Archive for June 2009
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.
Subacute thyroiditis is presumed to be caused by a viral infection or a postviral inflammatory process. The majority of patients have a history of an upper respiratory infection prior to the onset of thyroiditis (typically two to eight weeks beforehand). The disease has been thought to have a seasonal incidence (higher in summer) , and clusters of cases have been reported in association with Coxsackievirus, mumps, measles, adenovirus, and other viral infections . Serial studies of viral antibody titers have implicated many of the same viruses, but the changes could equally be attributed to nonspecific anamnestic responses . Viral inclusion bodies are not seen in thyroid tissue. Furthermore, there appears to be a relatively comparable distribution of presentation throughout the year [4,5]. Thyroid autoimmunity does not appear to play a primary role in the disorder, but it is strongly associated with HLA-B35 in many ethnic groups . A unifying hypothesis might be that the disorder results from an often subclinical viral infection that provides an antigen, either of viral origin or resulting from virus-induced host tissue damage, that uniquely binds to HLA-B35 molecules on macrophages. The resulting antigen-HLA-B35 complex activates cytotoxic T lymphocytes that then damage thyroid follicular cells, because the cells have some structural similarity with the infection-related antigen. Unlike autoimmune thyroid disease, however, the immune reaction is not self-perpetuating, so the process is limited. Subacute granulomatous thyroiditis
Whatever form of subacute thyroiditis I had, I’m very interested in adenoviruses. Says Wikipedia, “Recently, several adenoviruses, especially adenovirus 36 (AD-36), have been shown to cause obesity in animals, and are associated with human obesity.”
I’ve argued on previous occasions, based on my own experience of my elastic metabolism, that a calorie is not always a calorie. I have posted on AD-36, the fat virus, and infectious obesity, a couple of times before. Some of the theories I have previously thrown into the field about what is wrong with me suddenly appear – gasp – actually likely to be true.
So not only do adenoviruses cause infections that can damage your thyroid, they appear to affect the metabolism in other ways too. I wonder if they cause some kind of mitochondrial dysfunction, as is speculated to occur in fibromyalgia?
I just thank my lucky stars I wasn’t infected with Coxsackie, which can cause polio.
I’m writing this in the garden having just returned from my doctor’s appointment. I have a variety of feelings about what has happened. On one level I’m fuming, on another level I’m relieved, on a third level, for some reason, I can’t stop laughing. Perhaps because I find cliché extraordinarily funny.
I knew that the appointment wasn’t going to go well as soon as I arrived. Somehow, I managed to remain self-assured and assertive throughout, and I managed to go in alone, without my partner holding my hand. The opening line went something like this:
“And how are you today?”
“Not very good still, but better than I was last time.”
“Hmm, I didn’t think so,” said doctor, putting on her sympathetic face. “Let’s take a look at your depression score today.”
“I’m not depressed.”
It went downhill from there. I refused to take another depression score. What the heck is the point of taking a depression score that has pearlers in it like “do you feel fatigued?” and “are you having problems concentrating?” Hello??! Surely one should rule out the physical causes of these symptoms before putting it down to something as airy-fairy and woolly brained as “depression”. FFS.
I explained to her that the reason I had been upset the last time I saw her was because I had been in a great deal of pain with my old DVT leg. I told her that I had since figured out it was connected to my carpal tunnel syndrome, as it always came on at night, and that this, at least, had improved. She seemed to go with this.
I told her that my symptoms weren’t caused by dieting, because dieting lowers TSH instead of raising it. “I knew that,” she said. Fair enough. She was perfectly happy to blame it on dieting last month, so she has obviously brushed up on her endocrinology.
This threw me and I ended up almost covering for her. “So, erm, there was no point me worrying about that then.”
She refused to increase my medication. “We wait six to eight weeks before testing again as it’s very important that your results don’t go too high.”
I have no idea what the heck the point of this lengthy delay is, since thyroxine only has a half-life of seven to eight days and it would have reached a maximum level in my blood weeks ago. There are doctors in the US who are happy to raise your dose after the first two weeks. The standard is to raise one’s dose every month. Last month, she told me she would test my blood again in a month’s time. She even told me “I can’t give you a free prescription quite just yet,” implying that she intended to treat me for life.
