Hello. Can’t stop! I know, the blog has been dormant for a long time, and I really owe everyone an update, but I honestly don’t have time at the moment. I’m going through some big life-changes (new relationship, new home, new ways to earn money…). But things are going relatively well, the thyroid problem is mostly under control, and my food chemical intolerances are 90% gone when I’m well – though when I go through a bad patch with my thyroid they come roaring back.
But this is a housekeeping post. I can’t afford to pay for a load of domain names anymore, so I’m moving the Plant Poisons and Rotten Stuff information site to here in anticipation of the domain name expiry: The Failsafe Diet Explained. Everything should still be there.
After having a bizarre Christmas period during which I have had to reduce my thyroxine dose to nothing, I trotted off to the GP to ask for thyroid autoantibody tests.
The GP told me that she could not run the tests, and that I would have to be referred to an endocrinologist at the local hospital. To my frustration, I was told that I would have to wait 6-8 weeks for my appointment. The doctor wouldn’t even give me a TSH/T4 test.
As I have become very worried about the pressure pain in my sinuses and the periodic bouts of eye pain, double vision in my peripheral field, bloodshot eyes, and increasingly blurry eyesight, I explained to her my concerns that I may be developing Thyroid Eye Disease. She told me to go to the opticians for an eye test.
I have always had perfect vision. By perfect vision, I mean I can normally see a gnat’s whiskers across a football field. Being a little OCD, this makes specks of dirt annoying! I have only been to an opticians once before in my life, when I was small, and I was experiencing double vision (I was sent away to do eye muscle exercises by crossing my eyes).
I explained the situation to the optician, who examined my eyes and pronounced that yes, indeed, of all the different conditions which can produce blurred vision, double vision and pain, mine is consistent with thyroid eye disease. I am also now long sighted. I’m not too long sighted, only +0.75 in my left eye and +0.25 in my right eye (a decidedly uneven state of affairs), but it’s enough to give the world an unpleasant haze, and annoy the heck out of me when I’m trying to work on the computer. I won’t post a picture of myself, but I’ve looked in the mirror over the last few weeks, and wondered if I’m developing a squint – the reason being, my left eye is marginally wider than my right, and I can tell that I don’t look normal. I look sort of like this: O_o
I really don’t want it to get worse. I’ve seen pictures of thyroid eye disease sufferers on the internet, and they look like cartoon people with eyes popping out of their heads. That would be deeply embarrassing, and decidedly unattractive.
So back I trotted to the GP, who asked “did they actually examine your eyes?” My dear GP, how I love her not. She is a perennial skeptic of anything being wrong with me and it’s obvious she just thinks Dr S overdosed me on thyroid hormone – well, she’s wrong, but I’ll get to that. I have an ophthalmology appointment (try pronouncing that phrase with your mouth full) at the beginning of February.
Meanwhile, I go home and panic about going blind.
I’ve read a fair amount of stuff about the crossover between coeliac disease and thyroid autoimmunity, and I’ve met people who swear that their thyroid autoantibodies returned to normal after they gave up gluten. I’ve been eating gluten since around August 2009 (during my first round of autoimmune tests, I had been off gluten for months, and there was no sign of autoimmune activity). The dates fit very well. I first started to get the dizziness and sinus pain in September 2009. I noticed that every time I ate gluten, I’d get dysautonomia at night, including bouts of mysterious palpitations. I really ate quite a lot of gluten over Christmas (I already had palpitations and a pain in the nose and eyes, so… meh). I was really, really hungry all of the time, and when you have guests and occasions and you go visiting, these things happen.
My day to day symptoms towards gluten have always been very mild compared to the ones I (used) to have to food chemicals when my metabolism was non-existent. I know that gluten has recently been causing me huge digestive issues and bloating. I have gained ten pounds in the last four weeks – not a normal state of affairs for either a coeliac or a hyperthyroid patient, and certainly a feat that breaks the laws of thermodynamics, but I know my body, and I have been on and off gluten for twenty years due to symptoms like these when I eat gluten.
So the situation is – if my unproven autoimmunity is being caused by or exacerbated by gluten, and I give up gluten now to save my vision, by the time I get my endocrinology appointment and get some blood tests, there will probably be no antibodies left to prove that I am autoimmune. So I can’t give up gluten until I get my tests.
I made a lot of enquiries and scoured the internet, but it’s simply impossible – at least in the UK – to get antibody tests for Graves disease done independently of the NHS. However, I can get Hashimoto’s thyroiditis antibodies (thyroid peroxidase – TPO and thyroglobuin – TG) tests done privately. So I decided to get them done, along with a thyroid hormone panel, and for good luck, a coeliac disease test. I went to my lovely local private doctor who did the previous set of blood tests for me that uncovered my folate deficiency and the temporary hyperthyroidism I had in the autumn.
Two days after I had the blood tests done, I got an endocrinology appointment – for the following week! It seems they were rather more impressed by my blood tests and eye concerns than my GP had been.
Darn it! Thinks I, I just wasted £200.
To be honest, I didn’t really like the endocrinologist very much. I found it hard to engage with him. He said a couple of things that annoyed me – such as “we call any TSH test under 10.0 subclinical hypothyroidism and you probably don’t need thyroxine.” In ANY OTHER COUNTRY than the UK, the absolute top cut off point is 5.0. In the US it is supposed to be 3.0, with a recommendation to lower to 2.5. In Belgium (or is it Germany?) it’s 1.5. So enough of this balderdash, “subclinical hypothyroidism” is a term invented by UK endocrinologists, who favour diagnosing their thyroid patients with made-up mental disorders (they fancy themselves as psychiatrists as well as endocrinologists).
