Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Anxiety problems

with 13 comments

Apologies for disappearing. I went into “can’t cope” mode, as you know I am prone to. If I owe you an email I’ll pull myself together and write back soon.

I’ve been having anxiety attacks. They can come on at any time, but particularly happen at night, and they can go on for hours and hours through the night. I’ve been struggling to get any sleep, feeling like hell, struggling to do even basic housework or walk the dog, feeling very hypothyroid.

I’ve been moderately anxious since I really started to crash and become really hypothyroid a few weeks ago, but the anxiety attacks have come on quite strongly in the last couple of weeks. I don’t know why. I’ve been worried it might be my adrenals and getting into a silly feedback loop about being anxious about being anxious, but I don’t really think it could be adrenal, there’s too much psychology involved, but I’m going to do a saliva cortisol test just to be sure.

I think it’s partly just a reaction to the thyroxine, since my body is so out of kilter that I’m having some “hyper” symptoms even though I’m definitely still hypo. Apparently there are differences in the quantities of adrenergic receptors in hypothyroid people – too many alpha ones compared to beta ones or some such thing, and that’s something that will correct over time.

It may also be connected to reintroducing a lot of carbohydrate and sugar into my diet in an effort to not diet anymore. Apparently withdrawing from a ketogenic diet can cause anxiety as the body gets used to having all those extra calming neurotransmitters, so I’m trying to cut down a bit on the sugar and the oats (even though I love homemade flapjacks almost as much as life itself).

I think it’s also because I’m a hypochondriac – and by this I mean that though I really am ill, I do obsess about being ill and I can’t stand the sensation of feeling ill and I refuse to put up with it, and so it all drives me a bit crazy. This probably hinges into my autistic traits – being extremely hypersensitive to one’s surroundings and bodily sensations makes it difficult to switch off and the whole thing becomes overwhelming.

I had to go back to the GP, I saw a different female doctor, who told me “don’t worry about this thyroid problem, you’ve had Generalised Anxiety Disorder for the last five years, that’s why you have attention deficit disorder.”

Of course I’ve only been anxious for about six weeks and having anxiety attacks for two weeks, so this is BS. You have to be anxious for at least six months solid to get a diagnosis of GAD, and I’ve been very, very calm over the last few months. And besides, adrenaline helps to focus my attention – that’s why they give ADD kids Ritalin, isn’t it? That’s why I’ve managed to finish writing my novel, ffs.

Anyway, I came away with a prescription for beta blockers. I’m breaking open the capsules and taking small amounts as required, just to try to help me to sleep, because the anxiety tends to come on at night when my imagination gets overactive. The beta blockers give me fibromyalgia – musculoskeletal pain, back ache, and restless legs syndrome. Apparently they do antagonise thyroid hormone on some level. I suspect this is how salicylates operate too.

I really thought getting better was going to be plain sailing, but apparently not. The psychology of all of this waiting to get my dose increased is driving me nuts. I’ve actually resorted to seeing a counsellor and an acupuncturist in desperation in an attempt to control these anxiety attacks.

Acupuncture does have measurable effects on the sympathetic and parasympathetic nervous system. It can alter blood pressure, breathing and pulse in measurable ways. There are papers on it, so I was willing to give it a go, just for giggles. I saw the acupuncturist for the first time today – I wasn’t sure what I was expecting, I didn’t think it would work really. She started by putting two needles in each of my ankles, and when she put the last one in, I had a strange dizzy moment. I dismissed it as psychological. Then she put needles in my wrists and one in my forehead between my eyebrows. Once they were in I had a few minutes where I started to develop anxiety, I could feel my heart starting to go and I started to struggle with my breathing. I had been expecting to feel relaxed! Anyway, I fought with it and eventually I started to go calm. After she took the needles out I was incredibly calm, like I’d had a dose of valium or something. I’ve remained calm all day. I’m still pretty calm now, so hopefully I won’t have another awful night’s sleep. Even if what I experienced was psychological – which it didn’t feel like – it works a lot better than beta blockers! I can’t wait to go back for another session.

