"It can be frustrating, when the music sounds muddy and lifeless,
and your fingers lock up and ache after a few minutes of scales,
but again, tell yourself that it will start to improve when the treatment improves,
and you will again hear Bach as he was intended to be heard".
I was diagnosed with Hashimoto's Thyroiditis some years ago. My medical ignorance being what it is, my first question was: What's a thyroid? I was told that it was nothing to worry about, there is a simple treatment and, provided I took a tablet every day, I would hardly notice it.
Well, for many people that may be true, but apparently not for me. There was some improvement for a while, but after about eighteen months of trying different doses, and innumerable tests, and endless trips to the doctor, I seemed to be back where I started from. I doubt that I have to go into descriptions; those who have been there know what I'm talking about.
For example, you have no doubt read the phrase "safe and effective" to describe T4-only medication. That strikes me as more advertising slogan that scientific statement, and rather annoys me. For the available data strongly suggests that a better statement would be "safe OR effective"; at doses low enough to not do harm, it is ineffective, while raising the dose to the point where it has an impact causes a great many side effects, which have been documented in several places. At the very least I felt that the profession should be asked to defend such a claim. I recognized the injustice of a system that condemned many people to unnecessary suffering; I felt, indeed still feel, that I cannot stand by and do nothing if there is any possibility of my bringing useful change.
To cut a long story short, I eventually found a doctor who listened when I said I was not well, and spent some months with me working out a treatment that worked for me.
So I've now been for many years following the protocol we worked out, with regular tests to make sure that things are still on track, and life has been as close to normal as advancing years and the usual run of colds and flu.
My treatment began with Eutroxsig, T4 only, which I endured for around five years. Then in late 2010 a lady put me on natural desiccated thyroid extract (NDT) from the compounding chemist; the result was amazing. I have been taking it ever since, and in spite of all the dire warnings, I have suffered no ill effects.
In fact, as one of the results of old age, I have an annual visit to a heart specialist, which means an ECG and ultrasound. I asked her a couple of years ago whether there was any evidence of damage, or wear and tear, as a result of my taking medication which is strongly discouraged, and she told me there is none. Which confirms what that internal signalling system tells me, that this is doing me good not harm.
Actually, I am doing the lady who prescribed natural thyroid extract less than justice. She spent the best part of a year in what she described as reversing the effects of several years inadequate treatment. I took various supplements, such as, DHEA and testosterone for a time, and now continue to take sub-lingual vitamin B12, vitamin D and zinc, as my present doctor encourages this.
It may well be that everything would have recovered naturally, once the thyroid medication was sorted; our bodies are amazingly resilient if we treat them properly. Or I could have done it all myself, perhaps
with some help from the local health food store. It's just so much easier with a doctor who is on the ball.
And it seems to me that the centrepiece, the item that made everything possible, was the natural thyroid extract. To be honest, with my medical ignorance, I wouldn't mind if they gave me extract of moonbeams or whatever, just so long as it works. Coming from an engineering background, I find it almost beyond belief that, when I tell a doctor that the treatment is not working, I am not improving, he tries to tell me it is and that I am imagining things. Try that sort of trick with a helicopter pilot facing a blank screen and see the sort of reception you get.
Signs and Symptoms:
It's a bit tricky to try and remember those fuzzy years while Hashimoto's was dominating my life. Well, nobody enjoys raking over unpleasant times. I also have a suspicion that those years had something of a permanent effect on my memory; not only is that time a bit vague, but my memory of the years before it hit seem a bit scrambled, as if they had been slightly shuffled like a pack of cards. Then again, perhaps that's just old age creeping up on me. I know I was diagnosed at the end of 2005, and I started effective treatment late 2010, but in between is all a bit fuzzy. So here goes.
Sleep apnoea: This is probably my wife's most vivid memory. All I can remember is dreaming that I was trapped under water, or rubble or something, and having to struggle to get back to the surface. I would wake up gasping for breath, usually sweating from the effort. Often I woke because my wife had prodded me to start breathing again; she spent many sleepless nights listening for the moment when I stopped. I don't recall it being related to anything particular that I did or didn't do, it just seemed to happen fairly regularly. Fortunately it stopped almost immediately when my treatment changed.
Brain fog: A good label, but from what I recall it covers a range of things, all related to a fuzzy head. Best way I can describe it is as feeling somewhat spaced out all the time, outside the world around me, looking on without really participating in any of it. Things became very difficult, for example, in a conversation; trying to concentrate enough to follow what the other person was saying took a tremendous effort. More than once I would lose the thread of what I myself was saying in mid sentence (which seemed to others rather like old age catching up with me). Meetings were a real ordeal; trying to follow the contributions of half a dozen people was usually beyond me, and asking me for an opinion threw me into confusion. The usual comments were: "The old feller's lost it again", or "Away with the fairies".
Concentrating on any task was difficult and tiring, logical thinking was slow and took a great deal of effort. As much of my work involved things such as computer programming, work became a major problem. I was extremely fortunate in having a supportive employer, but we could both see that if things didn't improve I would eventually be unable to do the job. Which, in the way we all do, made me determined to grit my teeth and try harder; that only seemed to make matters worse.