I certainly set him straight on that one. I didn’t get into an argument over the validity of the TSH test, instead I explained to him what a very rapid descent I had been on when I had been tested. Most doctors accept that TSH is slow to catch up with T4 and T3. When I told him about how myxedematous I had been, and how I had developed carpal tunnel syndrome and excruciating nerve pain in my DVT leg, he decided that I was right, and my TSH “probably would have been a lot higher if it had have been left a couple of months.” (Hahaha! Small victories).
He was smart enough to test my cortisol levels, coeliac antibodies, vitamin deficiencies, and goodness knows what else – I took photos of the test orders but I haven’t had time to get them off my phone to reverse-engineer the abbreviations. He gave my thyroid a cursory exam – i.e. he poked it, looked at my eyes, and checked my shins. Graves/eye disease patients can get inflamed shin bones. In fact, mine have felt a little tender just below my knees, but I neglected to mention this at the time. The same fatty tissue that is in the thyroid and behind the eyeballs is also in the shins. In me, however, it seems to be in my sinuses as well!
I had a momentary panic after leaving his office, while waiting in the blood test station (with all the warfarin patients and diabetics – you can tell the diabetics, they’re elderly and have bandages on their legs covering their ulcers, the poor souls). I couldn’t see the Graves antibody tests on the order form – in fact he had used a different abbreviation to the one I was expecting – TSH R ab – thyroid stimulating hormone receptor antibodies. Apparently these are present in around 75% of Graves patients. The only other thyroid antibody test on there was TPO. So a positive is a positive, but a negative is not a negative it’s a null answer, because he didn’t order, or it isn’t normal to even test for, the other types of antibodies present. This makes me cross. Especially after just reading an abstract written by a professor from this very hospital, who seems to me to be a sloppy ignoramus, who alleges Graves is very easy to diagnose and rarely complicated by other factors (oh yeah?), so why should we even bother testing for Graves antibodies at all?
As we shall see, the above sloppy testing scenario is important, bear it in mind.
I have been sent away and given a follow up appointment in six weeks time. I have been told to stay off thyroxine to “prove” that I need to take thyroxine, which is the most ludicrous bout of non-logic I have ever heard of, and I won’t do it. If you have antibodies that come and go, of course your hormone levels are going to go up and down. If my autoimmune attack continues at the same rate, I will “prove” that I don’t need thyroxine? If my autoimmune attack abates, I will “prove” I do need it? What if my autoimmune attack abates the day after my test “proving” that I don’t need thyroxine?
I’m going to notice it if I go hypo long before my T4 goes out of range (it was twenty, near the top of the range when I was diagnosed). My TSH won’t go up in that short a time period. Instead what will happen is I will get heart arrhythmia, agonising back pain, and turn into a bit of a mentalist again, all so the endo can “DISprove” what my previous TSH has already recorded. This seems to me rather like inflicting unnecessary cruelty on a small, defenceless animal. If I am going to be up and down like a yo-yo for the rest of my life, constantly having my thyroid medication lag three months behind my actual thyroid function is never going to make me well. Rather, as diabetics were treated before home blood sugar monitoring existed (and you would be surprised to discover that doctors were vehemently opposed to home monitoring), going to the doctor once a month for a blood test is not going to be often enough. When diabetics received that level of care, they had a habit of being dead five years after diagnosis, which is a trifle inconvenient to the diabetic concerned.
I do not intend to spend one more day than necessary being ill, just so a doctor can retain his cognitive dissonance over what a good thyroid looks like on a semi-useless piece of paper, and continue to hide the fact that British endocrinologists have been failing thyroid patients for the last twenty years, (and no, I haven’t forgotten my teenage “fibromyalgia” diagnosis). Doctors keep alleging to me that it takes weeks for T4 levels to cycle up and down. I allege that I feel the changes within days, if not the next day, if my levels change. T4 tells us little about T3 production. If no one ever tests for the T3 in this country, how are we ever able to see what’s going on?
On Monday, immediately after my blood tests, I gave up gluten. I have been off gluten for little under a week, and my swollen, painful stomach has almost flattened off already, despite eating just as much food and carbs as before. On Wednesday I started to go cold. I woke up with agonising back pain and a heart beat in the fifties. I took 12.5mcg of thyroxine – a teeny tiny dose – and my back pain eased and my heart rate went up to normal. I took another 12.5mcg a few hours later, actually gave myself hyper(!) symptoms by developing a fast resting heart beat – but the back pain cleared up again within an hour of taking it. This doesn’t really make sense according to the standard view of thyroid treatment. It was definitely NOT a placebo effect. This is the first time I’ve had the back pain come back in weeks and weeks. This is going to be a very delicate balancing act indeed, though I certainly know people whose ideal is so finely balanced that 12.5mcg of thyroxine makes all the difference. My breathing problems are back. I can’t get enough oxygen. I get this when I am too low and when I am too high. It can make things confusing. Other that, I felt okay on Thursday and Friday, until today, Saturday, when again, I woke up with agonising back pain, and feeling cold. Obviously I’m also a little worked up (what do you mean, you noticed?), which tends to happen when I am hypo. It seems the attack may be abating slightly, after weeks of making me invulnerable to the freezing temperatures outside. Funny coincidence? I’m sure we’ll soon find out.
Today, my private blood test results arrived in the post.
Back in May I was given a TPO test and a generalised autoimmune test to see if my white blood cells were up to any mischief. The tests came back negative. I was puzzled by this at the time, as everything fitted with Hashimoto’s thyroiditis – the periods of recovery, of feeling good, followed by the periods of feeling awful, the attacks that seemed to come on after I had infections, the Yersinia infection in the autumn/winter of 2008, which is associated with autoimmune thyroid problems, followed swiftly by a bout of feeling incredibly good (just like this bout), followed by the crash in the Spring of 2009 that finally got me diagnosed.
