Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Archive for May 2009

How to treat yourself for hypothyroidism

with 11 comments

A controversial title, I think, but when one’s hand is forced by a stubborn doctor who is overly reliant on lab values, sometimes one has no choice.

Firstly, there is no point “treating” yourself with any other substance than thyroid hormone. I have been through the mill with fake thyroid cures. I used to take selenium and kelp (iodine) tablets until they came out of my ears. I’ve even tried potassium iodide – which makes me hyperactive and lately gives me a painful goiter. If you have a significant, long-lasting thyroid problem, there is no way it is down to iodine deficiency, unless you are living in a mountainous region of the third world, hundreds of miles from the sea, and you grow all your own food in your back yard. If you think you are iodine deficient, eat some white fish and visit the seaside.

There are a variety of “thyroid stimulating” or “metabolism boosting” herbal remedies and teas on the market. They are all rubbish. Green tea is supposed to be metabolism boosting, but like most salicylate-like substances, it actually raises the metabolism by acting as an uncoupling agent to the mitochondria, so that they “leak” or waste energy. Salicylates actually reduce thyroid hormone output and interfere with thyroid receptors. Ginger tea, cayenne and black pepper (piperine) are touted as thyroid-boosting agents that restore normal body temperature in hypothyroid patients. Don’t try them. They will likely make you feel very ill if you have hypothyroid induced food intolerances.

Coconut oil, in my opinion, will not solve your problem. As soon as I twittered the word “thyroid”, I was latched onto by coconut oil marketeers. These guys are absolute sharks. Coconut oil isn’t snake oil exactly, but it isn’t a wonder drug that will fix your thyroid either. I’ve googled myself silly, but I’ll be damned if I can’t find out how coconut oil is supposed to work its magic. There are just a lot of altie health sites out there proclaiming it as a miracle cure. I don’t personally understand how providing the mitochondria with a cheap-and-easy energy source has anything to do with thyroid hormone output. It may well rev-up the mitochondrial energy output, but it doesn’t make your thyroid produce any more T4. T4 production does more than just stimulate your body to burn energy and produce heat.

Having tried coconut oil for considerable periods of time, I found that it certainly gave me more energy, but it made a hell of a mess of my skin. Coconut oil, I’ve discovered, is quite notorious for causing eczema in apparently euthyroid individuals. This is probably because it contains a lot of salicylate-like polyphenols, and rather than supporting the thyroid, it may be working in the same mitochondrial uncoupling manner as many alleged herbal cures, and in fact lowering thyroid hormone function throughout the body while raising metabolism. When I tried coconut oil, I seemed to form a dependency on it, as it gave me the shakes if I didn’t take it at the same time every day.

The bottom line is, if you want to treat a thyroid problem, you treat it with thyroid hormone, nothing else.

Now, from the sources I have been reading, apparently thyroxine is a very safe drug, it is relatively hard to kill yourself with it from overdosing. Every drug has a risk. You can destroy your liver and kill yourself with as little as 12 grams of paracetamol, but the effective treatment dosage for paracetamol is 500mg – 1000mg. I believe the LD50 for thyroxine is something like 20mg/kg in rats – the equivalent of over a gram in a human. Thyroxine is prescribed in micrograms (1,000,000’s of a gram), so you would have a damned hard time of it getting hold of enough tablets to actually kill yourself. My prescription contains less than 1 milligram in total for the entire month. If you did manage to overdose to the extent of eating a gram of thyroid hormone, as some patients did back in the haphazard, slapdash early days of dessicated thyroid treatment, the result would be a heart attack.

Small overdoses, i.e. getting slightly hyperthyroid, are not really anything to worry about, though they undoubtedly feel very frightening at the time if one’s heart is racing or skipping. The treatment is simply to withdraw or reduce medication for several days and wait it out. Apparently most patients are very good at spotting when they are getting slightly hyper, and manage their own dosages quite effectively.

However, because initiating thyroxine treatment in a hypothyroid patient can produce side-effects apparently indicative of hyperthyroidism, doctors are very cautious to start out low and build up the dosage slowly until it falls within the ideal treatment range. The side-effects can include headaches, an increase in heart rate, and bouts of sweating. I have already experienced a few bouts of sweating, though whenever I’ve measured my body temperature, it’s still very low. This is a beautiful example of homeostasis at work, with the body being apparently so surprised by the presence of thyroid hormone that it honestly believes it’s too hot, when it isn’t.

It would be an essential part of self-management, that anyone attempting to treat themselves for hypothyroidism to familiarise themselves with the symptoms of hyperthyroidism, which include weight loss, increased appetite, palpitations, nervousness, diarrhea, abdominal cramps, sweating, tachycardia, increased pulse and blood pressure, cardiac arrhythmias, tremors, insomnia, heat intolerance, fever, and menstrual irregularities. Long term hyperthyroidism can lead to muscle and bone loss, so it is important to monitor one’s temperature, pulse, and blood pressure to ensure one isn’t getting carried away and thinks one is supergirl.

A number of open-minded thyroid doctors suggest that the danger of taking thyroxine is very low, and there is very little likelihood of any harm occurring in an apparently euthyroid patient (especially one with hypothyroid symptoms), who chooses to undertake a three month trial of thyroxine to see if it helps their symptoms.

Ideally, if one were to do this, one should of course do it under the supervision of a doctor, or at least a naturopath, who is willing to monitor your blood levels of thyroid hormone for signs of toxicity.