I saw a counsellor earlier in the week. This going to see practitioners is very odd, I would never normally have the courage to do it, but something seems to have changed there. Anything I can do to get my head round the mental aspects of the anxiety, I’m willing to try. The counselling session left me feeling pretty overwrought and was possibly counterproductive, but hopefully that will change over time. Although I’m normally a very balanced person, I do have a lot of “issues” in my past – being bullied at school for being a geek, a chronic fear of doctors brought on by being accused of making up my fibromyalgia when I was thirteen years old, a lot of experience of rejection and fear of being rejected. Talking about it is like dredging muck up off a riverbed, possibly muddying the waters, possibly ineffective. I don’t know, we’ll see how things go.

I went to see Dr S this Wednesday. I’ll write about the visit soon. He’s upped my dosage of thyroxine to 50mcg, which I’ve started and I already feel like I have more energy for it, despite the bad sleep. I was able to walk the dog quite a long way today without feeling like I needed to collapse, despite a bad night’s sleep. When I got back home I realised I was more heat tolerant than usual. I’m heat intolerant as well as cold intolerant. Normally when I come back from a walk I have to strip off my clothes because I feel so hot, even though I’m not actually overheating. Today I didn’t get that unbearable sensation. It’s funny how some effects of the thyroxine come on almost immediately, and others only change slowly as the weeks go by.

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Written by alienrobotgirl

26 June, 2009 at 11:38 pm

Posted in Thyroid

13 Responses

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  1. Your symptoms do sound somewhat hyperthyroid. I can sympathize with the having trouble sleeping and the anxious feelings, as that happened to me in the brief couple of thyroid storm episodes I had back in March (which thankfully have not happened again). Maybe it does have something to do with the thyroxine in combination with the extra carbs in your case. I’ve finally got my weight down to the high end of normal and sometimes eat more carbs. But I still avoid sugar … it’s poison you know 🙂

    When I add carbs, I tend to go for starchy carbs that have no fructose. My favorites are potatoes with lots pasture butter at home or fully loaded with sour cream and bacon bits when I eat out. I also eat organic corn flakes with raw Jersey milk for breakfast most days.

    I quit my caffeine addiction three years ago because it added anxiety and nervousness that I don’t need. The daily walks I take seem to help me relax after work. Some types of meditation or even EFT (tapping or accupressure) might possibly help. I did sound current meditation many years ago. You basically focus on the tones in your ears and let go of your thoughts. I’ve tried EFT a few times but haven’t felt motivated to use it regularly. Also, have your partner give you a massage 🙂

    oz4caster

    27 June, 2009 at 1:32 am

  2. Wowow! You’ve been so proactive, i’m a little jealous. I’m so proud of your bravery in all these new places!

    That said, i’m sorry you are starting to suffer from so much anxiety. Having been a big sufferer myself for years, I never really found a solution, it just died off and got replaced with depressive emo blahs in the past year. I would be careful of histamine because that used to set me off. I also avoid eggs because they seem to exacerbate the problem, I know choline increases adrenaline, even today eggs make me giddy. I found theanine really helpful for helping me sleep. Any gaba raising agent is probably helpful for anxiety. I did notice a problem with carbs back then, wasn’t it the first thing I was complaining about when I first joined failsafeNT? I can’t remember now!

    During an attack, the best thing for me to do is find something distracting, DVDs or games etc. I used to consult my partner all the time but i’ve found cutting off straight away is the best thing rather than wasting any time. With impending doom, I know its actually quite hard to get yourself to do something proactive about it at the time other than stay frozen on the spot or running around flailing.

    I’ve always wanted to try accupuncture! I react extremely well to EFT tapping, actually just imagining myself doing the tapping is calming enough, I guess its all about a degree of distraction, endorphins, gaba…

    You sound very balanced in this post, i’ve been a bit worried you anxiety was carrying you away, its good to take a break!

    Elena

    piratehyde

    27 June, 2009 at 1:29 pm

  3. Hi Bryan, yeah, I think I might be getting overstimulated by the sudden increase in hormones, even though I’m still hypo.

    Have you had your thyroid checked recently – hormone levels and antithyroid antibodies too? Having a couple of bouts of thyroiditis, plus you mention a slight weight problem, rings alarm bells for me. Have you ever had those symptoms before? When you were younger, or in connection with bronchitis or a throat infection, chicken pox, epstein barr, or food poisoning?