Ninety five percent of Hashimoto’s patients, and something like fifty or sixty percent of Graves patients, are positive for TPO antibodies. I am not. The GP’s lab uses a threshold of 35, so although I have come back with a “normal” score according to Lab 21, according to my GP’s lab, I am just over the positive threshold.
The GP never tested me for thyroglobulin (Tg) antibodies. I’m pretty sure the endocrinologist hasn’t tested me for it either, I couldn’t see it anywhere on the order form. Yet look at that, I’m barely borderline for TPO, but my thyroglobulin antibodies appear to be having a ticker-tape parade. That is a diagnosis very nearly missed. Suddenly the £200 I spent seems worth every penny!
Imagine the consequences of a false negative in my case, to my potential future treatment by my GP and the endocrinologist. The GP has spent the last nine months belittling my problems due to a TSH that was far lower than it “should” have been, and the complete lack of a T3 test (which I suspect would be the most useful test in shedding any light on anything). I can imagine the scenario now – an apparent absence of Hashimoto’s antibodies and a likely negative Graves test because the threshold is set so high… “We can’t find anything wrong with you. We think you are just overdosed. You probably don’t need much thyroxine. Go away, stop wasting our time.” It could have taken YEARS to straighten out. This is a perfect example of why YOU NEED TO RUN ALL OF THE TESTS.
The T4 and T3 test results are interesting. When I was diagnosed hypothyroid, the GP did not test my T3, but as I mentioned, my T4 was 20. As I mentioned, T4 levels do not dictate T3 levels. This test was taken during a period when I felt reasonably well, reasonably energetic, with neither symptoms of being hyper or hypo. I believe when I was first diagnosed, and for several months after, I was not converting T4 to T3 very well. I believe this changed during November or December, as that was the point when I stopped waking with aches and pains. During the two weeks before and three weeks after Christmas, I had an incredible amount of energy, and despite the worsening eye problems and bouts of palpitations, I felt very well. Recently, I have started to feel tired again.
Meanwhile, the coeliac disease test, which did not include a full panel, but was only the most basic IgA transglutaminase test, was negative. It is possible to be gluten autoimmune without being coeliac, about 9% of coeliacs are negative for this test. Anti-gliadin (anti-gluten) antibodies would have helped to shed light on this (although would not prove the slightest thing), but alas, Lab 21 don’t do them any more, only Genova Diagnostics do them. I will wait for my endocrinology tests to come back first, as they may (might) have been included in the coeliac panel, sometimes they are, sometimes they aren’t. If they haven’t been, (aargh), I might have to eat gluten again for a few days.
So, today’s conclusions are:
- Don’t trust the “expert”, he is probably biased and has his own agenda.
- Do your own comprehensive tests, they will tell you more about your problems than your doctor’s tests.
- Don’t take no for an answer, don’t let doctors get away with false assertions.
- DON’T SWEEP IT UNDER THE RUG!
- Cheer up, it probably will happen, if not now, in six or nine months time!
So, this blog was supposed to be about food chemical intolerance, and perhaps some readers have thought I’ve gone off-topic over the last few months by talking about my thyroid diagnosis.
Far from it.
Since I’ve started having high energy days recently, I’ve been indulging in all kinds of foods that used to be off-limits to me.
Christmas consisted of eating a lot of cheese, ham, chocolate, and other high glutamate and amine foods, over several days in a row, so I guess that counts as a food trial.
I am no longer sensitive to amines and glutamates. I used to get horrible symptoms – heart palpitations and heart block, nightmares, anger, tearfulness, and a lot of pain and muscle tension. I can’t even remember all of the symptoms I used to get, because there were so many.
I’ve eaten a lot of cheese over Christmas. By this, I mean, several ounces per day, and we’re not talking fresh cheese, we’re talking vintage Cheddar, Stilton, Wensleydale, Cheshire, stuff with apricots, chillies, herbs, you name it. I’ve also eaten a great deal of chocolate – and not just Cadbury’s, but the really strong 70% dark stuff too – dates, ham, slow cooked (12 hours) pork with crackling, chicken skin, tomatoes, you name it, I’ve eaten it.
I am no longer sensitive to amines. Not even a single skipped heart beat. No neck pain, no fuzzy brain. The worst I’ve had is to remember a couple of dreams in the morning, which is actually kind of nice.
I haven’t yet done a proper salicylate trial, but I have been eating cornflakes, some bits of fruit like dates and jam, nuts, herbs, pepper, and a few root vegetables and so on. I have wondered on and off whether they might be contributing to a bit of back pain and grogginess in the morning, but I’m having a terrible time getting my thyroid dose right, so I’m reserving the proper trial for a time when my body has stopped trying to kill me.
So here’s the big news: if you are food chemical sensitive, you MUST GET YOUR THYROID CHECKED. By getting your thyroid checked, I mean:
- Free T4
- Free T3
and ALL FIVE thyroid antibody tests (for both Hashimoto’s and Graves diseases). These are:
- TPO (thyroid peroxidase antibodies)
- TG (thyroglobulin antibodies)
- TBII (thyroid binding inhibiting immunoglobulins)
- TGI (thyroid growth immunoglobulins)
- TSI (thyroid stimulating immunoglobulins)
You need ALL of these tests, because often your TSH and T4 will appear normal. Even though I had an abnormal TSH, my T4 level was near the top of the normal range! Other people have a normal TSH and are low on T4, or have normal TSH and T4, but their T3 shows up too low. Many doctors don’t even test T3, which is crazy. Even if all of your hormone tests look normal, your antibodies may tell a different story.