When you begin treatment for hypothyroidism, the doctor will begin you on 25-50mcg of thyroxine, depending largely on what they and you both feel comfortable with. Every month to six weeks, you are supposed to go back to the doctor to have your thyroid hormone levels checked again to make sure you haven’t gone hyperthyroid. If you haven’t, and you are still complaining of symptoms, you are supposed to get an increased dosage until you begin to feel better. Most people end up on around 150mcg of thyroxine. Sometimes doctors are downright stupid, and as soon as you fall within the normal reference range, they will stop increasing your dosage regardless of how you feel, and some will even cut off your supply of hormones(!) Make sure you get a good doctor, one who is willing to tailor your dosage to your individual needs, and view your lab results as a guideline only.

In the old days, before standardised blood tests, thyroid treatment was done blind without any blood tests, and the patient would simply tell the doctor whether they were feeling any better, whether they felt well, or whether they felt as though they were going hyper. Arguably, patients were better off before blood testing, as blood tests can be deceptive. Some hypothyroid patients claim that they do not feel well until they are statistically hyperthyroid. People have different needs.

Although today, most people end up on an average dosage of around 150mcg of thyroxine, in the old days, it was more like 300mcg of thyroxine, until doctors declared that one’s TSH was the all-important number, and it must remain above zero. This seems a little silly to me, because if you have no capacity at all to produce thyroid hormone (e.g. in thyroidectomy or radioiodine treatment), much as the pancreas of a T1 diabetic has no capacity at all to produce insulin, a TSH of greater than zero suggests that the pituitary is still signalling to the missing thyroid that more T4 is required than is being served.

That said, according to the patient advocacy sites, many people claim that they feel at their best when their T4 levels are in the upper third of the reference range, and their TSH is below 1.

You’re supposed to take your thyroxine tablets first thing in the morning on an empty stomach, leaving a couple of hours before eating. You shouldn’t take them with iron or calcium, which interfere with thyroxine absorption.

Another issue is the equivalent dosage between synthetic T4 preparations (thyroxine), and natural porcine extract (e.g. Armour thyroid). Although a lot of doctors dislike Armour thyroid for a variety of (IMHO) unjustifiable reasons, a subset of patients claim an improvement on Armour that they have not seen on synthetic T4.

Synthetic T4 and natural T4 are chemically identical, but synthetic preparations do not contain T3, which Armour thyroid does. T3 is considerably more potent on the cellular level than T4. The ratio of T3:T4 in porcine extract is roughly 1:4. The smallest dosage available of Armour is 1/4 grain, or 15 milligrams, which contains 2.25 mcg of T3 and 9.5 mcg of T4. Based on clinical responses, one 25mcg tablet of synthetic thyroxine is roughly equivalent to 1/4 grain, 15mg tablet of Armour thyroid.

A number of endocrinologists believe that one should not supplement entirely with Armour or other natural thyroid extracts because they contain this T3:T4 ratio of 1:4, claiming that our bodies prefer something close to a ratio of 1:14 T3:T4. Having examined this assertion, I don’t really understand it, as according to Dr Skinner, our bodies naturally contain a ratio of 1:4.5 T3:T4, very close to that provided by Armour.

The consequence of taking tablets that contain T3 is that your T4 can go quite low. The typical blood profile of someone taking Armour, is low TSH, low T4, and high/normal T3. This makes doctors unhappy. Possibly this profile might make one slightly more prone to fluctuations in energy if one were to miss a tablet or two. T4 has a half-life of about seven days, whereas T3 has a half-life of only 1.5 days. However, some people claim that they simply did not get better until they started taking a preparation containing T3, and there is also the possibility that it might supply other unknown and unidentified hormones to the body that synthetic thyroxine does not.

Should you wish to obtain thyroid hormone without a prescription, you may be able to buy it online. Rules vary from country to country regarding this. In the UK, one does not need a prescription to purchase small amounts of prescription drugs for oneself and one’s immediate family. International Pharmacy is one website I have seen recommended on a UK thyroid forum. Be aware that you will have to pay VAT on purchases greater than £18, they may be delayed by customs, and the postman will likely ask you for a cheque on your doorstep.

Remember that finding a doctor who will listen to your symptoms regardless of your laboratory tests is always the better route, for your safety and security, and these doctors do exist, it’s just a matter of asking the right people to point you in the right direction. Start on thyroid forums and patient advocacy sites, as many have lists of sympathetic doctors who consider symptoms to be more important than lab values. Once you start down the dark path, forever will it dominate your destiny! In other words, once you have started self-treating, it will be hard for you to confront your doctor about your self-prescribing of drugs, and any future thyroid hormone test that you take will be affected by your use of thyroid hormone. Should you wish to “go straight” in the future, but do not want to confide in your doctor, you will have to undergo a wash-out period of a few weeks before taking an unbiased thyroid test.