    I’m interested in EFT. I’ll give it a try.

    alienrobotgirl

    27 June, 2009 at 11:05 pm

  4. Thanks Elena. I’m sure I wouldn’t be this brave if I wasn’t taking thyroxine and B12, and being a hypochondriac. There’s nothing like hypochondria to motivate me!

    I’ve told a few people about the acupuncture and now everyone is looking at me like I’m bonkers, but you should try it. I have a friend who raves about it, who I thought was bonkers too. Even if it’s only psychological – which I’m not sure it is – it’s really calmed me down.

    Histamine – interesting. I’m sure grass pollen allergy season isn’t helping me! The anxiety did start at the same time as the grass pollen started to affect me!

    You know you keep sounding like a Hashi’s candidate. Did you ever have heart palpitations or get hyperactive when you were younger? Ok, ok, must stop diagnosing people!

    alienrobotgirl

    27 June, 2009 at 11:18 pm

  5. Dr Mercola has a free course on EFT that covers the basics. I’ll be curious to hear what you think of it. It may be mostly psychological, but the tapping could possibly have some calming effects. The mind is a powerful influence when it comes to health.

    About 5 years ago I had a similar hyperthyroid episode, well before I changed my diet and when I weighed about 40 lb more than now. That episode lasted much longer, several weeks, as opposed to a day or two. I really think my raw Jersey milk fast solution snapped me out of the more recent episodes within 12-24 hours, but there’s no way to be sure. If so, it could be the immune modulating aspects of the raw milk may have been the the main normalizing factor. I’m guessing that would only work in cases where the immune system has gone bonkers for whatever reason to cause the hyperthyroid episode. It would make an interesting study. But who would pay for it 🙂

    oz4caster

    28 June, 2009 at 2:18 am

  6. I’ve been having acupuncture for a little over a year now, and it’s the only thing I’ve found that’s consistenly helped me. I went to the first session extremely sceptical, trying it in the same spirit as I tried kinesiology (all of the “sensible” things were just making me worse, so it seemed like time to give the crystal-waving nutcases a try), and had an *intense* reaction. Physical and psychological — some things started aching, other things stopped aching for the first time in my entire life, and I was weeping uncontrollably, among other things — like I said, intense. And my accupuncturist is pretty conservative; she goes very easy with new patients, only a few needles. I’ve never had that strong a reaction again, but I always feel improved for having gone; I leave feeling a lot more balanced physically and emotionally. I have a session once a week, and can really feel it if I have to skip one for some reason. It hasn’t fixed me or my idiot body, by any stretch of the imagination, but it, plus chi kung (it’s a meditative form of tai chi that I’ve been finding to be particularly effective for reducing the severity of bad food reactions, when they happen), plus shiatsu are what keep me upright and functional.
    (My experience of kinesiology was that it was agressively normalising psuedo-scientific shamanism, BTW, so it’s not just that I’m susceptable to psychosomatic “cures”.)

    Chi-based forms of health care get dismissed for the same reasons we get told we’re hypochondriacs: western medicine is contemptuous of patient report as data, and is prone to rather stupidly believing that lacking the ability to measure something is the same as proving that it doesn’t exist. Well, that plus a little racialised arrogance. Acupuncture, chi kung, shiatsu, etc, are all based on a tradition of medicine that’s spent thousands of years employing methodologies that match up very nicely with what we’ve come to regard as scientific only in the last few hundred years: careful observation, analysis of data, formation of working hypotheses, testing of working hypotheses, careful observation and analysis, refinement of hypotheses, etc etc. It’s not based on post-industrial western scientific precepts, no, and the vocabulary and proposed mechanisms of action are metaphysical… but half of the things doctors believe about the nature, causes, and mechanisms of our kinds of mysterious health issues have more to do with professionalised mythologies than with actual science, anyway.