Even though many doctors do not consider a TSH of below 5 to be abnormal, I would suggest a cut-off of 1.5. The average healthy person has a TSH of 0.8. The Bell curve is extremely steep.
If your thyroid hormone panel turns out to be “unequivocally normal”, what you need to do is find a doctor who will consider treating you based on your symptoms rather than your blood tests. Such doctors can be found on Mary Shomon’s site. If your thyroid is normal, you would become thyrotoxic straight away from taking thyroid hormone. You should trial increasing amounts of thyroid hormone over several months, until you are thyrotoxic. Then you should go back down a dose. Then wait. It takes time for your body to heal.
It’s taken me nine or ten months to get this far, but now I’m here, I can’t tell you how incredible it is to be able to eat food again. When my thyroid has settled down, I’ll do a full salicylate trial and let you know the results.
I really should post more often. One of my New Year’s resolutions was to write every day. So far that hasn’t been happening, mainly because I can’t see very well at the moment. I’ll get to explaining that in a moment.
So the last time I posted, I had a test result I needed confirming by the doctor. I was going to do a Dr House here and ask people to guess what was wrong with me. Things changed and got in the way. My mum died and this blog became utterly unimportant to me. Instead of doing the Dr House, I’ll just explain.
I’ve been very sleepy – falling asleep whenever I sit down on the sofa. I’ve also had a lot of trouble with blurred vision and tired, bloodshot eyes. Also I’ve been peeing more than usual, and I’ve been hungry and thirsty.
I decided to dig out the blood sugar monitor I bought a few years ago when I was suffering rather badly with hypoglycaemia. The blood sugar monitor claimed I was prediabetic. I tested for several days in a row, and it still claimed I was prediabetic. I got new test strips, and the new test strips claimed I was prediabetic. So I asked the doctor to confirm with a blood test. The blood test said I was normal – right at the top of the range, but normal. So I asked for a second blood test. That also claimed I was normal. So I went out and bought a new blood sugar monitor. The new blood sugar monitor said I was normal. I guess my old blood sugar monitor was broken!
So what the heck was going on?
I was actually thyrotoxic again, despite lowering my dose. Apparently it takes a lot of thyroid hormone before my heart rate goes up, I get a raft of other mysterious symptoms first. I’ve decided that the way I know whether I’m thyrotoxic or not is if I start to get sinus pressure pain. Fortunately the sinus infection has cleared up, but I’m pretty sure the infection was caused by thyrotoxicity swelling my sinuses in the first place.
The problem is, I haven’t been able to stabilise my dose. Over the last few weeks I’ve repeatedly had to lower it. On the new dose I’m okay for a few days, then I start to feel thyrotoxic again and I have to lower it again. This has accelerated over Christmas. It seems to be associated with eating gluten, even on a daily basis, though I can’t be sure.
The last two nights I’ve been down to 50mcg of thyroxine and nothing else. This dose wasn’t even touching my symptoms six months ago. In fact, I’m toxic again today for no reason, and I’m contemplating not taking a dose at all tonight.
This has changed everything. I think the stress of Christmas, and losing my mother in early December, has taken its toll on my immune system, and I’m under autoimmune attack.
The good news is, since approaching the right dose, I’ve had a lot of high energy days. I seem to be quite a hyperactive person when my body provides me with energy. However, I’ve also had a lot of brain fog days where I’ve messed up by going either too high or too low with my dose. It’s a guessing game, and I’m playing almost blind. If ever there was a case for a home thyroid monitor, I would be it. Why don’t they exist? I’m furious that they don’t exist! I’d willingly pay £1000 for a home thyroid monitor right now!
I had a high energy day on Saturday, so I went into town to do some shopping in the January sales. While I was there, something horrible started to happen. I could feel my thyroid swelling up. I could hardly swallow or talk. When I got home, I looked in the mirror and I could actually see my thyroid – the butterfly shape of it was distinct in my throat. Today I’ve been thyrotoxic again. My eyes are hurting, dry and blurry, I’m a little short of breath, and I have pressure pain in my sinuses.
The thing is, I’ve had these symptoms before. I’m not talking about this year, I’m talking about, for YEARS. I’ve always put the random lump in throat symptom down to “anxiety/low blood sugar”, the eye symptoms down to “perhaps I have a slight eye infection”, the shortness of breath down to “asthma” and the sinus pressure pain and grogginess down to “perhaps I have a cold.” It’s quite disturbing to realise how long this has been going on, and I have always dismissed the symptoms as an infection or something unimportant.
Looking at my symptoms, I’m worried that I may have thyroid eye disease. If this is so, it’s rather important to get it diagnosed and under control (ironically with steroids), as it’s autoimmune and can destroy your sight. I’m not terribly happy about this possibility. Sight is the one sense I really need in order to become that famous author I’ve always wanted to be, and I don’t know what I’d do without it.
It’s also possible – probable I think – that I have hashitoxicosis. I may be under a very strong Hashimoto’s attack, or I may have a combination of Hashimoto’s and Graves disease autoantibodies, causing periods of hypo- and hyper- thyroid symptoms.
Right now I don’t have any other explanation for what is happening with me other than autoimmunity. I was convinced from the start that this was autoimmune because of my crazy up-and-down health history.
Yeah, I know how important vitamin D is for autoimmunity, and I’ve been sitting in front of my UVB light every day or every other day.