Of course I’m not advocating any of this. I’m just saying, if is how things are, this is how I would get around the problem…


Written by alienrobotgirl

31 May, 2009 at 2:12 am

Posted in Thyroid

Hallucinations in hypothyroidism

with 17 comments

Ack. I have a headache today and it looks like I’m having one of those months when my hormones are back to front. I was dropping to sleep on the couch, so went to bed early, but I’m unable to sleep so here I am writing this. I’m sweating like a porker again, but my temperature is only 36°C (96.8°F). I feel like I’m writing from the front-line of hell, sending back dispatches of complaints that probably no one wants to read. I’m so impatient to get better. I’ve just realised I’ve only been taking thyroxine for nine days now but it feels like a century. Progress is so slooow and subtle. I just realised today that I haven’t had dyslexia since I started the thyroxine. My memory is a little less flaky too. Apart from that, I think the lump in my throat has gone down quite a bit and my breathing is somewhat improved.

I finished reading Dr Gordon Skinner’s book today. Here is a very interesting quote.

Hallucinations – of a certain sort particularly in the peripheral vision – are virtually pathognomonic of hypothyroidism and represent perhaps the most poorly-recognised feature of the disease occurring in my experience in approximately 75% of patients and rarely in non-hypothyroidal patients if their history is taken in detail. […]

There can be ‘black floaters’ or ‘silvery wiggly things’ in front or at the side of the eyes but in more severe cases the patient is convinced that something is moving at the side of their vision or that somebody has passed by their side. Sometimes it’s all a bit sinister, the patient believes it might be Granny who has moved on […]

It is common for patients to imagine insects or other creatures most usually cats, spiders, beetles, flies or even snakes running around the floor which presumably relates to ocular mucopolysaccharide opacities which move across the floor if the eye fixes on that focal plane but these can be very real to the patient and can be quite frightening. One of my patients was a gardener who believed robins were flying around and eating his newly-planted seeds; interestingly  visual hallucinations are one of the first feature to disappear on thyroid replacement. […]

Auditory disturbance is less common. Some patients are notably deaf and yet deplore loud or even moderate noise for example the television at normal volume. Tinnitus is often troublesome and a few patients report auditory hallucination of voices or (quite commonly) the telephone ringing or mishear what was actually said to them. Other patients lose their sense of smell and/or taste and like other senses describe hallucinatory phenomena where water tastes sweet or food tastes metallic; these features disappear following thyroid replacement.

Going back a few weeks (though it feels like decades), towards the end of April when I began to realise that something was going horribly and insidiously wrong, I started to notice occasional black spots in my vision. I didn’t really think of these as hallucinations at the time, but sometimes I would think I saw a bird flying in the corner of my eye, or a fly crossing the living room, and once a shadow I thought was a person.

I get silver wriggles when I stare into the sky, but I thought everyone did? I’ve occasionally been mistaking dots for insects for some time. I am indeed prone to mishearing what is said to me, I find loud noise painful, and I have constant tinnitus at the moment.

For some time I’ve been getting a sweet taste in my mouth, usually just before tea when I return from walking the dog. I thought this must be ketones, but I couldn’t explain why they tasted sweet to me. Water tastes very bitter and strange at the moment. I have a constant metallic taste in my mouth. No, not a feature of lead poisoning, mercury poisoning, or any other metal poisoning. A feature of hypothyroidism I never knew about.

Perhaps the most frightening thing I experienced recently, was during my very bad patch towards the end of April. I was awoken very abruptly early one Saturday morning by an infuriating auto-dial to my mobile phone; a debt collections agency harrassing me for a debt I didn’t actually owe and for which I have since received an apology. After hanging up, I tried to get back to sleep, but I couldn’t. I could hear the faint ringing of the phone for several hours afterward. Presumably a small group of sensory neurons decided to fire in synchronicity. I had to put on my iPod and listen to music to drown it out. Usually I daren’t listen to music because that takes over my brain and gets stuck in my head!

I haven’t had any visual or auditory hallucinations since I began thyroxine, but my sense of taste is still very weird.

This all relates, presumably, to a disturbance in dopamine levels in different parts of the brain.

Going back ten years to university days, my schizophrenic friend who also had goiter, used to hallucinate insects and snakes crawling all over the floor. She had goiter for heaven’s sakes! She wrote a book about having schizophrenia. When I read it, I was horrified because she complained of having a goiterous lump in her throat, repeatedly asking to see a doctor, and for months her psychiatrists did nothing about it (she had been sectioned), but they kept treating and treating her mental symptoms with higher and higher doses of antipsychotics, and she was completely unresponsive to the antipsychotics. I don’t know whether anything was ever done about it. She probably has never made the connection. The last I heard about her through a friend, she was stuck in permanent residence at the psychiatric hospital, and had “developed an ME-like condition and had neuropathy, which she blamed on the antipsychotics.” Or, her doctor isn’t doing his job properly.

But for the grace of God, there go I.

Addendum: What on earth just possessed me? I just “came out” on my onymous blog and posted a link to it on facebook, declaring, in a rather martyred post, that I was misdiagnosed with fibromylagia twenty years ago and actually I’m hypothyroid. Hmm. A sign of impaired judgement. I am rather emo again tonight. Ah well, some of my real life friends did need a slap around the face regarding how they have treated me in the past (or are still treating me) over this whole thing. I just hope thyroxine treatment makes me less passive-aggressive… If one didn’t LOL one would cry!

