To mark this auspicious occasion I am about to complete the last instalment of my treatment history. I would be lying if I said I was insouciant about this as the last part of my "story" does not contain the extremes of the period 2002 to 2007. No bad thing for me at the time believe me! This period in my life was more a marathon than a sprint; the tortoise and the hare if you will, and continues to be to this day.
Anyway, as you will recall, during the period 2006 and 2007 I was "chasing nirvana" and at the beginning of 2008 I was at a loss as to why this had not been achieved. I came to the conclusion that I was not being patient enough and would have to stay on the same dose for longer than 12 weeks.
Basically at the start of 2008 all I knew for certain was that a daily dose of 200mcg of levothyroxine resulted in me having the symptoms of hyperthyroidism even though my blood tests indicated I was "normal". I decided, with the agreement of my Doctor, to start again on a dose of 125mcg but to give my body much more time to reach an optimal level.
The problem I have always had since being treated for hypothyroidism is that not all of my symptoms are constant over a period of time so I have never known if the dose I was taking had reached it's optimal level. Perhaps now is as good a time as any to list those symptoms I experience constantly and those that only show their face arbitrarily.
My constant symptoms of hypothyroidism;
- unrefreshing sleep
- "brain fog"
- poor concentration
- poor memory (disclaimer; I hope these lists are complete)
- little or no energy
- no sex drive
- painful lumps under the skin that take forever to heal and leave scarring
- irregular bowel movements (80% of the time constipated)
- trouble getting to sleep and waking up (75% of the time)
- sinus infection (50% of the time)
- depression, depressive thoughts (20% of the time)
- obsessive, obsessive thoughts (20% of the time)
- breathing difficulties, struggle to catch a full breath (10% of the time)
- pain in the bones of my; feet, ankles, knees and even hips (10% of the time)
- feeling really sleepy all day (10% of the time)
- gritty/sticky eyes (10% of the time)
- heart palpitations (5% of the time)
- anxiety/panic attacks (5% of the time)
Then there are the symptoms of hypothyroidism that I do not see or feel.... I really do not like thinking about that!
Since the beginning of 2008 I have only been on three doses of levothyroxine; 125mcg, 137.5mcg and 150mcg. I was on each of these doses for more than 40 weeks! Even after this length of time my symptoms did not settle down. I would experience false dawn after false dawn. Short periods of time without many of the arbitrary symptoms above would be followed by periods of nearly all of them. My thyroid gland seems to be unable (or unwilling!) to process levothyroxine consistently day after day. Frustrating!
All the while the practicalities of my life have been deteriorating;
- relationships with family and friends
- contract of employment terminated (August 2003)
- finances reached critical point
- forced to perform like a dancing bear to receive welfare benefits
- my home and garden desperately need some TLC, as do I! Here's hoping!
Ooops! I seem to have fallen in love with bullet points! No more, I promise!
The one thing I have managed to keep hold of is.... hope!
What is there without hope? Realising I was on too much medication in late 2005 gave me hope (as did the ensuing glimpse of normality). Stumbling across the beautiful Mary J. Shomon and her book renewed my hope. Finding the courage to start this blog, and the response from you for taking the time to read it, fills my heart with hope!
I seem to have been blessed with the patience of a saint.... not literally, but you get the point.... and this gives me? Yes! You've guessed it; hope!
You might remember that before my forced hiatus from this blog due to technical problems I had had a blood test and was awaiting the results. Remember? Good. I will provide details of this in my next post. The media have a name or phrase for this but it escapes me at the moment.... a "teaser" will have to do.
I would like to put on record again my appreciation for the comments I receive; they mean the world to me, and renew my strength and.... wait for it.... hope! Thank you and goodnight.
I would like to put on record again my appreciation for the comments I receive; they mean the world to me, and renew my strength and.... wait for it.... hope! Thank you and goodnight.