I’m going to the doctor again, hopefully tomorrow, to ask for a full autoimmune thyroid panel. I only had TPO checked last time (Why? I was even tested for lupus, but not a full thyroid antibody panel!). I’m pretty sure that at the time of testing, I was withdrawing from an autoimmune attack, and that’s why I didn’t test positive for antibodies, and why I was becoming increasingly hypo after feeling very good – unusually good – over the winter after catching the dreaded Yersinia. Oh yeah, and this has started happening since I started eating gluten again.
I have some good news on the food chemical intolerance front. I’ll save it for its own post in a moment…
So, where were we?
Oh yeah, I thought my adrenal glands were on their way out. Well, guess what? They’re not. The reason I’m still unwell is a combination of three different medical conditions, two of which I’ll tell you about, and the other of which I’ll ruminate on, as it hasn’t yet sunk in.
Remember me pleading with my GP for a series of tests? I asked for cortisol, B12, folate, vitamin D, magnesium, calcium, copper and zinc. I got cortisol, after a long drawn out battle. The rest of the tests were apparently not required. The cortisol came back okay, but due to the circumstances of the test, I thought it might be a false negative, as it’s notoriously hard to catch adrenal problems in the act.
So I went to a private GP in Sheffield and paid around £500 of my own money. I got a whole series of tests done, the ones above, plus ones for progesterone, oestrogen, DHEA, testosterone, and thyroid hormones.
I was pretty disheartened when the results came back. Everything was normal, according to the phone conversation. I actually delayed going to collect the test results for a few days. When I arrived, it turned out that not all of the tests had been done. They had forgotten to do the thyroid tests. This was unfortunate, as I had put a natural desiccated thyroid (NDT) tablet (Westhroid, I’ve stopped taking Armour) under my tongue about twenty minutes before, and the last few grains were left in my mouth. Had I been thinking straight at the time, I would have refused the test and come back the next day, but I wasn’t thinking straight, I was in a haze.
While my blood was being drawn, I leafed through the results of my other tests. I noticed that folate was missing – the dear sweet old doctor had accidentally asked for follicle stimulating hormone by mistake, since I was having sex hormone tests done. I asked about the missing test, and learned it would cost me another £50 to have it done. I was so disheartened by how GREAT all my test results looked that I almost didn’t bother to have it done. But I did, thank goodness.
Taking a closer look at my test results at home showed everything in range – my cortisol was around 300 again (the normal range is about 100-800), and this time I hadn’t been nervous when the test was taken. So I guess that either the saliva test was wrong, or it reflected the situation at the time – and as Dr S believes, my adrenal function picked up as my thyroid function picked up.
My progesterone is a little on the low side – it’s normal, but low. This might be something I investigate further in the future, but it isn’t my priority at the moment.
All of my nutritional tests looked really great or good. Copper, zinc, calcium and magnesium were right at the top of the range, and B12 and vitamin D were mid/low range. Considering I had been to Mallorca on holiday only a month before the vitamin D test, I was disappointed. The B12 was disappointing too, as I’ve been taking pretty large (250mcg) doses of B12 for six or seven months now (small by some people’s standards, but any more than that and I start getting hypnic jerks).
I suspect that before I began supplementing my B12 must have been quite low, as I had many acute symptoms – such as the annoying dysautonomia – being able to feel my heart beat – was something that cleared up shortly after I began taking B12.
This second round of tests I got back were very revealing. Firstly, my thyroid test came back totally screwed up. You aren’t supposed to take a tablet on the same day as your test, and I had taken two, with one that had dissolved straight into my bloodstream from under my tongue only a few minutes before the test.
The thyroid test looked like this:
Thyroid Stimulating Hormone: * 0.01 mIU/L (lab’s range: 0.27-4.20)
Free Thyroxine: * 42.3 pmol/L (lab’s range: 12.0-22.0)
Free T3: * 11.7 pmol/L (lab’s range: 4.0-6.8)
Those are cracking levels, aren’t they? I wasn’t amused at the time, but I find it quite funny now!
Though the test result made me look like I was about to die of a heart attack, I think I might have been just a little teeny tiny bit thyrotoxic – not a huge amount, but a little.
The folate test looked like this:
Folate (serum): 3.3 ug/L (lab’s range: 2.3-17.6)
It was just inside the lab’s range, but when I had a look online, it turns out that their low is quite low, other labs set the cut off to 2.7, 3.0 and 3.5. So, by some labs’ definitions, folate deficient, by others, not. Folate deficiency can give you pernicious anaemia. It isn’t very nice at all.
I don’t get on with folate, or I didn’t. It used to make me manic and then give me brain fog. I used to need more and more of it to feel normal. It was like the worst drug in the world. I suspect now that the reason I had this reaction to folate, is because I was B12 deficient, and folate and B12 both use each other up. You aren’t supposed to take folate without taking B12, because B12 deficiency is very serious.
Having had a lot of problems breathing, having become more and more tired, yet suffering from chronic insomnia, and if I’m honest, suicidal depression, and having the sensation of feeling my own heart beat return, I decided to risk taking folate.
My reaction to folate has completely changed. I basically went from being exhausted, groggy, insomniac, depressed and feeling my heart beating one day, to being awake, not feeling my heart beat, and sleeping well the next day. No manic feelings, no brain fog, no worsening of symptoms. I think that my B12 levels are high enough, and my thyroid hormone is also high enough now that I can handle folate: the only thing I do get from a VERY large dose (e.g. over 1000mcg) is a little rashiness sometimes.