Written by alienrobotgirl

29 May, 2009 at 10:41 pm

Posted in Thyroid

Some insights from Doctor Skinner

with 2 comments

Last night my brain fog was so bad that I took some B12. The ole’ B12 and I have a tempestuous relationship, as I seem to need a little now and then to clear up symptoms, but it frequently makes me irritable, gives me insomnia, and mucks around with my heartbeat. One interesting thing I’ve found is that B12 increases my confidence. I’ve often taken it before going out to socialise with people for this reason. Apparently I needed some B12, because this morning I woke up clear-headed, cheerful, and I actually felt confident enough to phone the office of the great Scottish thyroid doctor, Dr Gordon Skinner, to enquire about his fees, consultation times, and how to get a referral. If you know me, then you know I don’t make phone calls. B12 deficiency is very common in hypothyroidism. This could well explain my curious reactions to methylation cycle vitamins.

Also, amazingly (and I don’t attribute the mood changes to this at all), I got my period this evening. I was expecting at least three more days of torture and temperature fluctuations. The thyroxine must be working better than I thought (though, alas, my carpal-leg-syndrome continues). I also spent the day sitting in the garden deliberately (though unsuccessfully) trying to overheat myself, which might have helped. The last time I got surprised by my period was just after Christmas, shortly after that Yersinia-like food poisoning. I also had a spell of very good skin and easy weight regulation back then. I really do suspect that that food poisoning damaged my thyroid again and gave me a short period of high or normal T4, before plunging me into my current state. In a way I’m quite thankful it happened as I’ve been balancing on a knife-edge for so long now.

To my delight, the good Doctor Skinner’s book about hypothyroidism arrived in the post today. Hopefully, if I can get my heel-dragging, skeptical family doctor to give me a referral, I would like to go and see Doctor Skinner. Without quoting his entire book, here are a few insightful extracts:

In my experience the most common identifiable precipitating cause is infection and the most frequent by far is a history of infectious mononucleosis or an infectious ‘mononucleosis like’ or ‘glandular fever like’ illness while the highest proportion of hypothyroid patients follow adult chicken pox which is less common in absolute terms than glandular fever. […] A history of influenza and particularly influenza B is common and a notable number of patients developed hypothyroidism following an outbreak of influenza B in 1989 in Birmingham, UK.

Other infections can often be identified as precipitating causes, most commonly streptococcal sore throat, food poisoning and often an ill defined ‘viral’ illness where many patients report an acute illness associated with ‘utter fatigue’, fever, diarrhoea and ‘collapse’ and I have never resolved the nature of this problem…

Doctor Skinner later describes how non-surgical trauma such as car accidents appear to trigger a problem in some people, while others appear to develop hypothyroidism after an emotional upset such as a death or a divorce. This is very interesting, as a number of failsafers report that their food intolerance was triggered after a major life event like this too. Apparently four of his patients attribute their hypothyroidism onset to the physical trauma of running in a full marathon. I have a number of friends who have been doing this marathon nonsense. You heard it here first: it’s stupid and dangerous, and making £200 for your favourite charity just isn’t worth ending up like me.

Doctor Skinner describes how many of his hypothyroid patients can be identified by their demeanour.

Hypothyroid patients tend to come into the consulting room in a fearful or ‘quietly agitated’ state probably because they’ve had multiple rejections and been given the big DMO [depressive, menopausal, overweight] tag [by their doctor] which can include a reprimand for the greatest sin of all which is presuming or even suggesting that thyroid replacement might help them lose weight. The patient will often plonk themselves down […] slumped as if she can hardly hold up her head or her back can hardly support her […] She frequently has a badly-written-out list of clinical features […] Basically she has such a poor memory and is usually so lacking in confidence that she does not trust herself to ‘remember everything’ and her memory can be so fraught for recent events that she depends entirely on the list. […] [A] significant number have not opened and read the referral letter […] It’s all back to a lack of confidence, fear of confrontation and general fear of establishment and of being out of line which is a feature of many hypothyroid patients.

This made me hoot with laughter, as it is a perfect description of me, two weeks ago, walking into the doctors’ office, with my scrawled list of symptoms, which I did indeed have to refer to as my memory is so poor right now. I have indeed been given the big DMO, though in my case “depressive, premenstrual, overweight” on at least three separate occasions when I have complained of these symptoms. I am very nervous of doctors, afraid of confrontation, and over the last few months I have lost so much of my already low self-confidence that I’ve become a virtual recluse.

It is not, for example, uncommon for patients to believe they are being poisoned by their partner, relatives or friends. This is actually within the bounds of reasonable thinking in that for no accountable reason – and in spite of all medical attention – the patient is becoming more and more ill and additionally her food tastes ‘strange’, it’s not that crazy to imagine that food has been tampered with in some adverse way. […]

This had never crossed my mind before, but when I was very ill before failsafe, I knew it had something to do with food but I didn’t know what, and everything I ate seemed to make me ill almost instantaneously. I can see how a hypothyroid person who spots a food intolerance connection could well come to the conclusion that they are being poisoned! In fact, I know of (a relative of a relative), a middle-aged, overweight woman who went mad a couple of years ago and started accusing her poor innocent husband of poisoning her. I wonder!

Intolerance to all things great and small is a characteristic feature of hypothyroidism […] and arises from the inability of the hypothyroid patient to modulate, modify, control or buffer physiological response to an array of physical and psychological phenomena. […]

This all leads to a curious intolerance of (mainly) people where patients get cross if somebody touches them in a nonsexual way or even comes into the room when they are watching television or – which is sad – grandchildren become a bit of a nuisance…

That sounds like autism to me. Something I have discovered is a feature of hypothyroidism, is low dopamine levels, indeed, dopamine is so low that it tends to cause hyperprolactinaemia, a feature it shares with celiac disease. Is it possible that my asperger’s syndrome is induced by chronically low thyroid function from birth onwards?