She told me that borderline results like mine shouldn’t really get treated. This is complete BS. I turned around and told her that UK thyroid treatment is appalling and backward, and in the US the TSH cut off is 3, and people with borderline results who have symptoms get the treatment they need.
“Would you like to see my basal body temperature chart?” I asked.
“No, that doesn’t make any difference.”
“But before my treatment, my basal body temperature was 35.5!”
“That doesn’t make any difference. It would be against professional ethics for me to give you more thyroid hormone, if you want to get treatment you need to go to another doctor. I gave you a trial of thyroxine to see if it made a difference. 98% of my colleagues wouldn’t have even done that.”
“Then I’d like to request a referral please. There’s a private doctor I’d like to go and see.”
She kept calling Doctor S ‘Mister.’ Perhaps I’m being paranoid, but I felt she was trying to undermine him.
“Are you sure you wouldn’t like to go and see one of the Sheffield thyroid experts, like Professor Weetman?” she asked.
Hahahaha, thought I. “No,” I said emphatically. “I’ve heard very bad things about him from other thyroid patients.”
She didn’t like that at all, she pulled a real face. It wouldn’t surprise me if she had consulted Weetman about my test results and that was why she had suddenly taken this hard line. Weetman is a bloody dinosaur who – shockingly – thinks anyone with a TSH of under 10 is just fat and depressed, I quote, “the poor dears.” He’s probably single-handedly held thyroid treatment protocols back by ten or fifteen years in the UK.
“Can I explain something? I’ve had these symptoms for five years now. They came on after a bout of bronchitis. I remember having a lump in my throat and I had heart palpitations and muscle cramps, and I started losing weight. Then about six weeks later, I started gaining weight for no reason, and I gained over a stone in a few months and I fought it all the way but it wouldn’t stop. I developed eczema on my face, it was really red. I’ve been to the doctor about this before but because it’s connected to my hormones, and I got ‘oh it’s PMS, it’s chronic fatigue.’”
“What were the results of your blood tests?”
“I was sent away without any,” I told her.
“Well at least I did that part right. I did test you for thyroiditis. But your antibodies are very low, so you can’t have a problem.”
“But sometimes it isn’t antibodies, it’s the infection itself that damages the thyroid.”
“No.” She shook her head quite insistently when I said this, though it’s perfectly well documented on official medical sites. Not that this is even relevant, since thyroid antibodies go up and down like yoyos in response to your overall immune behaviour, and usually they are at their highest when you’re feeling particularly great, and low when you’re feeling awful.
“Well, I’m not a thyroid expert.”
“I have got worse again recently and I had the same thing happen to me before Christmas, I had an infection and a period of feeling better followed by getting worse again.”
“But I have to treat you as a whole and I’m concerned that your symptoms are caused by depression and anxiety. Or they might be caused by something else. Remember we thought it was iron deficiency to start with?”
“Dr S is very good at sorting out concurrent problems like that.”
“Well, I’ll give you a referral to him. Do you mind if I send him all of your test results?”
“Not at all, he’ll need them.”
At least she promised to write me a referral letter and enclose my test results, and I can go and pick it up on Tuesday or Wednesday. Fingers crossed she doesn’t surf the internet before then and decide to do something radical like change her mind. I’m damn well going to tear open and read my referral letter and I bet it’s going to be unpleasant.