    Part of what makes these kinds of health-practices worth pursuing, for me, is that they feel… extremely aspie, for want of a better way of putting it. It’s not a way of understanding, experiencing, or working with the body that could have been developed by anyone who lacked somatosensory amplification and a data-hungry relentlessness about finding patterns. A lot of chi kung is like highly formalised stimming (it looks like it and it feels like it). The dietary advice, before it was ‘improved’ by modern beliefs about nutrition, centred around things like “don’t eat rich food, avoid all grains, don’t eat raw plants, don’t eat old meat”, all excellent advice for spectrum-people, who tend to be as sensitive to poisons as we are to information. The way it works feels like it was designed for a body like mine, a brain like mine, whereas most things in this culture at this time are optimised for the peculiar physiology and psychology of self-styled “neurotypicals”, and feel like alien technology that I have to somehow MacGyver into something useful. The chi stuff just… works.

    justanotheramy

    28 June, 2009 at 7:46 am

  7. I was actually really balanced as a kid. My mum recalls I was just tired and preferred to sit and play quietly. We’re pretty sure the coeliac kicked in when I was young because I didn’t maintain my height percentile. I started developing anxiety when I entered puberty. I started to faint sickness to get out of school around the same time… I was starting to get uber stressed.

    piratehyde

    28 June, 2009 at 9:38 am

  8. Hi there,

    I’ve been taking levothyroxine for about 5 weeks now and have also seen an increase in anxiety symptoms over the past few days. Prior to the anxiety I was experiencing some nasty dizzy spells and problems I think were related to low bp. Then again, my allergies have been nuts lately, too, so I suppose that could have something to do with the anxiety as well. Who knows. I’m feeling pretty frustrated at the moment.
    I finally got my labs back that initially inspired my endocrinologist to start me on thyroxine replacement therapy even though the results indicated that my hypothyroidism was ‘subclinical’ at best and would typically not be treated. I was surprised to see that my TSH was 5.66 as in the past it has never gotten that high. My free T4, as usual, was resting at the bottom of what is considered ‘normal’ as it has been for the past 8 years. I have been presenting with typical hypothyroid symptoms since I was 17 but doctor after doctor has dismissed it as a cause for my ailments once they’ve taken a look at my blood test results.
    I am curious to know the reason behind the sudden jump in TSH levels. When the test was taken during the first week of June, I was still eating butter, which was something I had only started doing a few months prior. And I am well aware that dairy can illicit an immune response in certain individuals, particularly those with HLA-DR issues, which I am starting to suspect applies to me. Eggs were also added to my diet a few months before the test was done. Also, B12 injections were started (_turns out I was deficient in spite of supplementation_) in the time between this latest test and the last ‘normal’ one which was performed five months ago. I wonder if any of these things influenced the results?
    Another variable which shouldn’t be discounted is that I happened to be doing an 8am cortisol blood test along with this recent thyroid panel so I was fasting at the time. This is the only time I have ever had a thyroid function test done early in the morning while fasting. I found an article that states having the test performed early in the morning while fasting can mean the difference between a diagnosis of subclinical hypothyroidism and being determined as normal. Apparently, TSH levels are higher in the morning before the first meal. I had follow up lab work done yesterday, which I intentionally scheduled for early morning and for which I fasted. I’m nervous to see what the results will be. If my doctor thinks 5.66 should typically not be treated I am afraid she will not increase my dosage or find the right level for me if she sees the slightest decrease in the TSH numbers.
    My anxiety started well before I learned of the test results. In the past I would have gone to see the acupuncturist, who I started visiting two years ago for lower back pain, anxiety, brain fog and GI problems. I find acupuncture to be extremely beneficial and was hooked after the first visit. Maybe it is the endorphins. I am trying my hardest to hold off going again until I get a few more pressing health issues figured out.
    I am struggling with infertility (something I hear that can be treated with acupuncture when the time comes).
    I also had an MRI in the beginning of June which showed a very small ‘growth’ on my pituitary. More accurately, there was a spot on the MRI and one side of my pituitary is enlarged such that it is kind of displacing the pituitary stalk a little bit. I can’t help but wonder now if it is a case of pituitary hyperplasia caused by untreated hypothyroidism. My ACTH and IGF-1 levels were slightly above normal parameters in my latest test results, as well.
    However, something else that is also off is my Vit D levels. During routine testing, my allergist checked my 1,25 dihydroxy vit D and they came back extremely high–way above the normal range. I am allergic to fish and shellfish and I don’t supplement with vit D. I can only guess that I have vitamin D dysregulation. Maybe I have sarcoidosis and that is what’s messing with my pituitary? Is that why I have had heart/bp issues since starting the thyroxine?
    It is all so exhausting and dealing with everything-the doctors and their frequent incompetencies, the physical and emotional symptoms, day to day life when you just don’t feel well-can be overwhelming. The fact that you have managed to keep up with the blog at all is incredible. That you can share your frustrations and experiences openly and tell your story over and over again is truly remarkable.