Doctor Skinner does mention food intolerance.

[T]he patient is usually deemed to have irritable bowel syndrome (IBS) and indeed has this as the problem except that it will go away on thyroid replacement. The other explanation, which is frequently offered by the patient herself, is ‘food intolerance’ is often to a bewildering array of foods including water in several patients which is usually attributed to bad things in modern water. I believe the ‘intolerance’ is essentially intestinal sluggishness with bloating of the stomach and constipation followed by fermentation with further abdominal distention and sometimes diarrhoea. The problem is compounded by less efficient absorption and inefficient detoxification of intermediate metabolites by the liver.

Eureka! I would like to clue up Doctor Skinner to the failsafe diet to expand his understanding of food intolerance in hypothyroidism, fibromyalgia, and that funny old syndrome ‘multiple chemical sensitivity’.

This is as far as I’ve read. I recommend anyone who suspects hypothyroidism to get a copy of this book.

Written by alienrobotgirl

29 May, 2009 at 1:17 am

Posted in Thyroid

A bitter pill

with 2 comments

Today has been something of an angry, brain-foggy day.

Dr Barnes found that low body temperature inhibits the ability of these patients’ bone marrow to produce both red and white blood cells properly. Red blood cells are responsible for transporting oxygen to the rest of the body for food metabolism, energy, and heat. Red blood cell disturbances lead to lower metabolic activity and still lower temperatures. Ability of the marrow to produce white blood cells – soldiers of the immune system army – is reduced, too, making hypothyroids vulnerable to repeated colds, flu, sinusitis, sore thrat, pneumonia, and other respiratory ailments. – Langer & Scheer, Solved: the Riddle of Illness

What interests me about this is that in a vague sort of sense I do have “anaemia”. I’m short on or have deformed red blood cells, and therefore short on oxygen.

Some years ago my parents saw a talk by Dr Leslie O Simpson, a New Zealand biologist who had been studying the blood cells of people with fibromyalgia. He had found that red blood cells did not form properly, and were all kinds of funny shapes. Instead of the normal dimple-shaped disc, some were round, spherical, cornflake shaped, and some were just mashed-up looking. The reason this hadn’t been noticed before, was that as soon as haematologists took steps to preserve the blood, the blood cells all popped back into shape. Dr Simpson was looking for people to take part in his study, and he studied my parents’ blood and found that theirs too had the characteristic misformed shapes. Unfortunately his findings were never followed up.

Chris sent me a link that contained a link to a paper identifying quercetin as having antithyroid effects. Yeah, I’m not surprised. I was taking it when I came down with that awful bout of bronchitis that I think turned into subacute thyroiditis. When your thyroid isn’t working properly, it makes you very vulnerable to infections. I bet I wouldn’t have got sick if it wasn’t for those stupid vitamins.

Now to something I’m not sure I wanted to know.

The most serious complication from oral contraceptives has been a seven to tenfold increase in morbidity and mortality due to thromboembolic diseases reported in Great Britain…

Since these changes are characteristic of abnormalities found in thyroid deficiencies… it would appear that a careful scrutiny of thyroid function should be made in all cases before initiating the Pill. The Basal Temperature has been found to be the most satisfactory test. If a woman has any symptoms of thyroid deficiency and/or a subnormal Basal Temperature, adequate thyroid therapy is maintained as long as she is taking the Pill.

In my large general practice, no cases of thrombophlebitis has occurred, and few patients have complained of water retention. Thyroid is an excellent diuretic in hypothyroidism. A few cases have been seen in which thrombophlebitis developed under administration of the Pill from other physicians.

In each instance, evidence of thyroid deficiency was present before the contraceptive was started. Thyroid prophylaxis for thromboses in those taking the Pill seems to be as effective as it is for the prevention of coronary disease. – Langer & Scheer, Solved: the Riddle of Illness

Nearly seven years ago I had a serious full-leg deep vein thrombosis that could have killed me, as a result of being put on the third generation pill combined with a mild genetic thrombophilia. Having researched the likelihood of this combination causing a DVT, I’ve always felt there must have been other factors involved. Some of those factors must have been inborn, as my younger sister developed a DVT in exactly the same way at exactly the same age, five years after me. I’m certain my sister has thyroid issues too, as we have many health problems in common. So now I understand the thyroid connection.

If I had been diagnosed with subclinical hypothyroidism twenty years ago, this never would have happened to me, or to my little sister. This is a bitter pill indeed.

Six months after the DVT I went back to the same doctor to complain that I had gained a stone in less than three months, that I was tired, weak, short of breath, cold, that I had brain fog, that I was having severe, exaggerated symptoms of PMS, and that I was having reactive hypoglycaemia that was seriously impairing my ability to work.

She sent me away with a useless test for fasting blood sugar, telling me that if I had a hormonal problem I would have to “grin and bear it because the cure is the Pill and you can’t take that”, if I had fibromyalgia, there was “nothing a doctor could do,” and that if I had a weight problem, “you need to diet and exercise more, and you would be useless on Atkins.” Then she gave me a steriod cream for the eczema that had suddenly appeared on my face, which proceeded to make my eczema a whole lot worse.

I don’t blame that doctor in particular. Likely any other doctor would have said the same thing. Ignorance breeds contempt.

