Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

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!

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Written by alienrobotgirl

29 May, 2009 at 10:41 pm

Posted in Thyroid

17 Responses

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  1. For me, the psychotic symptoms have always been very rare and mild. Nothing worse than seeing objects in the corner of my eyes. In all likelihood, there is less of a convergence in symptoms because of the difference in the level of progression.

    Although it’s possible that most of your symptoms will subside once you’re prescribed a larger dosage of thyroxine, I don’t think it would hurt to try some sort of augmenting agent. I’m not suggesting that you try anti-psychotics, because the last thing you need is dopamine antagonist. Rather, you need something that increases the availability of GABA and limits the release of glutamate. If you’re not inclined to visit a psychiatrist, Theanine or Picamilon might be safe alternatives.

    It’s not my intention to simplify the cause of your problems. Again, I think it’s quite possible that your symptoms are linked to a thyroid disorder. But, you need something else to help you through this.

    Anyway, I wish you the best of luck.

    beroul82

    30 May, 2009 at 3:14 am

  2. “It is common for patients to imagine insects or other creatures most usually cats, spiders, beetles, flies or even snakes running around the floor”

    I was floored by this comment. Back in my vegetarian days, I used to hallucinate cats all the time– a dark, catlike motion in my peripheral vision. The first couple of times it happened at work (at a restaurant) I was concerned enough to go looking for the cat, but soon deduced it was all in my head. I haven’t experienced that for a few years now, and I’ve taken that for a sign I’m doing better. Never thought it might be thyroid-related.

    methylethyl

    30 May, 2009 at 6:12 pm

  3. That’s really interesting (the connection between hallucinations and thyroid function). It makes sense – deficient/abnormal energy metabolism in brain cells could contribute to abnormal neurological function, so psychosis can result. Interesting. A lot of research suggests some mental illnesses relate to brain hypometabolism.

    I’m wondering though if in your friends case if the goiter was a delusion. I find it hard to believe a team of doctors could fail to investigate such an obvious cause of psychosis. Somatic delusions do occur in psychosis. I have been seeing a doctor for my moods and one of the first things she did was make me get a TSH check. I would assume if anyone had hypo(or hyper)thyroidism enough to have goiter/psychosis, there would be other symptoms too to point that way.

    itsthewooo

    30 May, 2009 at 6:24 pm

  4. Hi….just wanted to chime in to let you know that at least one person (me) not only reads your blog (you’ve got lots of readers, as you well know!)….but also greatly appreciates and learns from the content you post. Thank you. :-)

    Regarding hypothyroid treatment, did your doctor discuss a Thyroxine alternative….something along the lines of Armour…..that would contain a combo of T3/T4 instead of just T4?

    One more question….what’s your experience / opinion on the inclusion of coconut based products (oil, milk, cream) in one’s daily nutrition plan?

    CHEERS!

    D

    lovehealthsuccess

    30 May, 2009 at 9:01 pm

  5. Hi Scott

    All of the hallucination symptoms – which were very mild, just rare dots in my vision – have gone. I haven’t had any visual or auditory disturbance since I started the thyroxine. Apparently it is one of the first symptoms to clear up, and it has done. My emotional symptoms are now much lessened too, and I am in a stable, positive mood for 95% of the time.

    alienrobotgirl

    30 May, 2009 at 10:30 pm

  6. I’m amazed by the number of food intolerant type people who have suddenly raised possible thyroid issues with me!

    alienrobotgirl

    30 May, 2009 at 10:31 pm

  7. Hi Woo,

    The goiter was absolutely real! My friend and I met on a writing course. She had published an autobiographical book on her experience of schizophrenia. She goes through periods of relapse and periods of complete recovery. She was one of those “sane” (lol) schizophrenics who remains rational throughout, despite hallucinating. The goiter was eventually looked into, along with an actual B12 deficiency, but not until she had been in hospital for several months. She didn’t write about the outcome of this in her book, but she was in fact released from hospital perhaps three or four months after those two things were investigated. I have the impression that they may have been treated and this affected her recovery, because the antipsychotics she was on certainly didn’t, despite being on toxic doses.