    melungeongirl

    2 July, 2009 at 7:11 pm

  9. Hi melungeongirl,

    My anxiety has gone completely since being on 50mcg of thyroxine for a few days, though I’m sure that the acupuncture helped and I can’t wait to go again tomorrow. I can only theorise that the anxiety was 1) some sort of downgrading of hormone production – apparently some people do back track if they stay on a low dose for too long, as the body is confused and can downregulate hormone production in response, or 2) I was still going downhilll at the time I started thyroxine and the thyroxine only negated the bottom of the trough for a couple of weeks, and the anxiety was simply caused by my body being at rock bottom of its tolerance for lack of thyroid hormone. Or 3) possibly, I was simply over-reacting to getting some thyroid hormone into my system.

    I presume your adrenals are okay if you’ve had a proper test? I think your fertility problems will clear up by themselves once you have the thyroid sorted. Is anything being done about your pituitary? I’m amazed if this isn’t being taken into consideration. I suspect the increased TSH might relate to the pituitary, or, you have Hashimoto’s (in which case your TSH would go up and down naturally) or have had an infection in the last couple of months that has worsened your condition.

    The vitamin D thing – there may be parathyroid involvement if your vitamin D is that high – possibly you’re producing too much parathyroid hormone. I wonder if that relates to your pituitary too? Sarcoidosis is definitely possible with autoimmune thyroid disease. The good news is that you can fix sarcoidosis with corticosteroids and time (and maybe even the Marshall protocol – though I wouldn’t use it to treat any other condition). As the symptoms of sarcoidosis can be confused with those of hypothyroidism, you should definitely get your doctor to investigate, in case this is the cause.

    Doctors are infuriatingly arrogant sometimes, presuming to tell you what symptoms you are or are not allowed to be having! The whole field of endocrinology needs nuking and starting again from scratch. Do not despair. If your doc won’t treat you, ask for a referral to a sympathetic private specialist who will. There is no need to suffer. Look one up on http://www.thyroid-info.com, it will be worth the money as it will change your life.

    alienrobotgirl

    3 July, 2009 at 12:23 am

  10. Hi,

    Glad to hear that the increased dose of thyroxine seems to be working for you and that your anxiety has diminished.

    I’m not confident that my adrenals are ok at all. I have suspected adrenal insufficiency since October of last year when I experienced adrenal crises after receiving a dose of steroids as treatment for anaphylactic shock. (On top of the food intolerances, I also suffer from a large number of IgE mediated food allergies.) I had to stay on steroids for a month until my adrenals could kick in again.

    I just got the results back from my endocrinologist regarding the six week follow-up check of my TSH. According to the doc, my TSH levels are now below normal. Frustrating but not surprising. I am aware of a few instances in the past where I have jumped from a hypoactive to hyperactive thyroid, as well as the reverse. Maybe 50 mcg of thyroxine was just too much. Going to halve the dosage for the next 6 weeks and see what happens. She said the rest of my numbers were ‘normal’ which includes the thyroid antibody levels and the Vit D. Expecting a copy of the actual results in a few days.

    melungeongirl

    13 July, 2009 at 7:46 pm

  11. Hi Melungeongirl

    With TSH that wacky, surely you must have hashimoto’s or some other complication, such as a pituitary problem. Did you feel well on the 50mcg dose, or worse? What were your vital signs? Temperature, pulse, BP? How you FEEL is far more important than what your blood tests return. I’d recommend you find a doctor who will treat you based on your symptoms rather than your blood test.

