Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

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

11 Responses

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  1. Hi Scott,

    Well, first off, don’t give up hope of finding someone who can help yet. There are lots of doctors out there who are willing to work with patients who have hypothyroid symptoms but “normal” blood levels.

    Mary Shomon has a really good list of thyroid doctors on her site. It’s also worth asking around on the patient advocacy sites and the thyroid yahoo groups for recommendations. In addition, I believe the guy who wrote the pages into the connection between bipolar disorder and hypothyroidism is still in practice.

    I would be more cautious about using a T3 prep than I would be a T4 prep. T3 is the active hormone, so you are more likely to experience adverse effects from taking too much. T4 has to be converted to T3 in the peripheral tissues, and the body is better at regulating how much it needs (conversion problems not withstanding).

    alienrobotgirl

    31 May, 2009 at 11:43 pm

  2. lol. Thanks! What can I say? I spend waay too much time on the interwebs!

    alienrobotgirl

    31 May, 2009 at 11:45 pm

  3. In a number of studies, I’ve found that the use of triodothyronine as an augmenting agent has had a statistically significant and positive impact on subjects with treatment resistant major depression and bipolar depression. However, convincing a psychiatrist to consider an understudied (and controversial) approach might be too significant of a hurdle. For the sake of sparing myself of future suffering (even if it’s only mild), I’m thinking about ordering some Cytomel from an online pharmacy. But, because of different statutes (relative to other countries) in the United States, and since I don’t have prescription, I would be breaking a law that is somewhat warranted in my opinion.

    After suffering from depression and assorted conditions for years, there is a compelling urgency within me. An urgency to seek complete and total recovery with all possible speed. With each misstep this urgency has grown, and unfortunately, has become all consuming. But, even I choose an illegal means of treatment, I probably won’t be able to treat myself in this manner forever. Sooner or later I will have to answer some uncomfortable questions. And, although my actions might be understandable to some, this infraction might jeopardize my security clearance. Of course, this assumes that my actions are noticed by someone in a position of authority.

    So, like most people with abnormalities in thyroid levels, and other comorbid disorders, I face a dilemma. I’m somewhat inclined to take some security precautions and treat myself, because I doubt I will have the patience to doctor shop over the coming months, or deal with an overly cautious physician. But, if I choose to use legal means for my treatment, I should probably move quickly, because with the looming changes in the provision of health care in the United States, and because of the implications of this change, I feel like my window of opportunity is rapidly closing (this statement isn’t meant to be polemical).

    beroul82

    31 May, 2009 at 11:06 pm

  4. Excellent summary. I’m amazed at how quickly and completely you put this all together. It took me about two years (seemed like five) to learn essentially the same info.

    goingagainstthegrain

    31 May, 2009 at 11:33 pm

  5. Here is a study that examined the comparative effects of Lithium and triodothyronine.

    http://www.ncbi.nlm.nih.gov/pubmed/16946176?ordinalpos=143&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    And, the effect that triodothyronine has on brain bioenergetic metabolism:

    http://www.ncbi.nlm.nih.gov/pubmed/16946176?ordinalpos=143&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    As an added note, two of the authors of both studies, Maurizio Fava (Massachusetts General Hospital and Harvard) and Andrew Nierenberg (Harvard), are quite renowned in the field of psychopharmacology. Combined, both men have contributed to over 400 journal articles.

    beroul82

    31 May, 2009 at 11:53 pm

  6. Thanks. I’m aware of the list of thyroid doctors, but what gives me some pause is the number of quacks that masquerade as professionals. Because of their susceptibility, the sick can sometimes make gods out of quacks.

    So, although patient reviews are somewhat helpful, it’s difficult for me to abandon my skepticism. To be sure, there seem to be some excellent physicians on Shoman’s list. It’s just that I’ve had too many encounters where the physician failed to live up to the praise of former patients.

    Like I said, I’m still considering visiting a physician, but this time, my standards have to be higher. An impeccable background and published work on the subject are the most highly desired among other qualities. I’m tempted to arrange a consultation, and make a trip out of state to see someone like Fava or Nierenberg, whom might also be able to refer me to an internist or endocrinologist that meets my standards. But, I fear it might take more than the allotted time to go over my case history.

    As for the use of Cytomel, I would be very reluctant to exceed the doses administered to subjects of previous studies. At this time, I’m too obsessed with longevity and the quality of life.

    beroul82

    1 June, 2009 at 12:35 am

  7. I just want to stress that I would be very cautious about trying T3 without having already tried T4. I don’t think T3 should be tried without supervision, it is a lot more potent than T4. T4 usually has the desired effect. T3 should be reserved for use by people who do not respond to T4.

    alienrobotgirl

    3 June, 2009 at 4:51 pm

  8. Thanks for the concern.

    Well, actually, I no longer have any intention of seeking self-treatment. When I made my previous comment, I was in a mild manic state, so my judgment was somewhat impaired.