What was really shocking was that as soon as I started taking the folate I suddenly started getting symptoms of thyrotoxicity. I got what is called a thyroid “dump”. Folate, B12, magnesium, vitamin D, zinc, copper and iron are required to push thyroid hormones into cells. If you can’t push thyroid hormones into your cells, they build up in your blood and you get crazy blood test results like mine. I didn’t even know this was possible – it is in fact just theory – a thyroid dump reaction is known to happen to people with low cortisol levels when they start supplementing hydrocortisone. Apparently it appears to be the case with me too.
By this time I was taking 2 grains of NDT and 75mcg of thyroxine, and it didn’t seem to be having any effect – until I started taking the folate. I was still ill from folate deficiency – tired, short of breath and so on – but now I had a heart beat that at resting was around 95-100bpm and when I had to walk anywhere (and by walk, I mean a gentle stroll), well, I was doing up to 170bpm – possibly more, but I was too scared to actually take my pulse!
I basically had to stop taking NDT for a day. I felt absolutely fantastic that whole day, then I started to get my hypo back pain symptoms back when I woke the following morning. I resumed at a lower level of 1.5 grains NDT and 75mcg thyroxine. I learned I couldn’t take my folate pill near my thyroid pill, or off I’d go with a crazy pulse again! I had a fast heart beat (I can’t really call 95bpm palpitations) on and off for a couple of weeks, but I think it’s pretty much settled down now – after another dose shift, of 1.25 grains NDT and 100mcg thyroxine (see what I did there…?).
I went to see Dr S about my test results. He was astonished by my thyroid results and wouldn’t accept them. “But this means the blood test can be totally disrupted!” he exclaimed. He sent a letter to my GP, asking for new tests after three weeks for folate and thyroid, including RBC this time, though if I was slightly anaemic, I think after three weeks of folate, what was borderline will no longer show.
So, I’m a little (lot!) pissed off with the GP because I’ve had to spend all of this money when by rights I should have been able to get all these tests on the NHS, but I’m also feeling pretty confident, because I know how to use this situation against them now. Let’s hope they will be more cooperative next time.
In addition to all of this going on, I’ve been suffering from sinusitis. When I first started getting dizzy after I mucked with my thyroid meds back in September, I was terrified my adrenals were going down the pan. It turns out that taking NDT is playing havoc with my sinuses – on the day I upped my dose to 1 grain and I started to get really dizzy… It was a very stealthy sinus infection! I had no pain or pressure or other infection symptoms apart from tiredness and shakiness, which could have been anything! I think the reason I got the feeling like I was going to black out every time I stood up, was because my blood pressure was too low as a result of stopping the T4. Possibly the infection and the change in dose was putting a strain on my adrenals too. Whatever was going on back at the start of all of this, I’m pretty sure my adrenals are okay now.
It was weeks before I finally got pressure pain in my nose, and what a relief that was! I can’t convey to you the “OMG it’s a sinus infection!” moment. The sinus infection has been going on for three months now. I can’t shake it. I’ve tried OTC remedies, four rounds of antibiotics – which are keeping it at bay but not killing it – the difference between me on antibiotics and me off antibiotics is the difference between alive and dead. I’ve tried steroid nasal spray – which spread the infection over the course of three days until it moved right down into my cheeks – I’ve tried two courses of amoxicillin clavulanate, followed by two courses of doxycycline back to back, which I’m just about to finish, and the damned infection is still there. I’ve tried steam inhalation, I’ve tried neti pots… The good news is that all of those antibiotics plus a great deal (too much?) thyroid hormone have finally killed off the eczema on my face, and I look as fresh as a daisy! Pity I don’t feel like one!
I’m off for those three-week blood tests in a few days time, plus I’ll be begging for a referral to an ENT who will hopefully look up my nose and discover I have polyps in my sinus cavity or a deviated septum or some other reason why I can’t drain the infection, since I’ve had problems breathing through my nose for a long time.
I don’t know WHAT the thyroid test will say, because I currently feel both under and over. On the 100bpm inducing dose I was on, I felt extremely tolerant of foods and got adventurous (by this I mean eating junk food), started trying all sorts of things (junk) without getting symptoms the next day. However, I was a bit mental – emotionally volatile again. When I lowered the dose to slow my heart beat down, my food intolerance symptoms and pain came back. I had a crazy drunk-person reaction to some smoked salmon!
I still have quite a few symptoms – but I do feel a lot more energetic than before. I’ve been able to do some DIY around the house. My (rather strange) yardstick for getting better was this: if I’m up to decorating the house, I’m well again. I’m not quite up to decorating yet, but I’ve certainly done a few big butch DIY tasks – though I have to sit down and have an asthma attack and a heart attack after any heavy lifting!
Probably the most annoying symptom I still have is with problems breathing. This symptom has been coming and going, and responds to thyroid dose changes, B12, folate, and quite possibly has something to do with this damned sinus infection that’s making me feel so unwell.
Then of course, there’s the other problem. I did another test this week, and I still can’t quite believe the results. No, I’m not pregnant, it’s not a good news test at all! I’m not going to say what it is yet. I’ll post my symptoms once I’ve been to see the doctor, and you can do your Dr House impression on me again. Until then, au revoir…
Actually, while I’m still here, Mary Shomon has just posted a link to a virology paper on thyroiditis. I’m very interested in this topic, because I think this is what happened to me.
Viral infections are frequently cited as a major environmental factor involved in subacute thyroiditis and autoimmune thyroid diseases [...]
First defined by De Quervain, subacute thyroiditis is a self-limited inflammatory disorder of the thyroid gland. The disease is most prevalent in females, usually characterized by a sudden onset of neck pain and thyrotoxicosis. Clinically the disease has several characteristics typical of viral infections including a typical viral prodrome with myalgias, malaise and fatigue. [...]
