent Holtorf" on the label (b) you can't get it elsewhere cheaper.

Pharmacies

http://www.americanintegrative.com/ I hope to build this list out - but effective slow release T3 is the gold standard that everyone is looking for and this is the only pharmacy I know that can produce it.  Also will compound all sorts of other things including Low Dose Naltrexone.

Books

If you have Hypothyroidism there is going to come a point where you're going to have to sit down and read some of these.  In rough order of usefulness:

Stop the Thyroid Madness: a Patient Revolution Against Decades of Inferior Treatment; M.Ed. Janie A. Bowthorpe From Fatigued to Fantastic; Jacob Teitelbaum
Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You... That You Need to Know (Revised Edition); Mary J. Shomon
Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal [Paperback]; Datis Kharrazian (Author)
Feeling Fat, Fuzzy, or Frazzled?: A 3-Step Program to: Restore Thyroid, Adrenal, and Reproductive Balance, Beat Hormone Havoc, and Feel Better Fast!; Richard Shames (Author);  Karilee Shames (Author)