Friday, January 14, 2011

Ouch, my aching joints... Hashimoto's too? Really? (Originally Written 9/4/10)



(I've been writing this series of notes not as a way of saying "Poor Me" or as a way to worry anyone but, to raise awareness of what this whole Hashimoto's thing is about. If you have questions, PLEASE ASK.)
I had noticed recently that my ankles were hurting. Not just the hurt of being on my feet too much but, a deep hurting. I in turn also noticed that this hurt was traveling up my right shin. Then I noticed the give away, my fingers just hurt and refused to work with me when I needed to type something, grip something, or fasten anything like necklace. So I rub them vigorously as if that will bring them back to life... And I mumble... Hashimoto's. I say this because as it turns out, dull achy painful joints are a part of the diagnosis for some. I'm a pretty active person and I'm not usually affected by a little ache. This time, it's different. This time, it's a tougher ach to make disappear.
I use to think this was such a "cute" disease. It's just a simple thyroid issue. It's hypothyroidism and I'll be fine. It's such a common thing so, why am I complaining and carrying on so much? I should just let it go and move on. Nope, not that simple. My doctor will not put me on the standard medication Synthroid until my levels get higher than normal. Does that mean that my symptoms have to keep increasing until I can't stand it anymore? Not big on pain here and the heart palpitations alone are frightening and painful sometimes. Not such a "cute" disease anymore. Not just a simple hypothyroid case either. This disease is rather complex and I don't think very many really understand it.
I understand what is going on within me though. I should not have to know things like Leaky Gut SyndromeAdrenal Fatigue, or the fact that I am now suddenly Gluten free. I should not have to know that I have an increased chance of developing rheumatoid arthritis, lupus, or MS in my still young life. Not to mention any of the other complications that can develop the longer this goes untreated. And did I mention the doc's don't really know how long I ahve had it???  I also understand that the things I do now, can decrease my chances of developing those things. Still not much I can do about the leaky gut, adrenal fatigue, or the gluten thing... Those are here to stay.
I get annoyed with myself because I've become that patron at a restaurant. I'm the one that has to send her meal back because the waitress said rice when she meant rice pilaf and now the pilaf is touching a scallop so I can't eat any of it. I've become that girl who could unknowingly eat something bad and fall ill almost immediately (fun right?). I've become that girl that no one really understands why she is so picky about her food (You're curious but afraid to ask.). I've become the high maintenance date that has very few options when she goes out. I can’t even drink beer anymore unless it's gluten free. The upside is that I was a good cook before, I'm a great gluten free cook now!
To me, autoimmune diseases are like peeling an onion. There are more layers than just a simple set of numbers from blood work. I need to treat the whole disease and if that means, changing my diet and adding a crap load (yes, I typed crap load) of supplements to get me through the day, I'll do it. I am currently taking Calcium, Magnesium, Glucosamine, Vit B Complex, Vit C, and a Mulit for active women. To wait until this Hashimoto's Disease turns into Hypothyroidism is absurd to me. Mostly because in the mean time, I get to feel the affects of things like adrenal fatigue because those glands have been working overtime for way too long. And the leaky gut syndrome since now my digestion is all out of whack because I'm a lover of bread for 37 years. That and the fact that my whole system has been working overtime for just way way to long. There are bound to be a few issues. And yet a doctor won't touch me until my levels are pushed into hypothyroidism... It is my hope that they figure out what is going on. Some kind of root cause to this disease and they treat it instead of making us wait it out. Because waiting it out hurts and is uncomfortable some days and makes a person endure more than she nees to sometimes.
In the mean time, my hair is still falling out, my hands still shake a little, I can look at a word and not even know what it is because my brain is too slow to connect to my eyes (wait for it, it will catch up). Not to mention that I sometimes search for a word that I know for a minute or two and the fact that I more often than not trip over simple words now when speaking. I use to be such a good speaker but whatever right, it's just Hashimoto's Disease. I get cranky easily these days ( But I feel who wouldn't with this?!?) too. Basic motor function is a problem some days and I can now trip on flat surfaces or my foot drags ever so slightly. So, I either look like frakenstein dragging his foot or as if I've been drinking. And yet, I want to be clear that I am still very independent and very much a functioning member of society. I still hold a job and maintain my own home (by my self). I just have some really bad days sometimes and I'm prone to going to bed before 10 pm now. I don't sleep like a rock since the palpitations wake me up again and again. But I'll be fine until it turns into Hypothyroidism... Then it will be time to treat me. Seriously?  I would love to know.