So that was how it went. This has really brought it home to me how poor the standard of care is for UK thyroid patients, and how tenuous things are for my future. If something terrible were to happen to Dr S, there would be no one else in the UK who would treat my problems correctly. Dr M is currently not taking new patients, and the GMC forced Dr D-P into retirement so he is unable to prescribe treatment, only guide it. At any time, the UK government could decide to close the loophole that allows prescription-free imports of prescription medications. I’m not sure what I would do then. I’d probably have to emigrate to the US, where naturopath MDs are ten a penny (except, no one can actually get into the US anymore, since the rest of the world is full of terrorists). I’d liken the treatment of thyroid patients today to the treatment of diabetics thirty years ago, before blood sugar monitors existed. You got your blood sugar tested once a month if you were lucky, you took whatever insulin dose your doctor set for you, and you were expected to die relatively quickly after diagnosis. For a long time after the invention of the blood sugar monitor, there was a massive fight against allowing patients to control their own treatment, on the basis that doctors knew better how to treat their patients symptoms than their patients did. These people don’t matter, let’s throw them in the bin.
I will freely admit to having problems controlling my emotional state at the moment. I am up and down, one day happy, the next kooky, the next sad. I’m unable to feel anger or irritation for very long. I frequently have physical adrenaline rushes for no apparent reason – when I wake up, after I eat, whenever I exert myself, and late at night. I have free-floating anxiety that latches on to any minor problem I might think of, which becomes very unpleasant late at night and makes sleeping very difficult. I have attention deficit disorder to the point where whatever comes into my head is what I go off and do, regardless of the importance of what I am working on. My memory is downright awful, and if I hadn’t written this down by now I would probably have forgotten half of it already. I used to be able to control these symptoms by cutting out biogenic amines from my diet, but now my body is so damned cold my enzymes aren’t functioning properly enough to keep me stable at rock bottom. These are all classic symptoms of hypothyroidism. That’s biology for you.
Many thyroid patients will attest that they had psychological symptoms long before physical ones. Treating these symptoms with sticking plasters would be completely pointless and unethical – for heaven’s sakes – how many drugs would I need? Ritalin, an anti-anxiety drug, a sleeping pill, an anti-depressant (for what? I’m not depressed, if I take prozac I’ll probably end up cackling manic), a drug for rapid cycling bipolar disorder? I don’t even know how they’d treat my memory problems. What are they going to do, give me something for Alzheimer’s? At what point are they going to start wondering where all of these different chemical imbalances came from, and whether they might actually be connected?
What I don’t understand is why doctors feel they have to blame any hint of psychological symptoms on an ill defined mental condition like “depression” or “anxiety”, as if the human brain is a nebulous cloud out of which anything can issue without external input. Why such a hard, engineering approach to physical ailments, but such a woolly approach to psychological ones? In my experience, the human brain is a soft machine, and perhaps 80% of the time, what you put in directly results in what comes out. Sure, some people manage to wind themselves into terrible states over nothing, but those people eat crap, drink, smoke, are stupid, easily led, and don’t analyse their own thoughts. I have an IQ of 145, and I have been using self-analysis and CBT techniques on myself for years. I am an extremely sensible person and I always work to move myself back towards neutral, and I’m always very positive and hopeful. I even went through a period of complete self-denial, where I tried to wipe out the notion from my mind that I had ever had a physical illness. I still felt like crap. Take it from me, CBT works for people who have psychological problems, but it doesn’t fix biological problems.
If anything, I’m very happy right now, because my life has been coming together and I’m close to completing my novel. That I’ve managed to do this in spite of so much adversity – fighting my brain all the way – is awesome, and I’m proud of myself. To be quite frank, I rock. Most people would have rolled over and died, given up, been put on anti-depressants, gone on the benefit, and probably lost their life-partner, their income, and their sanity in the process. I’m a fighter, I take after my mother, who is as stubborn as a bloody mule, and once she has her heels dug in you can’t move her with a ten ton truck. Now I just need to fix this stupid thyroid problem and the world will be a wonderful place. And by God I will fix it, if I have to treat myself with drugs off the internet and buy my own blood tests, I will damn well fix it.
I’m almost inspired to take up that old idea again of sending myself off to medical school. That’ll show ‘em, the barstards.
– End of Rant –
Apparently some aspirin sensitive individuals are hypersensitive to hydrocortisone. I wish I had known that three days ago, I would have been a lot more cautious. I’ve always had shaky/adrenaline reactions to hydrocortisone. I don’t know whether they’re caused by too much hydrocortisone, or by a withdrawal. All I know is that they tend to last all day.