    alienrobotgirl

    14 July, 2009 at 11:08 pm

  12. Hello there,

    Sorry it took me so long to reply. My body has taken me on a roller coaster ride, of sorts, over these past few weeks. Today is the first day that I have felt composed enough to write.
    The periods of dizziness that I began experiencing when I first replied to this post turned into all out fainting spells. My heart began to feel sluggish too and absolutely refused to respond during periods of exertion or stress. I finally gave in and went to the doctor, who then referred me to a cardiologist who did some tests. Turns out there is a drastic difference in my standing and sitting blood pressure. I have been diagnosed with othostatic hypotension and neurocardiogenic syncope. My cardiologist basically says that I have some sort of autonomic nervous system disorder. So now my primary doc is doing some investigating to determine if it is the result of another undiagnosed disease, probably autoimmune, or if it is primary. Looks like the problem is more with the sympathetic nervous system. Maybe that impacts the the adrenals too and that is the reason for the cortisol shortage? Interestingly enough, there is a relationship with the sympathetic nervous system and mast cells/histamine release. This is a big deal to me because I have had to take Gastrocrom (a mast cell stabilizer) since Jan before every meal to keep me from having an allergic reaction to anything I eat. My allergist has said before that I seem to have developed some sort of mast cell disorder. Maybe this is what’s going on? Epinephrine and Norepinephrine inhibit histamine release from mast cells. *Sigh
    Getting so desperate I am about to ask for SSRI’s since they have been known to help with autonomic nervous system issues. In the meantime, I have been ordered to drink a ridiculous amount of water and to pour salt on everything.
    Oh yes, stats…my blood pressure has been extremely low for the past several years regardless of by body positioning. I have to eat a ton of salt just to get it to 100/60. Body temp barely scrapes 97 degrees. (My legs swell like crazy in hot weather or when sitting, too.) I understand that these stats are also influenced by the ANS, as is the thyroid gland.
    Currently, my thyroid gland is swollen and has a small nodule on the left side. Antibody tests came back normal, but I really wouldn’t be surprised if I have some sort of autoimmune disease, perhaps even to receptors involved in the nervous system response.
    Energy quickly dwindling.
    Hope you are faring well. Will check your recent posts now.

    Best

    melungeongirl

    21 August, 2009 at 8:47 pm

  13. Hi melungeongirl

    The symptoms you have are absolutely typical of low adrenal output and they are exactly what I was experiencing. I made three changes – I took more thyroxine, I took B12 (a deficiency of which can cause autonomic nervous system problems like this and is common in hypothyroidism), and I started being very careful/regular with my carbohydrate consumption as not to tax my adrenals.

    Now you’ve said that your thyroid gland is swollen, it’s really obvious that you have a primary thyroid disorder that is not being treated with enough thyroxine. Once you are on enough thyroxine, your thyroid gland will no longer be swollen. You need to get the nodule removed and checked ASAP.

    As you have a problem with your pituitary, you need to tell your doctor to IGNORE the TSH test and focus on your T4 and T3 levels, because your physical signs and erratic test results indicate that you probably have both primary AND secondary hypothyroidism. The TSH test is just confusing the picture. In secondary hypothyroidism, not enough TSH is produced by the pituitary to stimulate the thyroid. Possibly you also have secondary adrenal insufficency due to the pituitary problem and/or lack of thyroid hormone, in which case an ACTH test is useless too. You’d get a more accurate picture of your actual cortisol output by just drawing blood levels or taking a 24hr saliva test.

    If the thyroid nodule is cancerous (touch wood it isn’t), it’s vital that your TSH is completely suppressed to zero to prevent any worsening or reoccurrence. Most turn out to be benign (my aunt had thyroid nodules and is on thyroxine), but it is best to have them removed as they can cause discomfort and obstruct your breathing if they grow. It may also be partially responsible for the erratic test results.

    I’m really not sure what your doctor is messing around at, but I don’t think he/she is doing their job properly, it’s obvious you’re really ill, and he/she doesn’t have enough understanding of the endocrine system to treat you correctly. Most doctors don’t have a clue how to treat endocrine disorders properly, endocrinologists included! If he/she is going on test results alone, he/she is not doing their job. If your doctor won’t treat you correctly, you need to go to one of the trusted thyroid/endocrine specialists listed on Mary Shomon’s site, who will give you the treatment you need and investigate your problems fully. You may need other hormones too if your pituitary is shot. Don’t waste any more time on this doctor, your health is at stake.

    All the best and good luck.

    alienrobotgirl

    22 August, 2009 at 12:06 am


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