Muscle aches and pains: This seemed to hit me hardest in the fingers, although I often had cramps in the feet and legs, particularly at night. I noticed the problems in my hands and fingers most when trying to do something intricate, such as assembling something under a magnifying lamp, or playing guitar. In fact, this was a bit more complex, and doesn't really fit into any single category. Assembling something complex and small requires both well behaved fingers and good coordination between hand and eye, as well as concentration. Well, by a massive effort I could keep it up for a few minutes, but then my fingers would cramp and my eyesight start to blur, and the only relief was to sit and wait for things to improve. Even then, the finished work was usually pretty poor. The same situation applied if I tried to play guitar; cramps in my fingers after a few minutes, and a muddy un-musical sound at best. Well, guitar could be classed as hobby, but complex assembly was part of my job, so that loss didn't augur well for my future.
Digestive upsets: Pretty much permanent. It seemed as if eating anything caused problems; a full meal left me exhausted, unable to do anything other than sit and wait until my body had dealt with it. Trying to eat a quick lunch and then get on with the job was a recipe for disaster, leaving me shaking and unable to function. And then my bowels never seemed to be comfortable, constipated all the time. I tried to work out which foods caused the most difficulty, but beyond a preference for soup or stews, preferably bland, nothing stands out; all food seemed to upset me somehow.
Anxiety: High and permanent. Much of this was probably due to the constant background feeling of being unwell, the sort of feeling you get when coming down with something (which I did often; I seemed to be susceptible to every passing virus). Plus the constant worry of how to get through the day when even the simplest tasks seemed like a major undertaking. I remember telling myself that I would be okay if I could just get a peaceful day to rest and recover a bit, but it never seemed to happen, or if I did get a break it didn't seem to improve anything. This all hit me hard, as I had never been a person who worried too much before; if there is a problem, deal with it and move on. But here was something which I couldn't deal with, or move on, it just stayed with me.
I suspect that a large part of the anxiety was the peculiar background feeling that whatever store of energy or enthusiasm on which I was running to get through each day would eventually run out, and there would be nothing left for me but to sit and vegetate for the rest of my life; I almost felt as if I could estimate how many years I had left. I don't know what would have happened if I had not found effective treatment by then; perhaps I don't really want to think about it.
Getting on to other matters, there are a couple of what might be called supplements, although they are usually classified as foods, which I have found of benefit.
One is coconut oil, which seems to do wonders in clearing the brain fog that used to waylay me every time I had something important to do. I used to use coconut cream, which is tasty anyway, but eventually switched to the oil, which I mix into my oatmeal for breakfast. I should tell you that several health professionals have warned me that it causes raised cholesterol, so you might want to discuss this with your doctor first. I've no idea why it seems so effective.
The other is macadamia nuts, which seem to help with the constant weariness that makes everything a drag. A handful seems to give me a new burst of energy, just when I feel it's time to drop. It's no miracle, but used to get me through the ordeal of the drive home from work. I don't know of any possible harmful effects, so I've kept it up over the years, expensive as they have become. Like all nuts, they can be a bit hard on the teeth, so these days I crush them in a food processor and have them sprinkled on ice cream or the like.
Allergens: Beyond that, I try and eat as natural as possible, avoid as much as possible anything whose ingredients come with numbers. Well, anybody dealing with allergies needs no advice from me in that area. For example, my favourite bread lists the ingredients as flour, yeast and water. My favourite meal is probably cooked oatmeal with full cream milk, preferably unhomogenized; again, various medical people have warned me that this is not healthy, but that is one area where, with no disrespect intended, I prefer to listen to my body.
And that would probably be my most important advice: listen to your body. You and it have lived together for a good while now, and hopefully learned to trust each other. It will tell you when things are not right, in the hope that you will hear what it says, and set out to deal with what it is saying. Don't be put off by those well-meaning people telling you things like oh, you're getting old, you're imagining things, you just need to get out more, and so on.
There are supposed to be, scattered around the country, various headstones in various cemeteries, each with the epitaph: I told you I was crook. You deserve better than that, you make sure you find that treatment that works for you.
What I can do, perhaps, is pass on some tips (from the depths of my ignorance) which may be of some use to somebody else.
If you are suffering from a thyroid disorder, and the treatment you are receiving doesn't appear to be helping, then you have one all-important and urgent task: find a doctor who accepts what you say when you tell him/her that you are not well, and is prepared to spend the time and effort working with you to find a treatment that does help. I know of no other way to successfully deal with the situation. Yes, it takes time and energy, right when you don't feel like doing anything and your head it too fuzzy to make sense to yourself, let alone somebody else. But I don't know of any alternative. Think of it as your full time occupation, your job, the most important task you have ever undertaken.
One thing that can help, both in searching and in talking to your doctor, is to keep notes, even a diary, of what happens, how you feel, what seems to help and what doesn't. The more details you record to jog your memory the better; it doesn't hurt to also add a date and time to everything you record. Even if you don't want to show it to your doctor, it will help you make some notes to take with you to the surgery; nobody has to tell me how a poor memory can make things difficult! I wish I had taken my advice right back at the beginning.
Once effective treatment starts to do its job, the problems that are currently getting in the way will start to clear, and it will get easier as you go. So, don't postpone the task, the sooner you get at it the sooner you will start to improve.