Written by alienrobotgirl

28 May, 2009 at 1:19 am

Posted in Thyroid

Fibromyalgia invented six years after the TSH test

with 4 comments

This evening I was sweating and I discovered my body temperature had risen to 37.1°C (98.78°F) for the first time since records began! How funny. My body is so used to being cold, that when I hit a normal temperature I start to sweat. Alas, it was not to last, and soon fell back to its night time average of 36.3°C. My basal body temperature is still a fraction of a degree below the minimum normal range and appears to have stabilised there.

Apart from that, tired and foggy, and fell asleep for an hour on the sofa after taking the dog for a walk. I hate the foggy feeling. It really feels like part of your brain has gone to sleep and can’t wake up, everything is as slow as treacle, and you swim through life like a trout on a murky river bed. I don’t know how to describe this to someone who has never experienced it. Have you ever felt groggy during a really bad hangover? That’s how it feels. I don’t think doctors quite understand how devastating it can be to experience brain fog every day of your life for years and years. When thyroid patients talk about poor diagnosis and treatment taking away their lives, they aren’t joking. There’s nothing I can do to fix this feeling at the moment.

The neuropathic pain in my leg has returned en force today. I’ve been thinking about my upper back pain too, which is very easily provoked by food chemicals, and also by magnesium. I think something similar is happening in my back, with fluids building up and pressing on the nerves there. I’ve never been able to explain the back pain to myself, but I thought it must have something complex to do with pain signalling.

This has also made me wonder about fibromyalgia. For the last year or so, I’ve seen the occasional reemergence of the nasty, random hypersensitive skin patches typical of fibromyalgia. It has probably been going on for as long as the hitherto unnamed carpal tunnel syndrome symptoms. The sensitive skin patches usually occur on my outer arms. I wonder if it is possible that they are also caused by fluid build up pressing on nerves?

At teatime, I actually managed to become irritated by the barking dog, the blaring radio, and my partner clattering crockery. Everything was too loud. This is the first time I’ve experienced irritability in weeks, and I sustained irritation for a good couple of minutes. Not sure if that’s a positive thing. I rather took my anger-ectomy as a blessing, as in recent years I’ve experienced far too much irritability.

I’m forgetful, so if I meander or repeat myself, apologies in advance. I can’t actually play kakuro at the moment because I can’t keep enough numbers in my head. I haven’t been able to work on either my writing or on my computer programming for several weeks. I am so glad my partner is here to support me, or I would be destitute.

Hypothyroid patients generally have high cholesterol levels. Mine is somewhere between 6.5-7.8mmol/l (250-300mg/dl). My mum has high cholesterol levels, and has been prescribed eeevil statins for them. I don’t think the doc ever checked her thyroid status. I took a test last summer when I learned my mum had high cholesterol. It was equally as high back then. Did you know hypothyroid patients were at a much higher risk of heart disease? Why blame cholesterol when there is such an obvious correlation with hypothyroidism?

Apparently hypothyroid patients tend to have high levels of homocysteine, indicative of impaired methylation. They also tend to be low on B12, possibly due to the poor function of intrinsic factor, which is designed to absorb B12 from the gut. This explains a lot.

I read an interesting article by Dr David Derry, a retired Canadian thyroid doctor, regarding the uselessness of the TSH test. It contains a devastating quote:

Why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal they have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions.

Before doctors started to use the TSH test, they relied on patient symptoms of hypothyroidism to diagnose and treat the disease. Now they rely on a test that doesn’t correlate with patient’s symptom intensity. I am becoming quite firmly convinced that fibromyalgia and chronic fatigue syndrome are undiagnosed hypothyroidism, created by the gap between symptom reality and second-rate endocrinology.

Really, this is as bad as the “treatment” of diabetes with a low fat, high carbohydrate diet.

Why is endocrinology such a poorly understood area of medicine? Are endocrinologists stupid?

Written by alienrobotgirl

27 May, 2009 at 1:17 am

Posted in Thyroid

What is a normal thyroid hormone level?

with 2 comments

Primary Hypothyroidism

The pituitary gland produces a hormone called thyroid stimulating hormone (TSH). The pituitary gland regulates the production of TSH, something we’ll look at in more detail in a minute.

TSH is designed to stimulate the thyroid into producing T4, also known as thyroxine. Different people produce different amounts of TSH, and depending on where in the world you live, you may be defined as hypothyroid in one country and euthyroid (normal thyroid) in another country, based on the arbitrary “normal” reference range.

When the thyroid does not produce enough T4, your TSH level rises to try to stimulate your thyroid into making up the short fall. This means that a high TSH value is indicative of primary hypothyroidism. If the thyroid is not making enough T4 in response to TSH, this means with certainty that the thyroid itself is damaged in some way.

In the UK, the “normal” range for TSH is considered to be between 0.5 and 5. In the US, this was the case, however, doctors revised the normal range down to be 0.3-3. Unfortunately there has been much dithering over this in the US, and many labs are still using the old reference range, resulting in a treatment lottery.

TSH levels vary throughout the day by as much as 2-3 points. They are roughly the same at 6AM and 6PM, lowest at noon, and rise in the evening to be highest at midnight. Google books reference (pdf). Sleep inhibits TSH production, so your TSH levels fall throughout the night. Sleep deprivation prevents this inhibition and leaves TSH levels high.