Hi
ReplyDeleteI have a recommendation for a book
http://www.thyroidbook.com/
(Why Do I Still Have Thyroid Symptoms? Datis Kharrazian)
I am about half the way through the book and whilst reading it have had quite a few light bulb moments! (and I have read a lot round this subject!!)
The book talks a lot about diet, paticuarly gluten free.
I am just about to have a go at going gluten free, starting tomorrow! Wish me luck :-)
More on the subject of gluten intolerance:
http://gluten-intolerance-symptoms.com/gluten-allergy-symptoms/
Keep blogging :)
Hi Robert. I'm reading your blog for the first time. I found you through Mary's website. I live in Oregon in the United States. Your symptoms sound a lot, to me, like maybe you have some kind of auto immune problem going on. Only because they sound like me and that's what's wrong with me besides the hypothyroidism. Would you consider seeing a rheumatologist? I love your sense of humor, keep up the good work on your blog and I hope you feel better real soon.
ReplyDeleteHi Robert,
ReplyDeleteI just read your story for the first time and see my own journey with hypothyroidism reflected in your blog! I credit Mary Shomon with starting me on the road to educating myself about treatment. Like yourself, after diagnosis my doctor kept telling me my TSH was within range, I should feel fine, it must all be in my head. An endocrinologist had the gall to tell me I was a busy mother and a pre-menopausal middle aged woman so I should expect to feel tired. (??!!) After feeling like hammered dog poo for the past 7 years on 137mcg of thyroxin, I finally found a doc who is himself a hypothyroid patient. He understood when I explained my symptoms and he tested my T3 levels, including Reverse T3. My RT3 was high and my Free T3 was normal range but very low! He explained that the more thyroxin I would take the more Reverse T3 my body made to counter act it and the worse I would feel. For the last year I have been taking cytomel (the fast acting T3 Hormone) along with my thyroxin (now reduced to 75mcg). For the first time in about 8 years, I feel 99% normal. I still pinch myself to be sure I'm not dreaming! I sleep well and wake up feeling good, my body doesn't hurt or ache so badly I have to hang onto walls when I get out of bed in the morning just to get to the bathroom. I can remember things again, I have my mind back! My heart goes out to you, you are fighting the good fight! Perhaps your doc would consider running a Free T3 and a Reverse T3 test just to see what your levels are? If the reverse T3 is high but still in normal range, maybe they could let you do a trial with the cytomel in conjunction with a lower dose of thyroxin? I will keep you in my prayers that you find the dosage that puts you in the thyroid sweet spot. Let us know how you are doing.
I am sitting here with tears in my eyes - 18 years of all of this for me - from the time I went through puberty to present. All of the symtoms listed above, no doctor listening to me because the famous TSH test said I was within the "normal" range. Technology has come so far, yet, not quite far enough. And then compound that with doctors who still practice in the "dark ages". It does seem like the current is always against thyroid patients doesn't it? But you are right Robert - there is hope - and new discoveries are made every day. It is so nice to know that there are many others out there who are experiencing the same frustrations and road blocks that I am. My journey continues after a total of 18 years (since I was 15). Sleeplessness, anxiety, depression, shyness, constipation, the CONSTANT fatigue - can't get to sleep, can't get up early, dry skin, dry hair, strained muscles, sickness, the list goes on and on and on. A lotion for this, a vitamin for that, this diet, that diet, this excercise program, that excercise program, this power-drink, that power-drink.......and, in the end, FRUSTRATION!! And the ever-present question of, "What the hell is wrong with me??!" Here is where I am at after many tests, tons of research (on my own) and much trail and error: 100mcg of Synthroid, gluten-free, casein-free, low sugar/carb diet and optimal amounts of Vitamin D (2,000-4,000 IU daily (the higher dose in the winter months)), Selenium (200mcg), Omega-3, and a good STRONG daily probiotic. All have me feeling about 70% better. From my own experience I believe the absorption of all of the above (Synthroid and vitamins) depends on what I have eaten that day. In some people (including me) gluten paralyzes the cilia in the intestines causing them to not function correctly. Cilia are responsible for "grabbing" nutrients in the intestines. When they are not working correctly, your body does not absorb the nutrients is should. Check this out if you have time - http://wiki.answers.com/Q/How_do_you_recognize_and_treat_wheat_gluten_and_grain_allergies. Hence some days (the days I go "off diet") I do not absorb nutrients like I should including my Synthroid and I find myself retreating backwards with my thyroid symtoms. Of course, this is not the entire answer, but this is what is working for me and maybe some of it will help you as well. In all of the reading I've done, one thing that keeps popping up in thyroid blogs is the gluten intolerence (some have the "dumping" affect, and some have the constipation (like me)). It may be worth your while to check it out? Anyway - I completely empathize with what you are going through - it has been a LONG road for me as well. I may be "walking" the marathon instead of "running" it, but, damnit, I refuse to give up. Maybe some day we will all see the finish line :) :) Good luck!!