So after the use of two or three small, pea-sized amount of hydrocortisone cream on Saturday and Sunday, today I woke up with a basal body temperature bang on normal, with a blood pressure that had risen slightly and was bang on my normal (about 125/70), and a pulse that was fast. I think it averaged between 90 and 75, though I had a scary moment when I thought it had touched 100. This is quite staggering, after being stuck in the vital signs doledrums for weeks.
I didn’t take anything today, I didn’t dare to. I woke up very nauseous with diarrhoea. This tends to happen to me with hydrocortisone, though never this badly. The problem was that I could feel my heartbeat, and my muscles were very weak. I couldn’t get out of bed for ages. Muscle weakness is a side effect of hydrocortisone intake and/or withdrawal. So is the slightly laboured breathing I’ve been getting. I read somewhere that supplemental hydrocortisone can cause a dip in testosterone levels, which are responsible for muscle strength. I don’t know how true that is. I felt exactly like this a few weeks ago when I first went to the doctor, right down to the nausea and upset stomach, so I guess I might have had a lot of steroid hormones coursing through me back then.
So my choice is – put up with being incredibly weak and drained but clear-headed with a normal body temperature, or put up with being brain foggy and confused with a massively fluctuating low temperature. It’s possible that I’m t4 toxic from my inability to use the t4 due to low hydrocortisone levels, though I was underwhelmed by my temperature in comparison to my pulse and I think this is probably unlikely. I can’t function at the moment, can’t even contemplate stacking the dishwasher or sweeping the floor. The house is a tip.
I seem to be tangled in a metabolic cat’s cradle, where tweaking one string starts to choke something else. Being stressed about getting past the hurdle with my GP isn’t helping. I’m having trouble calming down. I think I’ll be going later this week if possible, and I’ve persuaded my partner to come with me for moral support.
I’ve had a form of facial eczema, perioral dermatitis, for about six years now, ever since my thyroid problems began in earnest. Eczema is associated with thyroid problems, and this was one of the reasons I used to think I was hypothyroid a long time ago, before my “normal” basal body temperature measurements, and numerous bad reactions to various herbal “thyroid support” formulas, teas, and coconut oils, all put me off the trail of hypothyroidism.
The first treatment my then-doctor prescribed me was a hydrocortisone antifungal cream that made my skin considerably worse. The correct treatment for perioral dermatitis, which is thought to be bacterial, is a three month course of erythromycin or another tetracycline. As erythromycin makes me throw up at night, my next doctor (who was not embarrassed to look up the correct treatment in his handbook), prescribed me a clindamycin lotion. Clindamycin, or the benzoate it is preserved with, gives me back ache and a foggy head, but it definitely improves the eczema, though it doesn’t get rid of it. I have to be careful not to drink when I use clindamycin lotion, as if I do I will throw up at night.
People with perioral dermatitis, which usually affects women in the 20-30 year old age group, have to be extremely careful not to use any cosmetics or moisturisers or lotions on their skin, and there are even recommendations not to use fluoride toothpaste, as virtually everything will make the eczema flare up worse. One should not even use plain fats on the skin, as some skin bacteria thrive by consuming fats. The only two things I am able to use on my face are pure vitamin E, and pure glycerine, which is sold as a sore throat medicine. I currently use glycerine as it feels much lighter on the skin than vitamin E. Glycerine is the second ingredient in any regular commercial moisturiser, the first ingredient being water.
The most dramatic improvement I saw in my skin was after I went on the failsafe diet, when my eczema virtually cleared up from being all around my face and below my eyes, to having perhaps one small spot next to my mouth.