I’m not able to find a decent page explaining whether the menstrual cycle affects TSH output in humans, most say there is very little difference. In rats, TSH is high at the start of the menstrual cycle and falls low towards the end. There are slight hints of a similar, very small variation in human women, but nothing substantial.

The controversy over TSH is that doctors have a tendency to regard it as the gold-standard for thyroid testing and may not even test actual T4 and T3 levels. There is also the assumption that if TSH falls within the normal range, that the thyroid function is normal. This is not true. Many patients with primary hypothyroidism complain of continuing hypothyroid symptoms when their TSH has reached the normal range, and may not recover fully until TSH levels have fallen relatively low. There seems to be little treatment standard regarding this, though I have found in several places recommendations that doctors who are tailoring their patient’s thyroxine dosage should shoot for a TSH of around 1, and many patient advocacy groups say that hypothyroid patients feel best when their TSH is below 1. There are also many instances of patients with TSH in the normal range having significant hypothyroid symptoms that resolve with thyroxine treatment.

Welcome to the murky world of the clinical presentation versus the laboratory test. Thyroid Australia have a number of quotes and links regarding this.

Individuals appear to have their own unique “set point” requirement for T4 levels. One can test in the “normal” range, but actually have a clinical presentation of hypothyroidism because one is below one’s own particular set point. My own T4 levels are scraping the bottom of the “normal” range. Technically I am regarded as having “subclinical hypothyroidism” because my T4 is still “normal”, but I have a clinical presentation of carpal tunnel syndrome, eczema, weight gain problems, massive food intolerances, mood disturbance, and a basal body temperature of 35.5°C. Obviously my own “set point” for T4 should be a lot higher than it is.

High individuality causes laboratory reference ranges to be insensitive to changes in test results that are significant for the individual. Narrow Individual Variations in Serum T4 and T3 in Normal Subjects: A Clue to the Understanding of Subclinical Thyroid Disease.

Usually, but not always, when a person’s own unique “set point” is breached, TSH rises. But it doesn’t always.

Secondary Hypothyroidism

Back to the pituitary gland. Sometimes the pituitary gland gets damaged. When this happens, it may not produce enough TSH to stimulate the thyroid into making enough T4. Though many endocrinologists regard this as relatively less common compared to primary hypothyroidism, in recent years a number of specialists have made a connection with fibromyalgia and chronic fatigue syndrome.

Because the pituitary gland is not making enough TSH, the TSH levels may appear “normal” or low. The T4 levels may also appear to be “normal” or low. Whatever the case, the person’s own unique “set point” for thyroid hormone production has been breached, and as a result they are experiencing the clinical symptoms of hypothyroidism.

As you can see secondary subclinical hypothyroidism can, under some circumstances, be impossible to spot with a laboratory test. All one has to rely on is the clinical presentation of the patient. Hence, patients may be written off as having “fibromyalgia”, “ME”, or “Chronic Fatigue Syndrome”, when in fact they have secondary subclinical hypothyroidism.

There are a number of private specialists in the UK and around the rest of the world who are willing to treat patients based on their symptoms of hypothyroidism rather than a laboratory test. As a result, they have faced strict sanctions and in some cases have been suspended or struck off. However, the patient advocacy forums I have found are buzzing with people who were formerly diagnosed as having fibromyalgia, who have now recovered after being prescribed thyroxine. This is actually quite a shocking situation.

The pituitary gland is the organ that regulates metabolism during a diet. Apparently in animals, there is a very strong TSH level fluctuation during fasting, however, in humans, this metabolic variation is quite small. Nonetheless, the pituitary gland will lower TSH output in response to a strenuous, long-term diet or fast, thereby reducing metabolism by reducing T4 levels. This usually corrects again once a normal amount of calories is eaten.

The probable reason that this metabolic response is limited in humans, is that the brain requires thyroid hormone. Though most of the tissues in the body are able to adapt to lower thyroid hormone levels, the brain cannot, and responds by stimulating the pituitary gland to make more TSH. Humans have particularly large brains with a high energy consumption. Twenty percent of our caloric intake is burned by the brain. It makes sense, therefore, that people with subclinical hypothyroidism experience mental symptoms long before they experience physical ones: the body can adapt to some extent, but the brain cannot. Hence, brain fog, attention deficit disorder, memory problems and mood swings are the early warning signs of hypothyroidism, but are rarely ever diagnosed as such because they may be caused by relatively mild thyroid hormone deficiencies.

Tertiary Hypothyroidism

What makes the pituitary gland release TSH? Another hormone, secreted by the hypothalamus, called thyrotropin-releasing hormone, or TRH.

Tertiary hypothyroidism is relatively rare. If the hypothalamus is damaged, it will not release enough TRH, thereby failing to stimulate the pituitary gland to produce enough TSH, thereby failing to stimulate the thyroid into producing enough T4.

It may actually be possible to measure secondary subclinical hypothyroidism with a TRH challenge test. By giving TRH, one should get a relatively predictable response from the pituitary gland, which should release a “normal range” of TSH. If the patient’s output of TSH is blunted, this is indicative of secondary subclinical hypothyroidism.