15 comments:

  1. Oh Singing therapist! I hear you! I am actually on levoxy whatever but I am aching. First my feet and calves, now my neck and jaw. If you have hashimoto's and symptoms, your damned doctor should have given you treatment. My speech has slowed down and that's not good, especially as I'm an English teacher. I had depression first (now I hear that may have been caused by Hashimoto's) and am also taking zoloft. I feel nausea for short periods almost everyday and I think I'm driving my fiancee crazy with my cyberchondriac searching for answers online. After I saw an endocrinologist I couldn't remember a thing he said apart from that I had Hashimoto's and there was no way of knowing for how long.

    A few months ago I had some weird tremors in my arms and then my right side felt paralysed. I thought I was having a stroke. I still don't know what the f it was. My doctor says it was a panic attack but... well, it just wasn't.

    Stupid Hashimoto's.

    Thank you for posting. It is a relief to know I'm not imagining this stuff. No-one told me about these frigging aches. and hell yes, my temper has really ramped up. I'm so sick of feeling sick. Tonight my fiancee asked me if was dying. I dunno. Feels like it. :(

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  2. Karena, Thanks for reading my little blog. I have not written in a while probably because I have been feeling really good. Maybe I should write about that?? Seriously, have you considered changing your diet? I am all gluten free and organic now and I do supplements. Plus, I stay active by jogging, hiking, and what ever else I think I can do. I don't let this disease get me down in anh way any more. I control it. It does not control me. I'm still not on medication and not intersted in having a Doc put me on anything any time soon. Stop looking for the reason for everything you are experiencing and just experience life. I know that it's hard but I would start with the dietary changes as they alleviate a lot of symptoms within weeks. Take care and remember. Don't let the disease control you.
    ~TST

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  3. I was diagnosed with hashi's several years ago. The aching joints are really starting to be a major problem. Can you give me some advice about starting the gluten-free lifestyle? My poor brain has trouble comprehending and remembering what I read online. Thought maybe you could give me some practical advice that I could remember. Thanks.

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  4. Hi there... It's really just a matter of first deciding that this is the way that you wnat to live to feel better. It will take some time to eliminate gluten from your diet. I first went a day without eating any bread products just to see if I could feel a difference and I really could. Then over a couple of months, I converted my kitchen to be gluten free. I began using gluten free flours for baking, I eliminated all products taht were not gluten free and most importantly, I took the time to read the labels of the food I was eating. I was surprised at the number of foods that had enriched wheat flour as a main ingredient. I eliminated those as well. Now, I eat more rice and corn products, along with fresh veggies, meat that is also designated gluten free (grass fed beef and very little chicken), and a lot of organic products. It takes time and patience to convert over to this diet so, just be aware of what you are eating. On a side note, exercise also helps me with the stiff joints. Keep active too!

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  5. Hi, I stumbled on your blog here and nodded slightly to myself, reading most of the things up there that you initially posted. It sounds like you are doing better. What is going on now? I am 37 and have been healthy and active my whole life. I started having weight gain, hair loss, achiness, brain fog, brittle nails.. etc a couple of years ago and no matter how strict I was to diet and exercise, I couldnt lose even one pound. 3 doctors later, I got the news that I was right all along, I had hypothyroidism. My advice on this is never, ever trust your doctor or his nurse to give you lab results. GO GET A COPY! This is how I found out my progesterone was through the floor, estrogen was in the danger zone and TSH was 5.0, indicating one big mess. We started levo and bio identical progesterone and alot of symptoms improved, I even lost 30 lbs (yay!) but then it all came to a crashing halt. The weight loss stopped and the hypo symptoms are back. I went on synthroid and now my Frees are normal but TSH is crazy suppressed. 0.004- 0.07, for over six months but no hyper symptoms. My doc keeps lowering my synthroid but I still feel aweful. My wrists, neck, back and eyes are on fire and my hair loss is scaring me.. im now suspecting hashi's. Im waiting to do the bloodwork. No neck lump or nodules, just horrid symptoms again. The biggest is the inflammation and inability to lose this last 15 lbs. I cook and eat paleo/ atkins and have since high school.. I would love an update from you all here :)