    She herself was quite a radical left-wing activist, who refused to see any biological basis to her problems, and believed they all stemmed from childhood experiences (of which she certainly had plenty, including being a product of incest). She put her cure down to talking therapy. I think this may have clouded her judgement when it came to making the association. Far be it from me to suggest she may have had something like a series of Hashimoto’s attacks, or that her schizophrenia appeared, unusually, in middle age, two years after she went vegetarian. There are probably genetic factors involved to, due to her father and grandfather being the same individual.

    Don’t be amazed! It may be obvious to you and I, but this is how a lot of doctors work. They don’t seem to have a holistic view of things or a sense of joined up thinking.

    alienrobotgirl

    30 May, 2009 at 10:45 pm

  8. Thank you :)

    Unfortunately here in the UK, the General Medical Council (the equivalent of the FDA), have, in their “wisdom”, removed natural thyroid products from the permitted drugs list in favour of synthetic products. This does not mean a doctor can’t prescribe them, but they are really not de rigueur. I plan to go to see a specialist private doctor who will prescribe Armour as part of my recovery plan (if, fingers crossed, I can get my family doc to give me a referral).

    I have also bought some off the internet from an online pharmacy, since it is perfectly legal to do so in the UK!

    alienrobotgirl

    30 May, 2009 at 10:50 pm

  9. Thanks, this was an interesting read.

    You surprised me again by finding yet more symptoms that I have, but never would have thought to be related to my problems.

    For several times I have thought that the water filter is broken just to find out that the strange taste is also in the bottled water…
    And also the descriptions about hearing and vision problems were very familiar-sounding.

    One thing is curious though. I got my thyroid results, and I am not hypothyroid. Serum TSH was 1.6, T4 was 17.7.

    So, I must search the season for my almost identical symptoms from somewhere else.

    misukisu

    2 June, 2009 at 12:19 pm

  10. Hi Misukisu,

    Did you read my post on what is a normal thyroid hormone level? Many people attest to having hypothyroidism with allegedly “normal” lab results, especially those with secondary hypothyroidism, caused by a deficiency in TSH due to low pituitary output.

    To put you in perspective, your free T4 level is LOWER than mine!

    alienrobotgirl

    2 June, 2009 at 7:54 pm

  11. Yes, I have read that post, but I did not notice if it contained the reference range for T4. The excerpts on Skinner’s pages mention levels clearly lower than mine, so I thought that I do not qualify into that categoria.

    I checked from the local (Finnish) hospital lab page and there the reference range for serum T4 is 9 – 19 pmol/l. What my doctor said, was that 10-23 would be normal.

    So I thought I was OK, since I still have T4 on the upper half of the scale…

    Other and probably biggest problem in diagnosing myself as hypothyroid is that most of my worst symptoms could also be hyperthyroid/adrenal symptoms: sudden sweating, heart beatings, sleeping problems, anxiety…

    Also, I have measured my blood sugar and found out that the horribly cold feelings in my legs and fingers and overall intolerance to cold was related to very low blood sugar and have now stayed away when I increased carbs and amount of meals.

    So if I am recovering from problems with stress hormone secretion (which is my current diagnosis of my problem), the thyroid medication could stimulate the adrenals even more and cause new burnout.

    Overall, I feel much better and do not have much symptoms anymore. However, I am still losing hair and if I miss several meals I will get symptoms again. I cannot drink any alcohol either, it makes me either stay awake all night or mess me up totally. My stress tolerance is all time low.

    The main difference compared to your symptoms is that mine react to eating. Or to be more exact, react to undereating and/or not eating at all. Somehow in that case my blood sugar starts to fluctuate strangely and the symptoms follow it. And using the same logic, they also react on exercise.

    Maybe I just have a different problem, with amazingly common symptoms?

    misukisu

    3 June, 2009 at 8:30 am

  12. - my worst symptoms could also be hyperthyroid/adrenal symptoms – sudden sweating, heart beatings, sleeping problems, anxiety…

    Like Hashimoto’s disease? Though I also get those symptoms. I am heat intolerant as well as cold intolerant. I am badly affected by dietary amines, which cause me palpitations and sleep problems.

    Hypothyroidism stresses the adrenals. I also have blood sugar problems, they are caused by hypothyroidism stressing the adrenals. Thyroid medication would help the adrenals in this case. Dr S says that most people who come through his door have some symptoms of adrenal fatigue but almost all get better with thyroid medication. Some need a small dose of prednisone to aide their recovery. He has diagnosed actual adrenal insufficiency before, but it is rare.

    Losing hair is a symptom of hypothyroidism.