My skin reacts negatively to supplementation with a wide variety of vitamins, particularly methyl donors (e.g. betaine, folate), zinc, and pantothenic acid. Vitamins that my skin reacts positively to are: vitamin E (which reduces inflammatory leukotrines), vitamin A (which increases skin cell turnover), vitamin C (anti-inflammatory, but a mixed reaction, that can sometimes cause rebounds several hours after supplementation), vitamin B12, vitamin D (sunlight!), and calcium. Of these, B12, sunlight, and calcium have the most dramatic effects. Sunlight/vitamin D does not have an immediate effect, but usually kicks in around a week after getting a day of sunbathing in (regardless of its continuation in the mean time). I can usually see the effects of B12 and calcium the day after they are taken.
Drinking a significant amount of goat’s milk (1.5 x my RDA of calcium) over the last few months has got rid of that last “one small spot” I could never get rid of on failsafe. However, the eczema is still there and I can still feel bumps and impurities in the skin that do flare up after two or three days of misbehaving, especially with stimulants like coffee, and amines in tomato and cheese dishes.
So the eczema came on when the thyroid problem came on. I believe there are several reasons for this. Firstly, calcium is hugely important for skin barrier protection, and when you don’t have enough thyroid hormone, you don’t have enough calcium, because thyroid hormone regulates the intake of calcium into your cells.
Secondly, when the thyroid problem came on, my adrenals went wild in an effort to compensate. High levels of cortisol and adrenaline tend to depress the immune system and thereby allow the infection to take hold. I enabled my adrenals with many supplements, such as large doses of B vitamins, pantothenic acid, and vitamin C. I believe this probably made the eczema worse, though it made me feel better in myself because I needed the stress hormones. For quite some time I was highly dependent on pantothenic acid, one could say addicted. I have also noticed that during the first few days of starting a low carb diet my eczema is worse, due to the increase in cortisol and adrenaline that it produces. I wonder how much the additional stress hormones have to do with a low carbohydrate diet making me feel better.
So I’m in the situation where I need thyroid hormone and don’t have it, my skin calcium level is too low, my adrenals are outputting lots of stress hormones and depressing my immune system, and therefore I’m an easy target for an opportunistic skin infection.
Unfortunately right now I have to manipulate this catch 22 situation, because it’s possible I need hydrocortisone in order to deal with the thyroid hormones I’m on, so that the thyroid hormones can get into the cells and start working. Therefore I may have to suck it up and allow my eczema to come back until I can get myself on a level. So I’ll be asking for some more clindamycin as well when I go to see the doctor again!
Hopefully in a few months time when I’m feeling better, I’ll be able to take a course of erythromycin to kill it off once and for all, assuming that enough thyroid hormone fixes my erythromycin intolerance, unless just getting enough thyroid hormone in itself will fix it for me. Who knows? Hopefully it will fix my otis externa too.
Well, following on from yesterday, the hydrocortisone cream has made a definite difference. I have been free of brain fog for most of the day, though I’m now feeling quite weak in the muscles – possibly because, as described, my testosterone levels have tanked already, though it has to be said, the muscle weakness reduced after I took a multivitamin. Taking a multivitamin is an achievement for me. Under normal circumstances I would have reacted negatively to the B vitamins already.
The improvement has been quite amazing. I woke at a slightly warmer temperature and remained at or above 36°C all day. I even achieved a whopping 36.7°C earlier. I’m concerned about overdoing the hydrocortisone cream and getting myself into a thyroid crisis over that, so I’m going to take it easy, perhaps even skip my thyroxine tomorrow, if I can bear to psychologically. The only negative has been a slight skin reaction with my eczema, which I expected and which has been a revelation. I will post more on this.
I’ve found some very good adrenal fatigue information on the Stop the Thyroid Madness website. There’s information on the symptoms of low cortisol, including a link to different stages of adrenal fatigue (I think I’m around stage 4), and information on how to treat adrenal fatigue.
I don’t even need to sit down and do the four tests described – I already know I fail them. I have the orthostatic hypotension and I’ve been almost fainting, my pupils bother me, bright lights bother me. I have an insanely fluctuating temperature and I’ve been getting hot/sweating sensations, particularly at night, at stupidly low body temperatures.
Why can’t anything be simple? At least with my brain restored to me I have a better chance of getting what I want from my doctor.