    Tracy
    TaylorTracy37@yahoo.com

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  6. I strongly recommend anyone reading this to read "Stop the Thyroid Madness" and/or "Living Well with Hypothyroidism." Also, google the advantages of desiccated thyroid vs. synthetic T4 only thyroid. I have Hashimoto's (diagnosed last week) and hypothyroidism (diagnosed 2009) and wish I had read these books back in 2009. I might have saved myself a year of pain. Just check it out for yourselves and form your own opinion. If it makes sense, then go with your gut.

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  7. I have Hashimoto's and go through periods of good and bad, bad more than good. My labs look normal but I feel like crap, weight gain, joint pain, brain fog, etc. I feel like my meds aren't working anymore.. at all. Is it possible that I've become immune to the effects of synthetic thyroid ? I'm hoping that a change to Natural Thyroid will start working and I will feel better?

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  8. I have hashimotos...im on a high dose of thyroid medication and my levels are so out of whack....i feel tired most days and at night feel nausious and have to go to bed ....i have joint aches...and out of nowhere my right knee flares up.. I had xrays ultrasounds fluid drained from the knee and none of the tests showed anything...im having an MRI on the knee next week....i get a strange sort of feeling on and off down my left side and feel i could be having a stroke and then it goes away.....i feel all of this is connected to my thyroid...i have gained 20 kilos in the last 18 months....but i havent eaten healthy in that time either .. I need to change my eating styles and i feel once i do i will improve my thyroid levels and overall health.....i really do think food has a huge role to play....

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    1. Hi Anonymous, I was wondering how your MRI went on your knee and if you changed your diet to gluten free did it help? My 13 year old daughter has been having knee pain (plus many other various pains but the knee has been constant) for about a year now. I've taken her to doctors, physiotherapists and a chiropractor. The last specialist basically told me it was nerve pain from a broken foot last year and all in her head but referred us for an MRI anyway which I haven't done yet. She has Hashimoto's so I've been doing some research and am now finding out that the pains might be related to that and that I should have her on a gluten free diet (her endocrinologist has never mentioned this). I would appreciate your feedback. Michelle.

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    2. I replied to you, please see below.

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  9. I have Hashimotos too. To the person with the strange feeling down the LHS, I get that too. My TSH went really high recently and I got a tremor starting in my head that went down the LHS. That has settled with an antiepileptic medication. I am experimenting with Bowen Therapy for the LHS thing. I am not epileptic. It is just I got the tremor there rather than my hands.

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  10. Just to add to the LHS thing, the tremor came much later, the LHS thing has come in waves for a couple of years culminating with this latest Hashimotos episode, which is my second in 20 years.

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  11. Reading your blog is like reading a story about my life. I finally got connected with an integrative medical dr who fixed my leaky gut and I feel so much better! But my joint pain is still a big problem were trying to figure out. Some ppl do well on low dose Naltrexone, so find yourself an integrative medicine dr who will treat your immune system. Good luck!

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  12. Reading your blog is like reading a story about my life. I finally got connected with an integrative medical dr who fixed my leaky gut and I feel so much better! But my joint pain is still a big problem were trying to figure out. Some ppl do well on low dose Naltrexone, so find yourself an integrative medicine dr who will treat your immune system. Good luck!

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  13. For those with hashimoto's, if you are taking only a synthetic hormone, see if they can put you on a dessicated natural hormone. It has both T3 and T4 which is often needed by those with Hashimoto's because one is needed by the other to be utilized. Synthetics do not have both....it may show in your blood that you have enough, but may not be being utilized. When my doctor put me on both, I felt a lot better. I also was able to drop the total milligrams from 125 to 80 over a short period of time.

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