Thursday, 30 August 2012

The story so far...

Well, I've been a rubbish blogger! I've been in a bit of a hypo hole and the thought of blogging, or really doing anything much, has been kind of overwhelming. Such are the fluctuations of this illness. But I'm now much more used to things than I was a few years ago!

I recently convinced my doctor to prescribe me T3 in combination with T4 (following a year-and-a-half slog with T4) because I'm still pretty fatigued, breathless and brain-fogged (and that's just the tip of the fun thyroid ice-berg). I was diagnosed in 2008 after I mentioned to a doctor how I always felt tired and low-mooded - a TSH test was done and ta-da - I was officially hypothyroid.

I then promptly forgot all about my diagnosis.

I was told that as I didn't feel too bad I wouldn't need treatment. Thyroid problems? No biggie. I was casually shrugged out of the office. Blissfully ignorant, I shrugged too and probably just assumed it was normal to feel constantly tired. Heh, it was my first year of student life after all. Wind forward two years of long lie-ins, missed lectures, colds, infections and bouts of tonsillitis to November 2010, when I crashed. Which is what was obviously going to happen. Because, had any doctor bothered to run an antibodies test, they would have discovered that I had Hashimoto's thyroiditis, which is autoimmune. Which is progressive. I should have been on treatment from day one.

I wonder whether that two-year delay (or even longer - I started feeling iffy long before I was 18 but this is such a creeping, insidious disease that I didn't really notice the changes) played a part in my apparent resistance to thyroxine, which can happen when hypothyroidism has been left untreated for a long while.

The three months after I crashed were awful. I was exhausted, heavy, breathless, nauseous and dizzy with a pounding heart on an almost daily basis. My hair was like straw and it carpeted my floor. Feeling delirious with a brain/body disconnect, I questioned life, and not in the philosophical sense..! I went from pulmonologist to cardiologist to physiotherapist but none gave me definitive answers. Treatments didn't work. Then in February 2011 I remembered I'd once been diagnosed with an underactive thyroid (...I'm blaming the brain-fog for my forgetfulness...). I started on 25mcg thyroxine and eventually increased to 75mcg.

Thyroxine has actually taken the edge off my symptoms but they're definitely still there! I can find it difficult to easily draw full breaths, and at night I sleep propped up to support my 'heavy' chest. The tiredness too is not a normal tiredness. I was talking to a friend about it who jokingly (right?!) suggested I just needed a good night's sleep, and I found myself describing it as a sort of heavy, bone-deep tiredness, not necessarily sleepiness. At night I also tend to be tired but wired!  

I've been to see three so-called specialists but because all my blood work is now in range my thyroid is clearly not the cause of the same ongoing symptoms. Instead I've been offered anti-depressants and recommended therapy. Is it too much to ask that specialists keep up with research? Treatment should be tailored to the individual and based on symptoms as well as tests. I eventually went to see a wonderful private doctor, who treats like that. He first had me increase my thyroxine, but this didn't work. The next step would have been to introduce T3 under his guidance but due to cost I've decided to go it alone.

Four weeks ago I also went to see a medically trained nutritionist who has put me on a strict diet which is similar to the Paleo diet many thyroid people are on. I'm glad I've taken the plunge because a clean, healthy diet is another essential piece of the puzzle, and I'm happy to have found a really knowledgeable doctor to guide me through it. Going cold turkey was actually painless and I don't crave sugar as much as I thought I would!

I don't want to speak too soon, but I do feel as though I have more energy!

13 comments:

  1. This post means alot to me, I suffer the exact same symptoms. Everything down to "iffy" feeling before college. The most troubling to me is the breathlessness or "oxygen hungry" feeling. I went to multiple doctors and to the ER just for all of them to tell me I'm just having panic attacks. I actually was just put on a very low dose (a child's dose apparently) of an anti-anxiety pill to finally see if that may starve off some of this.

    I would very much like to hear more about your diet and if it helps with your symptoms because I feel like i'm in the same boat!

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  2. Hi Maddy! It's an awful symptom isn't it; I often find myself having to focus and yawn to draw a full breath. I was essentially told it was all in my head. Doubt the anti-anxiety pill will sort you out! I've come across many people online with the same symptom, and have also found a few medical journals which reference it, as well as this article by Dr Lowe (great doctor but sadly his website is down at the moment because he passed away earlier this year; luckily I found a copy of the article online) - http://verbal-0rchid.com/wp/2010/03/air-hunger-to-death-breathing-problems-of-hypothyroid-patients/

    If all goes well with the diet I'll be sure to let you know more!