    My symptoms react to eating and exercise. For a long time I have been unable to diet because I can’t tolerate the symptoms of undereating. This changed a few months back when my hypothyroidism worsened to the point where I lost my appetite.

    alienrobotgirl

    3 June, 2009 at 4:32 pm

  13. Yup, just like in Hashimoto. But as my TSH is low(ish), I probably do not have hashimoto. Reading the stuff you linked here I also got an impression that these type of problems occur only in the beginning of the Hashimoto when the thyroid is still functioning, though struggling under attack and the hormone levels fluctuate wildly.

    I know adrenal insufficiency is not diagnosed often. But bear in mind that you would need to measure both adrenaline and cortisol to find it out and both of those hormones have strong daily cycle and big variability. Also, in order to have these kind of symptoms you need some actions from the adrenals, which means that the real low-hormone state is already over and the adrenals are working again, though in unexpected fashion.

    Hypothyroidism stresses adrenals, yes, but the link goes other way around too! I believe what you say, that one may have thyroid problems with normal lab result. But I also believe that one can have problem in adrenals with normal lab results, too. What currently interests me is to somehow find out which one is the originator of the problems.

    The main symptoms I listed are not in classic hypothyroid symptoms lists. Instead, they are in hyperthyroid symptoms list (and Hashimoto, as an exception). So what we actually have here is a strange mix of both hyper- and hypothyroid symptoms. Based on that I’d assume that the hormone levels are fluctuating.

    The reason why I suspect in my case that the problem would be in adrenals is because my blood sugar readings. Before the acute onset of the adrenal symptoms I had constant low blood sugar (probably starting in the end of the last year). I ate something (low-carb) and my sugar went right down. If I ate carbs, it did the same, not rising at all. But for normal person, when blood sugar goes under 3.5, it should trigger an adrenaline reaction to raise the blood sugar. For me it did not do that, so I kinda must assume that there was something wrong with my stress hormones. I did get a panic attack, if I let the blood sugar fall under 3, so the system was not totally broken (cortisol and GH are the main responsibles in trying to solve the low blood sugar problem if adrenaline fails).

    Then one fine day couple of months ago the adrenaline responses just came back with all the current (hyper-type) symptoms (the hypo-type symptoms I had already before). My blood sugar no longer goes under 4.5 at all and in some weeks it does not go down to fasting levels at all. It shoots up and down as it wants… mostly up, except right after eating, so I have tried to keep myself eating every 3 hours to control the symptoms and it seems to do the trick. Hopefully the stress hormone levels will eventually go down and I can get away from this “pain-in-the-ass” eating system.

    I think (not sure though) that thyroid has no direct role in controlling the adrenal reactions that react to lowering blood sugar. It does affect through metabolic rate and thyroid hormone levels rise during exercise. But I’d assume that hypothyroidism would not be able to prevent the adrenaline reaction that raises blood sugar.

    The high blood sugar makes me think that the main situation in my body is more hyper- than hypo-type. I have read some studies about adaptations in hormone receptors. If levels are lowish too long, the receptors are upregulated, and cause this type of problems when the hormone levels rise again. So normal level response is considered big, because there are too many receptors. Probably goes for both thyroid and adrenals.

    But in my current situation I feel completely unable to say which one originates the problems, the thyroid or the adrenals. Because of the blood sugars in my own case I would bet on adrenals.
    But not depending which it is, I am not at all sure that just replacing some hormone(s) would solve the problem. Why? Because of the strange hypo-hyper-mix. Based on the T4-levels of both of us, the hyper-type of symptoms may be real, caused by the previous receptor upregulation.

    misukisu

    4 June, 2009 at 9:09 am

  14. Hi Misukisu,

    TSH is not an indicator of Hashimoto’s. Hashimoto’s comes and goes as the body attacks itself and recovers in a series of cycles, during which all thyroid hormones fluctuate up and down. Many people with Hashimoto’s complain of symptoms of hypothyroidism and hyperthyroidism even though their thyroid hormones are ostensibly “normal”.

    As I have already said, I have disturbed blood sugar and had none of the really “classic” symptoms of hypothyroidism until I reached my crisis point. This is because my thyroid is fatiguing my adrenals.