Every book I have read on the thyroid so far (admittedly, not a mainstream reading list, but certainly a right-headed one), has warned that hypothyroidism can cause acute adrenal insufficiency. The mainstream endocrinology view is: no, it doesn’t, you’re talking altie nonsense. The view from the patients, the patient advocacy organisations, and the specialist thyroid doctors who treat based on symptoms rather than blood tests, is yes, it can.
There is, in fact, an autoimmune condition called Polyglandular Autoimmune Syndrome Type II, that causes multiple autoimmune attacks:
Polyglandular autoimmune syndrome type II (PGA-II) is the most common of the immunoendocrinopathy syndromes. It is characterized by the obligatory occurrence of autoimmune Addison’s disease in combination with thyroid autoimmune diseases and/or type 1 diabetes mellitus (also known as insulin-dependent diabetes mellitus, or IDDM). Primary hypogonadism, myasthenia gravis, and celiac disease also are commonly observed in this syndrome.
The specialist thyroid doctors whose books I have been reading suggest that a number of their patients can become sick with a mild/acute adrenal crisis a few weeks after beginning thyroxine treatment, as thyroxine treatment taxes the already very stressed adrenals when treatment is first begun.
I’ve had classic adrenal insufficiency symptoms for a long time, beginning six or seven years ago with reactive hypoglycaemia and afternoon crashes, brain fog, and not being able to wake up and function until after my evening meal. In fact, years ago adrenal insufficiency was one of my many theories, along with hypothyroidism, (and progesterone deficiency), as to what might be wrong with me.
Before I started taking thyroxine, I was a weak, trembling wreak who couldn’t breathe and was in an enormous amount of neuropathic pain. I seemed to have a lot of adrenaline running around. The thyroxine took a few days to start working, and then I began to feel better, and I felt better for a couple of weeks.
For the last few days I have been feeling worse. Very old symptoms I used to have before I went on the failsafe diet have reappeared – brain fog all day, inability to wake up until after my evening meal, apparent hypoglycaemia, and so on. I’ve been experiencing orthostatic hypotension. This has been getting worse. Today I almost fainted on three separate occassions after standing up, and a couple of days ago I had a bad moment in the supermarket that has prompted me to buy a medic alert bracelet. The thought of going to the supermarket actually fills me with dread. That’s how ill I’m feeling.
My basal body temperature has been declining. I’m now back to my starting point of 35.5°C. For the last three days I have been having trouble getting into the 36°C range throughout the day. I didn’t know, but this can also be a sign of adrenal insufficiency. So are the sudden salt and sugar cravings I have.
Doctor Skinner says he has, rarely, diagnosed Addison’s disease in people who present at his consultancy with hypothyroid symptoms, though they have other distinct features too. Most of his patients don’t require adrenal support, they are able to work through the symptoms and eventually begin responding to treatment, however a small number do have a coexisting problem with their adrenals, possibly due to pituitary dysfunction, which makes it rather hard to spot as one of the standard diagnostic tests for spotting adrenal dysfunction is to test that the adrenals respond to the pituitary hormone! Useless if your pituitary is shot. In these cases he will prescribe a small amount of prednisolone for a few weeks.
Doctor Durrant-Peatfield goes much further, suggesting that many patients with hypothyroidism have concurrent adrenal fatigue and should begin an adrenal regimen before even going near thyroid hormone, as he has seen many adverse reactions that are corrected with adrenal gland supplementation, or in more extreme cases, prednisolone. I had no idea, but natural dried adrenal gland and pituitary gland supplements are available as food supplements in the UK (and the US), from Nutri Ltd and Nutri Meds. In the UK, Nutri Ltd sell “Nutri Adrenal”. This is available online from a number of places, including The Nutri Centre, and Sunshine Health Shop.
Today I’ve been very ill – so ill I’m not sure what to do. I’m very restless, which is another symptom of adrenal fatigue, and despite feeling so ill I had to have my partner accompany me to the supermarket in case I fainted, I then decided to take myself off into the city centre to window shop. I wasn’t entirely on the right planet, and I managed to catch the wrong bus home and had to dive out at the critical moment when it veered off down the wrong road. I walked home, took my temperature, which was alarmingly low – 35.3°C – despite sweating, which must be a mistake – and plonked myself in a hot bath until it gave me palpitations – or what felt like palpitations, but was in fact a bpm of 75, the highest reading I’ve had in months.