The first descriptions showed a tendency for the disease to follow upper respiratory tract infections or sore throats, which explained why a viral infection has most often been implicated as the cause. Clusters of the disease have been reported during outbreaks of viral infection. Onset of the disease are observed between June and September and this seasonal distribution is almost identical to that of established infections due to some enteroviruses (Echovirus, Coxsackievirus A and B), suggesting that enterovirus infections might be responsible for a large proportion of cases.
An association between subacute thyroiditis and HLA B35 is noted in all ethnic groups tested  and two-thirds of patients manifest HLA-B35. Familial occurrence of subacute thyroiditis  and recurrence during the course of time  are associated with HLA B35. Thus, the onset of subacute thyroiditis is genetically influenced and it appears that subacute thyroiditis might occur through a susceptibility to viral infection in genetically predisposed individuals. [...]
Virus-like particles were first demonstrated in the follicular epithelium of a patient suffering from subacute thyroiditis. Judging from the size, it was thought to be influenza or mumps virus , which was concordant with an increased frequency of antibodies to the influenza B virus in patients with thyrotoxicosis [...]
Some cases could be due to the mumps virus. Subacute thyroiditis has occurred in epidemic form: patients with subacute thyroiditis diagnosed during a mumps epidemic were found to have circulating anti-mumps antibodies even without clinical evidence of mumps [...]
Enteroviruses have been suspected. Patients with subacute thyroiditis, who had no clinical evidence of viral disease, demonstrated increases by at least four times in viral antibodies. These viral antibodies included antibodies to mumps virus, but also coxsackie, adenovirus and influenzae. Coxsackie viral antibodies were the most commonly found, and the changes in their titers most closely approximated the course of the disease [...]
I won’t quote the whole paper. Theory A is that I’m one of those HLA B35 people, and that I was hit like this:
1. Influenza at age 13 (diagnosed “fibromyalgia”)
2. Withdrawal from the Pill at age 26
3. Major stress of DVT and use of warfarin at age 26 (adrenal?)
2. Adenovirus in France at age 28 (laughed at by doctor when I requested hormone tests)
3. Yersinia at age 32 (a bacterial infection associated with autoimmune thyroiditis)
I *hope* to hell that I had an adenovirus in France, and not cocksackievirus, because cocksackie can damage the heart, pancreas and liver. Though it would explain a lot.
Theory B is that I am autoimmune, but it hasn’t been detected – which would also explain a few things. To make matters as confusing as they should be, the paper goes on to say, “Unknown autoantibodies are found in patients with subacute thyroiditis, and a higher prevalence of thyroid autoantibodies after a mean follow-up interval of 4 years but at low titers has been observed.”
In other words, non-autoimmune thyroiditis may also be autoimmune thyroiditis on a subtle level. We may be talking about a grey scale of autoimmunity here.
Another point of interest is that the HLA B35 genotype seems particularly susceptible to AIDs. Some scientists have even theorised that a percentage of Europeans have an inherent resistance to AIDs because they inherited a polymorphism from ancestors who survived the Black Death. I guess I’m pretty lucky not to be born in Medieval times, because I would have been buboed up to my armpits and dropped like a fly.
I thought I’d better check in so that everyone knows I haven’t died or something!
There really isn’t much news to tell. I was really suffering when I wrote the last post, but since I’m no longer under stress, I’ve slowly started to feel better. I still feel much worse than I did over the summer, but I’m heading in the right direction again.
My GP seems intent on making my life as difficult as possible. After much faff, I finally got my cortisol levels tested. Unfortunately the test has to take place in the morning, and I feel fine in the morning, I get ill in the afternoons. It’s a fasting test and it’s supposed to be taken at 9:00am. I couldn’t get an appointment until 10:00am, and then had to wait for fifty minutes, so I had my blood taken just before 11:00am, by which time I had gone through hypoglycaemia and out the other side, and I was so nervous I could feel my adrenal glands releasing adrenaline. So I got a fasting cortisol level of 337. The “normal” range is 85-800-and-something. The UK Addison’s Disease site says in this PDF:
The diagnosis is highly likely if 9am cortisol is less than 100nmol/L – unless the patient is already on oral or inhaled steroids.
The diagnosis is unlikely if cortisol is greater than 400 nmol/L – but not excluded if the patient is acutely unwell at the time.
For values between 100 and 400 nmol/L the diagnosis can only be excluded by a short Synacthen test (ACTH stimulation test). Patients in the early stages of disease may have 9am cortisol values towards the top of this range.
A fasting cortisol test frequently misses Addison’s disease, and I’m not far gone enough to get picked up by it in any case, as my cortisol is normal in the morning, too low in the afternoon, and goes too high at night. According to the GP and my specialist Dr S (who does not treat adrenal problems diagnosed by the saliva test I’ve had done that shows the problem), my blood levels are “normal”. Yeah, they were at the time, but they weren’t a few hours later, I can tell you now!
This post is just going to be one long gripe about my GP…
I haven’t had any of the other tests done that I need, like B12, folate, and etc, because of the pigheaded GP, who keeps beating me about the head with the “go see an endocrinologist” stick, and refuses to take any responsibility for my care.
I came down with a cold last week, and on top of everything else I was really ill. I made another appointment to try to address the cold, the specialists, the tests, etc. I was going to go in the car because I was so tired I didn’t think I’d be able to manage the 10 minute walk. When I got out of the house I had another dizzy spell and realised there was no way I trusted myself to drive, so I had to walk, and it was a struggle. I was four minutes late for the appointment. I didn’t think this would be a big deal, since every time I’ve ever been for an appointment at that practice I’ve been kept waiting for at least 10 minutes, and an average of about 30 minutes. But when I arrived, the receptionist told me I was late and refused to let me see the doctor. I was given the option of waiting for several hours until someone else missed their appointment. WTF? They couldn’t squeeze me in, even though they were on time with all their appointments for once? I hate these bureaucrats.