    The fluctuations you describe going between hypo and hyper symptoms strongly suggest Hashimoto’s to me. Your adrenals do respond directly to the behaviour of your thyroid, trust me, I have experienced this. Your adrenals have no reason to behave this way all by themselves. There is no corresponding “autoimmune disease of the adrenals” that would cause these sudden fluctuations between high and low. The only other option is cancer.

    I can only suggest to you that you employ Occam’s razor, and that “the simplest explanation is the best” – what looks exactly like Hashimoto’s disease, is more likely to be Hashimoto’s disease than it is to be an obscure, undefined disease of the adrenals.

    I am not here to diagnose your illness, but rather than over-thinking things, the only way you will find out what your problem is, is by going out, finding a knowledgeable doctor, and testing it.

    alienrobotgirl

    4 June, 2009 at 12:36 pm

  15. Thanks ARG,

    You are right in your point in employing the Occam’s razor. I cannot dismiss the possibility of Hashimoto, since it really would be the simplest explanation even though I still have my doubts. I need to get the thyroid antibody test also to be really sure that I do not have it.

    But also, if both the measured thyroid results and antibodies does not match HAIT, then the simplest solution cannot be the right solution. I respect the data, and the data just must match. But let’s see what happens. I already mailed my doctor to get the papers(what do you call them… referrals? probably not) for the lab.

    You wrote: “Hashimoto’s comes and goes as the body attacks itself and recovers in a series of cycles”
    Based on what I have read this far I got this impression that the hyperthyroid phase(s) would not last long before the thyroid would be so damaged that it would show in the lab. While trying to find some patient stories I stumbled on this, another explanation for the reoccurring “hyper-symptoms”: http://www.thyroid-info.com/articles/mitral-valve-prolapse.htm
    I also found some mentions about “dysautonomia”, that also has similar symptoms.

    Few points I still want to correct from the previous post.
    I am not suspecting any “autoimmune disease of the adrenals”, but more of a temporary layoff (considering adrenal medulla and cortex separately), a probably fully recoverable situation.

    You wrote: “Your adrenals have no reason to behave this way all by themselves”, and I am not suggesting they would have no reason. I have been following a low carb diet for 6 years now. That does put a pressure to the body to keep blood sugar constant without the help of the liver glycogen. Add there some problems in insulin secretion (causing it to be too big compared to what is digested) and you got quite a pressure for the adrenal medulla. If, for any reason, noradrenaline response would not work for some time, that would create a situation where the mechanism raising the blood sugar would have no means to affect insulin secretion (noradrenaline is the only one in that group influencing the insulin output, others work though insulin resistance). Stress hormones would need to push the sugar up *against* the insulin. That way eventually the insulin response might get more out of proportion and one would need some kind of support from the stress hormones thorough the day. So the reaction would be kind of a “learned” response.

    But well, I am on my own with these thoughts. I have no scientific proof if that could/would happen that way. Reactive hypoglycemia studies have some stuff that suggest it would be possible, but that’s all. You are correct in that I should first check for all known diseases that have similar symptoms.

    misukisu

    5 June, 2009 at 11:11 am

  16. Hi everyone,
    I am new to this site and just wondering if any of you have experienced food allergies as a result of thyroid abnormalities? I had radioiodine done years ago and my thyroid stabalized fairly quickly using Synthroid. Since that time I have had roller coaster PMS symptoms, depression, heart condition…you name it. The poster child for thyroid issues (lol). Recently it has started to impact my allergies both to food and environment. Which unfortunately I am reacting to with a panic attack response (I’m working on this though). Just wondering if you all have noticed this too? Seems like this site is full of “real” symptoms, not just the stuff they choose to print in the books :) . Really appreciate your help.

    brws

    30 August, 2009 at 1:44 pm

  17. Hi brws

    Yes. I have had major food intolerances and intolerances to perfumes and colourings for several years now, with symptoms like eczema, rashes, headaches, palpitations, brain fog, pain, you name it. I’ve only recently discovered that these are caused by hypothyroidism.

    It sounds like you are not on nearly enough thyroid hormone. As you are on synthetic T4 only, it may be that you are low on T3 and function better on something like Armour Thyroid instead of synthroid. Don’t believe your doctor if he/she tells you your blood tests are normal. Blood tests aren’t nearly as reliable as patients symptoms. I suggest you visit Mary Shomon’s site and find yourself a good doctor who will medicate you properly and according to your symptoms.

    alienrobotgirl

    30 August, 2009 at 10:48 pm


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