What does it all mean? I do feel as though I’ve run out of adrenaline. I can’t cope with the simplest things at the moment, like the dog barking at me. The house is a tip as I’m too fatigued and faint to tidy, as bending over and picking things up tends to bring on moments of greying out. In my partner’s words, “it looks like a mad person lives here,” which I don’t suppose is far off the truth. Our central heating boiler has been broken for about a month now, because I simply can’t cope with the thought of facing the phone call to the support team and jumping through all of the hoops to get an engineer out (my partner could do this for me, but he seems to enjoy getting into Mexican standoffs with me over making phone calls in the hopes that it will “socialise” me or teach me to “grow up” or something). It’s not fun living in a cold house when you have a thyroid problem.
I don’t think my allopathic GP is going to take any of this “acute adrenal crisis” nonsense. I’ve bought some dried adrenal gland and some hydrocortisone cream off the interwebs, but they won’t arrive for a few days. I could buy prednisolone perfectly legally, but I’m afeared (sic) to take it without medical supervision. I ended up glugging quite a lot of salt and vitamin C earlier, with my evening meal. I think protein and salt are quite crucial to the sense of feeling better I get. I wondered whether I was hypoglycaemic, but my blood sugar was 5.8 mmol shortly after eating some chicken drumsticks. I rummaged in the medical kit until I found some old, out of date hydrocortisone cream, which I randomly chose to rub into my feet in the hopes the hydrocortisone would do me some good. Normally I have vile, trembling reactions to hydrocortisone, but I just calmed down instead. This evening, I don’t feel too bad.
I don’t know whether to skip my thyroid hormone tomorrow in case I get even worse, but then, if this is simply a thyroid hormone deficiency, I will make it worse. My partner wants me to go and see the doctor on Monday, which would be a week too early, and will make me look like a hypochondriac. I may have to make him come along for moral support. Last week I felt confident and my memory was working better, and I was almost sure I could convince the doctor to refer me to Dr Skinner. Now I wonder what on earth will happen.
I’m feeling pretty down in the dumps about all of this. There was a small book launch I really wanted to go to next week, which is in Nottingham in the evening, and I simply don’t think I’ll be well enough to travel down to it and socialise. I just thought there would be one long happy getting better now I’ve been diagnosed, but there seem to be so many damned obstacles in my way that are designed to stress me out with worry for weeks on end. These obstacles probably look small to an outsider, but right now they feel like mountains to me, and the thought of dealing with it all is just so fatiguing.
I’ve flipped over from being Miss Adrenaline 2009 to being Miss Sloth 2009. A couple of weeks ago, I was lucky if I could manage four hours sleep at night. I think this was because my adrenal glands were pumping out huge amounts of steroids to try to keep me stable. I was visibly shaking for some of the time, and internally trembling for the rest. I kept having hypnic jerks when I tried to sleep, little tiny seizure-like events that bruised my brain and woke me back up. I also had sleep apnea and some serious carpal-tunnel-of-the-leg-syndrome, none of which aided sleep. Those symptoms have now receded, thank heaven.
For the last two or three days I’ve gone into massive sleep mode, doing marathon ten or twelve hour sleeps, and it’s been taking me a long time to wake up when I eventually come around. Today I had brain fog and a very sluggish brain all day, until my partner took me out to a Japanese restaurant this evening and I got me a bit of MSG. It’s bizarre. When I’m in groggy-sleepy mode, a bit of glutamate always restores some of my higher brain function (albeit, making me somewhat hyperactive and full of gabble). When I’m in normal-mode, glutamate makes me spaced out and autistic.