Thyroid Hormone Resistance and T4 to T3 Conversion

These are controversial topics. Doctors say that resistance to thyroid hormone is quite rare, however, on a subtle level it is not. There are many genetic polymorphisms to thyroid hormone receptors. There is some limited evidence that people with red hair (MC1R and POMC) may have slightly different behaviour of the hypothalamic-pituitary-thyroid axis than other genotypes due to crossovers between this system and the melanocortin system. This however, should be seen as part of a bigger picture of genetic diversity, all of which contributes to an individual’s unique “set point” for thyroid hormones.

There is also a lot of anecdotal evidence from patients who do not respond well to synthetic T4 treatment that they may also require supplementary T3. Most of the conversion of T4 to T3 occurs in the liver, kidneys, and in peripheral tissues all over the body, however the thyroid gland does put out about 20% of T3 itself, which it would not be able to if it is damaged or impaired. There may also be genetic reasons that this conversion is impaired in some people, who do better on Armour thyroid or other natural thyroid extracts that contain T3 than they do on synthetic T4 preparations like levothyroxine. This is thought to be particularly true in cases of long-standing hypothyroidism.

Where do you go from here?

If you have hypothyroid symptoms but your doctor tells you that your test results are normal, ask for a copy of your test results yourself. If they appear borderline to you, you may wish to pursue the thyroid theory. You may also wish to monitor your basal body temperature in the morning and ensure that it is in range, bearing in mind that it fluctuates with your menstrual cycle. This is not necessarily indicative: my basal body temperature has been at the low end of the normal range for years. Monitor your weight too. Calculate the right number of calories for your metabolism. If you are prone to easy weight gain and bloat despite caloric control, you should consider hypothyroidism.

If you can’t get your doctor to treat you based on your clinical symptoms, Mary Shoman has a very good list of recommended doctors from around the world who are willing to listen to patients first and foremost above the results of laboratory tests.

Written by alienrobotgirl

26 May, 2009 at 1:01 am

Posted in Thyroid

The thyroid and bipolar disorder

with 4 comments

Isn’t it nice to have some good weather here in the UK, at last?

I went to see the folks yesterday. I spent an hour stuck in a jam on the duel carriageway coming out of Chesterfield after someone had a car accident. I pulled my car half way up onto the central reservation so that ambulances and fire engines could zoom past. I’m really glad I didn’t take the dog. An hour in a hot car with a hyperactive Cocker spaniel climbing the walls would not have been fun!

I gave my folks a thyroid questionnaire to fill in. My sister’s looks like mine would have about five years ago. I have no idea whether it will help them or not, but if there’s a chance it will, it’s worth pursuing for a while.

I was incredibly groggy yesterday and actually worried about driving. I felt strong though. Today I woke up clear headed, feeling weak with that annoying pounding heart beat symptom again. It’s only beating at around sixty bpm (normal for me is 90bpm), but I can feel every beat. I was like this last month and I think the menopause-strength PMS symptoms are coming on again. Can I please just cancel my menstrual cycle this month? I’d much rather keep it in the bank right now.

I’ve dug up some interesting information regarding thyroid problems and bipolar disorder. This website is written by a qualified psychiatrist who works within the hospital system in the US, and who specialises in the care and treatment of bipolar patients. He has also written a paper regarding treating bipolar disorder with apparently normal thyroid readings with thyroid medication. Thyroxine acts as a mood stabiliser. This makes sense to me, as if it stimulates enzyme activity in your brain, your brain will better be able to balance your neurotransmitters. Even more on this.

I read somewhere (I forget where I’m afraid), that about 25% of psychiatric patients have a thyroid disorder. I had a schizophrenic friend on my writing course ten years ago, and SHE had a thyroid disorder too, I think it may have been autoimmune but I can’t remember. She was a vegetarian with clinically low B12, and many autoimmune thyroid patients are low on B12, though I’m not sure whether the chicken came before the egg. Being low on iron is also a risk factor. More on this. I have strange reactions to B12 myself. Small doses make me feel better, but make me irritable. Large doses make me furious and give me a trapped nerve sensation in my neck.

I’ve been quite stable today, but yesterday I had a very mood-swingy day. It’s weird, because on one level I’m quite calm. I can’t seem to get agitated. Yet on another level, insignificant things provoke reactions in me. For example, something on the television or the radio might provoke me to well up, or to start giggling and feeling euphoric. I think I could be cackling mad for a couple of months until I get enough thyroxine. There’s not much I can do about it so I may as well go with it I guess!

Something else I’ve discovered is that the strange tingling sensations in my fingers, and the tugging sensations in my wrists are caused by carpal tunnel syndrome! Yet another complication of hypothyroidism. I thought it was a circulation problem, but apparently patients often think this. These symptoms are caused by fluid build up in the tissues pressing on the nerves in the wrists.

OMG, WTF! After a moment of devastating insight, I think this may be the cause of my leg pain too! The wrist tugging/finger tingling and the DVT leg pain always occur together, at night, when carpal tunnel syndrome symptoms normally appear. I’ve been really puzzled by the fact that the leg pain goes away again in the day. I think this is caused by the existing damage to my DVT leg, which has a tendency to swell with fluid due to the venous “locks” in my leg being damaged by the blood clot. I’ve been getting enough fluid build up in my leg tissues to press on the nerves in my leg and cause leg-carpal-tunnel-syndrome!

I think I can go back to the doctor now feeling vindicated that I’m not a hypochondriac! Gimme more thyroxine, quick!

Written by alienrobotgirl

25 May, 2009 at 1:04 am

Posted in Thyroid