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  3. Jess,

    So happy to see that you are writing again. I hope the T3 works. I am going to ask, no probably beg my Endo to put me on NDT or Armour. I think my body needs the T3 and no one has done a reverse T3 panel on me, so who knows. Also, a friend of mind (HypoMan) told me that the air hunger so many of us experience is actually a symptom of being under or over medicated.

    Once again, it is so good to read your blog. Let me know how that diet works for you. I love being paleo, but I've switched over to primal by adding a bit of dairy. I must admit that I don't think the dairy is good for me and I believe it is causing my arthritis to act up. I just came up with that by the way. Hmm...I need to check into that. Anyway, keep blogging when you can and let us know how you are doing.

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  4. Welcome back to blogging. I'm going to say the same thing I said to ButerfliSoldier... I think you might have some adrenal issues going on. I'm not a doc, but check out my post from September 3rd and take a look at the link to Dr. Rind's metabolic scorecard. It may help you to figure out if your issues are coming from adrenals and not thyroid. Adrenals & Thyroid are like yin and yang and adrenal issues can be similar or confused with hypothyroid symptoms. I have Hashimotos and my labs are normal, though my symptoms are a cross between hypo/hyper - thyroid and they are really stemming from my adrenals, which are a bit exhausted.

    I'm glad the diet is helping. I don't notice much of a difference on a Paleo diet, but I know it is what is best for me and it makes me feel better from the sense that I know I'm eating what is good for me and I know it will help over time.

    I hope you continue to feel better.

    Take care,
    Autoimmune Girl
    http://autoimmunebattle.blogspot.com/2012/09/need-balance.html

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  5. What do you mean ' no T3 due to cost'? I added Cytomel & it is not more than the Synthroid which is not terrible ($24 per mo).

    God bless you

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  6. Have just found out I have Hashimoto's Disease and am looking for as much info as I can find. Thanks for this blog.

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  7. Thanks for being so honest about your journey, it helps me understand what could happen to me.

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  8. Hi Jess , Just read your story . I really Hope you will get well soon , just my recommendation why don't check Tom brimeyer thyroid diet plan . Hope it will bring solution to your problem

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  9. Hi Jess thanks for sharing. I would like to know how your getting on now

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  10. Hi, I have had Hashi's for 7 years now and finally found a doc that would let me try Armour Thyroid 3 years ago. Like most hashi's I experience hypo/hyper symptoms but my FT4 is on the low side and my FT3 is midline. I have been prescribed Ambien for sleep and sadly without it I would never get any rest at all. Over the past few years, randomly I would wake up in the middle of the night gasping for air....It is so frightening, mainly because I never knew until reading these posts that Hashi's can cause this. I assumed it was anxiety or panic, but it scares the crap out of me. Lately, this year, I have noticed that some days when I climb the stairs I am so out of breath and I yawn a lot....but these are random. I walk 3 days a week when I have the energy, but if I am tired when I start I end up having to slow down and regulate my breath because I feel like I can't get enough air in. All this being said, I have always been active until I was diagnosed with the dreadful disease several years ago and this breathing thing is worrying me. Does anyone have the problem where you wake up gasping (I mean, GASPING) like quick repeated breaths all going in until you finally have enough to exhale? I am about to turn 60 and I really don't want to die in my sleep I have a wonderful Endo, but I have never discussed this with him because until I Googled what was going on with me, I never knew it was connected to my hypothyroid issue. Any comments, suggestions or ideas would be comforting and appreciated. I have the Peter Pan Syndrome....I don't want to grow old and I certainly don't want to die before 100!!! Also, I am on Armour 150 and I alternate every other day with 180. Is anyone else on a higher dose and getting better results?

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  11. I can relate to this article because I dreamed about overcoming my hypothyroidism for years.

    I tried just about everything I could think of but nothing seemed to work.

    Then I did something different and I took back control of my life in a few short weeks. Now I’m happy and don't think about hypothyroidism anymore.

    If anyone's interested, here's a website that helped me a lot:

    http://www.journalofnaturalhealth.com/hypothyroidsolution

    Best of luck!

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