Today I stuck all my body temperature readings in Excel and turned them into a graph. I’m going to be “one of those patients” and take it to the doctor with me when I return next week to battle out my treatment plan with her, and try to get a referral to the good Dr S. I’m still in two minds about whether to mention the dreaded f-word (fibromyalgia, ssshh!), or whether just to give her a simplified version of the last five or six years (I got subacute thyroiditis, it buggered my thyroid, my Sluggish Cognitive Tempo became so bad that I had to give up work, I’ve been trying to deal with it ever since, the last doc sent me away with a flea in my ear and never ran any tests).
The graph confirmed to me something that has been worrying me, which is that after starting the thyroxine, my basal body temperature rose quite quickly from 35.5°C to an average of 36.2°C, then hit the normal temperature range for one day only, then declined again to a fairly consistent 35.8°C. A disappointing total rise of 0.3°C. I have noticed an increase in symptoms again since the temperature fell back down, in fact I think I’m starting to hear very faint fly buzzing and phone ringing type noises again since last night, probably my brain trying to make meaningful sound from the tinnitus.
Being a perennial worrier, I’m absolutely petrified that my next blood test will come back in the normal range, because TSH is apparently quite sensitive to thyroxine treatment. I’m paranoid, I know, but at this early stage, with a rather sceptical doctor who only wanted to give me a one month trial of thyroxine, I’m liable to be given the bum’s rush out of her office if I don’t “pass” or rather fail (lol), my blood tests. I feel that this temporary rise in body temperature followed by a depression in body temperature along with “too hot” sensations when actually I’m still too cold, suggests that my body is in homeostasis and is so used to being cold that it’s digging in its heels about warming up. Body temperature and homeostasis are regulated by the hypothalamus, which is apparently too smart for its own good and needs a bit of a slap. It seems as though my body may have responded by lowering its own T4 production by lowering TSH. If it comes to it, I think I will have to explain this to my doc whilst trying not to sound nuts.
On a positive note, fleas in ears and bums rushes aside, I received a small order of Armour thyroid from an international pharmacy today. This gives me a great sense of personal victory and empowerment. Being on the verge of auditory hallucinations is simply not good enough, and if the worst comes to the worst, I damn well won’t stand for having my treatment withdrawn and I will start treating myself. I’m not going to go the way of my poor schizophrenic friend. They’ll have to lock me up to stop me.
I suppose in a few months time when I’m feeling better, I can tell people, “oh yeah, it got so bad I started hallucinating,” and it will earn me a certain amount of notoriety and je ne sais quoi, and they will look at me like I came back from hell. Last night I was thinking about putting pink streaks in my hair and getting a tattoo. I missed out on all that when I was a kid, and people do still say I look about twelve, so I might get away with it. I was thinking the tattoo can be my war wound, and it should say something like “twenty years too many,” so when people ask what it means, I can turn around and say “that’s the number of years I was misdiagnosed with fibromyalgia” like a real martyr. I guess that despite the twelve hour sleeps, I might be a teeny bit manic right now.
Actually, psychologically, I’ve started to calm down. I’ve gone through the shock, denial, anger, and I guess I’m at the bargaining stage. Hopefully if I get my bargain with the devil doc, I’ll skip the depression stage. I’ve been feeling very positive. I’m really looking forward to the future. I keep imagining all the things I’m going to do when I get better. I’ll be able to go on holiday and go out for restaurant meals and drink cappuccinos again. I may even go out and get involved in my local writer’s group and make some new friends, something I was simply too terrified to do last year. I think my confidence is starting to come back. I’m not expecting to turn into supergirl or anything, but, you know, it will be nice to have a life.
Having calmed down, I’m able to get back to writing my novel, and that’s what I’ve been doing. Technically, I’ve finished the first draft, so I’m just into revision now. One needs a good memory for revision, in order to spot any mistakes and inconsistencies. So I might have to revise it again in a couple of months time when I feel less like I have Alzheimer’s disease. I superimpose a kind of unconscious “method writing” (that’s like method acting but for novel writers) on my internal voice, and I tend to take on the traits of my lead character. So if I sound a little quirky now and then, don’t get worried about it, it’s because I am.