    I’m cognizant of the potential dangers of triodothyronine, and as I said before, I would never undertake any action that might endanger my life. Even in mild states of mania, I always come to my senses when dealing with actions that might have a long term impact on my health. I suppose I’m lucky in that regard.

    Based on previous blood lab work, and because I suspect the conversion of T4 to T3 hormones is impaired, I still have a preference for Cytomel. But, should my request for Cytomel be granted, I will only agree to begin with a small dosage, no more than 50mg. And, to ensure my safety, I will also request close monitoring, which the prescribing physician will doubtlessly demand anyway. However, I’m also amenable to using other thyroid medications.

    As it happens, I’ve discovered a few suitable internists specializing in treating conditions that are of some concern. And, since I’m feeling well enough to satisfactorily fulfill most of my daily responsibilities, I see no reason to take drastic actions. I just need to find a way to sustain an equilibrium in my moods. And with my recent adjustment in my medication (as of today), I feel like I’m closer to that equilibrium.

    Again, thanks for your concern. I’m eager to hear more about your progress.

    beroul82

    3 June, 2009 at 6:57 pm

  9. I’ve made the same mistake with mg and mcg myself when advising someone before. lol.

    alienrobotgirl

    3 June, 2009 at 9:21 pm

  10. Of course, I meant to write 50 mcg, which is not necessarily a small dosage, but rather, a sensible dosage. But, come to think of it, 25 mcg might be preferred.

    beroul82

    3 June, 2009 at 8:35 pm

  11. Wow, even 25 mcg T3 seems like a lot to me. I take only 5 mcg T3, but then again my T4 dose is only 50 or 100 mcg T4 daily (long half life, prefer dye-free 50 mcg T4 (Levoxyl) tablets, so I have a schedule for taking 1 or 2 tablets daily to equal 10-12 tabs weekly depending on season).

    I with the tiny Cytomel tabs were easier to spit, so I could take my dose in morning and afternoon to adjust for the short half-life, because 3pm-6pm is a s-l-o-w tough time of the day for me, until my second wind kicks in a bit after supper.

    Beroul82 is so right about the doc lists; it’s still necessary to check docs out and chose carefully. Might still take trying several docs; lucky strikes are exceptional. And I don’t mean finding one that will obey the patient’s every order, but rather finding one that can work as a team and welcomes the patient’s input. But the lists are still a more targeted aim than the crapshoot choosing a cookie-cutter doc in an HMO network directory or by random system assignment.

    I just had an appt with an out-of-network (out-of-pocket) doctor who is certified in family medicine but takes a holistic approach to health care/prevention and is well versed with bioidentical hormone balancing. Wow! What breath of fresh air. First consult – a relaxed 1.5 hours with an in-depth history and great questions about all areas of my life – diet, habits, past and current health issues, social and relationship support network, etc! New Patient health form I had to fill out and bring to first appt was 11 pages long and took over two hours to complete! I am encouraged!

    For the most part, we had similar views on the important stuff and the differences were minor. After my lab results come back (this time *with* test results for thyroid antibodies and reverse T3 tests!), we’ll talk again about a trial on Armour or a compounded natural thyroid extract so I can see how that feels compared to the T4/T3.

    I was sent home with a new binder with my paperwork, articles, supplement recommendations though I already take nearly the same ones (without a sales pitch, too, though I saw products for sale), and a suggested reading list. I was thrilled to see her recommended reading list was nearly the same as my library of books, including the one we’re using to try to regress the plaque accumulation detected in my husband’s coronary arteries last winter. I’m having my husband see her next week, too. This doctor was recommended to me by the manager of the vitamin/supplement dept of a nearby store, a woman whose opinion I’ve grown to trust in general, perhaps even more now. I’d been thinking about trying her out after my last endo visit in April, and esp when I realized she might be better than the statin-pushing GP my husband goes to.

    And this doctor’s practice wasn’t like the other one I considered whose website initially seemed similar in focus, but whose receptionist spent most of the my initial phone call promoting “aesthetic medicine” like face peels and wrinkle-filler (might be a great doc, but I don’t want to sit in a waiting room full of with Botox victims nor have it peddled to me – though I know it’s big biz in this part of the world). Living in coastal San Diego, there are a LOT of independent docs who are waaaaay out from the mainstream, many are a lot farther out than I’m ready to swim. It has to be the right fit and it’s worth the search.

    So even if the next doc visit doesn’t go well, keep at it as long as you need to to find the right doc. I know that’s inefficient, but the system works against those of us who don’t leave everything up to the docs, with hypothyroid issues in particular. If you think you’re having it bad, consider that hypothyroid men have to deal with too many docs who see the condition as a “fat, frumpy, depressed middle-aged woman’s complaint”.

    goingagainstthegrain

    4 June, 2009 at 5:22 am


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