So I went home shedding tears of frustration again, for the third? fourth? time with that practice in the last month.
They are really being incredible cowards – because of my cold, I sent in a repeat prescription request for an asthma inhaler. I’ve had asthma since I was about five, and I end up requesting a new inhaler every couple of years when I get hit by a nasty chest cold. I was actually too ill to go and collect the prescription, but I finally went yesterday, only to discover that the repeat prescription request had been refused too, I have to go and request it in person! Good grief, they’re really intent on making my life difficult.
At this point I decided to wallow and do nothing until I got well again, and I spent some time thinking through my options. The NHS only diagnose adrenal problems when they are about to kill you, not when they start giving you symptoms. The other problem is, I’m actually afraid to have a cortisol/ACTH stimulation test, because I’ve seen what it does to other thyroid patients. On a forum where I lurk, I’ve read posts about how people have passed the test but have been practically disabled for days or weeks afterwards as they have used up all of their adrenal reserve. Having passed the test with flying colours, they are then in a position of total confusion – being told there is nothing wrong when there clearly is something wrong, and only putting two and two together when they share their experience with others.
I’m tired of being exhausted and weak and shaky and faint during the afternoons, and then feeling either well, or hyped and overstimulated at night. I was afraid to treat myself with hydrocortisone because the first time I tried it, I used HC cream, and I think I managed to overdose and trigger a mini adrenal crisis a couple of days afterwards. Even though I had a tube of cream, I was too afraid to use it all the time I was really ill when I was on holiday in Spain. I dragged myself along, zombie-like, to a writer’s convention a couple of weeks ago, and I eventually plucked up the courage to try using some again while I was there. After realising I was going to miss most of the convention due to dizziness and faintness, I assumed a frack-it attitude and cautiously used some, with impressive results – within ten or twenty minutes I was no longer faint and had a lot more energy.
So yes, I’ve taken things into my own hands and ordered some hydrocortisone tablets off the internet. You can actually buy tiny doses from chemists without prescription in the form of Corlan tabs – 2.5mg tablets of hydrocortisone, used for treating mouth ulcers. If you want higher doses, you can order items from the states perfectly legally, without a prescription.
I’ve also ordered some pregnenolone and adrenal cortex extract, which I await eagerly. I’m going to take the soft route, rather than just dosing up on hydrocortisone – I’m basically going to take a small amount of pregnenolone in the mornings, and then use small doses of hydrocortisone as and when I need them. I’m not going to sledgehammer up to a full dose of 25mg per day as I don’t think I need it. I’ve already started using the Corlan tabs – only one or two a day, and they do make me feel less shaky, though I certainly need a higher dose. Because I’m okay first thing in the morning and last thing at night, I’m taking the tablets with my lunch. It’s very much a matter of taking what I need when I need it, but I don’t think I will ever go higher than 7.5mgs, I just need something to cover my weak spot in the afternoons. I’m also taking biotin because it helps to convert pregnenolone into the other adrenal hormones. I wonder about this – I’ve tried taking biotin before and noticed a difference. I’m sure it’s made a big difference to how I feel over the last couple of days. Today, though I was still weak, I wasn’t shaky for the first time in ages.
I’ve also continued to increase my Armour thyroid dosage. Dr S is of the opinion that adrenal problems usually resolve once the patient is on enough thyroid medication. I’m of the opinion that I don’t want to wait that long or suffer every time I up my dose (which usually wipes me out for a day). I’m a lot more comfortable with increasing my dosage now I have some hydrocortisone tablets in the house. I feel like I need to be taking a lot more than I’m on already, and it’s difficult not to be impatient. After feeling wiped out, I usually get an energy rush the day after I increase, which then fades away again.
Actually, the Armour thyroid crisis has just hit me, I’m almost out of 1/2 grain tablets. I’ve had to buy a pill splitter online and start splitting the Westhroid 1 grain tablets I have. New formulation Armour tablets just crumble. When stocks are available I think I’ll probably just move over fully to Nature-throid, as RLC Labs, who make Westhroid and Nature-throid are consistent in their formulation, unlike Forest Labs, who keep changing their formula for Armour and causing endless potency fluctuations, a nightmare for thyroid patients.
I’ve also discovered that I can help to avoid that wipe-out effect when I up my dose by upping in teeny tiny increments with crumbled bits of tablet. Perhaps I should just up my dose by 1/8th of a grain every week – surely that’s less traumatic for my body!
I’ve found a private GP in Sheffield who will give me the blood tests I need to have done. This is going to cost me somewhere in the region of £500-600, but I don’t see that I have any choice at the moment. I should by rights be getting these done on the NHS, but I think my only other option would be to change GPs, which would just be another can of worms. I really don’t know if anything will show up, but if something does show up, I will be making my way back to the GP brandishing my test results and wearing a very angry face! (Probably demanding B12 shots!) I’ll be getting a selection of relevant vitamins and minerals tested, plus my sex and adrenal hormones, plus I think I’ll get a T3 and T4 level. I’m expecting my T3 to be below range rather than my T4. I won’t be having those tests done until next week though, as the GP in question has gone on his hols.
That’s about it for now, other than to say thank you for the kind comments and words of sympathy people have made, and I’m really sorry for not replying yet – you know what I’m like – when I’m in my shell, I’m in my shell. But I know that one day soon all of this ADD and Asperger’s syndrome and bipolar syndrome will all just fade away.