ReplyDeleteThank you, Robert, for helping to bring awareness to our plight!
ReplyDeleteMay God bless you greatly!
Geez Robert! What a journey (if you can even call it that) you've been on over the past 8 years!! But I do know the hell that is both hypo and hyperthyroidism. I've suffered both ends of the scale too. Not anywhere near as long as you have though. This thyroid journey began for me nearly 2 years ago (will be 2 years mid september), I haven't felt hyper for a while now (thank goodness!) but suffer with the effects of hypo to this day. Idiot doctors don't help (as you know!) so it's a bit of a rough ride most the time!!
ReplyDeletei have noticed hypoman does not mention diet here food ways, things like hemp seeds or hemp seed oil. olive oil-chlorella(a source of natural iodine while flushing out toxins in the body. diet coke and all diet products contain aspartame(am sure he is aware of it now)was he drinking that stuff then or how about a blogg on his diet now. my girlfreind has the disease and one of the main reasons she got so sick is i feel diet products such as coke zero or diet coke etc. aspartame(artificial sweetner) is found in rat poison and brings on the symptoms of grave disease, aspartame is also gives the body various other diseases and is an appetite inducer which as i told my girlfreind would happen(which happened she got addicted to bread with all the crap salt in it(non iodized salt and tones) and her thyroid became toxic again.. also tap water with sodium fluoride is a killer for us all.would like to hear what he has to say on the subject of diet.
ReplyDeleteas an example of how negligent the medical association is they say they have no idea how kids are getting asthma at such a young age etc. when in fact its the chlorine in the water(which also causes lots of horrible diseases in children including bone cancer. anyhow. hope hypoman gets this as I would love to hear about his diet through the years and how he thinks it effected his condition.
cheers.
hi robert, im gonna say u are doing much better now,if it wasnt for blogs,i would be a definite mess,i am soo grateful for those,and have found myself in the right hands of care. i often wonder if u are hashimotos ,if u have been tested? something to consider,if u havent already done that. i wish u well, i kno this can be a very frustrating disease, hang in there...there is hope!!!
ReplyDeleteI feel I should say something....
ReplyDeleteHere goes, I have just been diagnosed with this hypothyroid about 30 days ago... It was shocking, I am 35 years old, male and felt completely normal, or so I thought. The doctor told me I should have noticed being slow and feeling odd but I didn't. I exercise often and work full time. But she started me on 125 dose. Been on it for about 1 month. Cant really tell if I feel better or worse.. As I read through your blog I can definitely relate to some of the symptoms, now looking back; panic attacks, anxiety, memory loss. Some of the symptoms were just out of nowhere, its like when I turned 35 things just changed, I thought it was getting older thing LCOMP013:) Feeling like a zombie in the morning or when up late watching TV.
Anyway, this is informative as I have no idea what I am up against and I suppose it is good that I am researching this early on. My mother has this as well and reading through this explains some of the erratic behavior she has sometime. I wish you well, and same for everyone else being treated for this. Thank you! fog