Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

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There are some unspoken social rules you shouldn’t break. I have a habit of breaking them. For example, you shouldn’t call a guy you’re interested in too soon after going on a date. You definitely shouldn’t go back to the doctors two days before your test results are due, in order to beg for thyroxine.

I did.

This was brought on by a very bad night, in which I had really severe pain in my old DVT leg (I had been hobbling all day), and despite the fact that it isn’t swelling, I really started to wonder if it was clotting. I was in so much pain and so sleepless that I got really miserable and panicked, and I decided that just for my own peace of mind I needed to go back, get the prescription, and get the doc to check my leg.

It turned out that most of my blood test results were already in, and yey! I don’t have any antithyroid antibodies. Thank goodness for that.

Of course, having had all of three hours sleep, being freezing cold, and having a very painful leg, I didn’t really come across very well to the doctor. I was visibly shaking with cold and fatigue, but I think the doc thought it was nerves. Of course she couldn’t find anything obviously wrong with my leg to suggest a clot. She probably thinks I’m a fruitcake now. I do have social anxiety issues, and I do get very nervous and emotional around authority figures like doctors. This makes it quite hard to come across as rational and believable.

She put my insomnia and depression down to… well, “depression”. I knew this would happen, but it really isn’t the whole story. I had the insomnia way before I was depressed. Crying has mainly been triggered by frustration at not knowing what is going wrong with me and having to wait days before I can fix it when it’s interfering with everything I do. But there are plenty of times I’ve had awful mystery symptoms and I haven’t got depressed about it. I’m usually quite a buoyant, calm person since being on failsafe. Crying is a very rare reaction for me, and I hardly ever experience “depression” in this way. Usually, when I’ve been depressed in the past, it’s a bipolar/cyclothymia-like depression and I’m very groggy in the mornings and I just want to stay in bed and sleep. Regular common-all-garden depression is associated with the inverse, insomnia, but as I say, I had insomnia a long time before I was miserable.

I explained to the doc that I have attention deficit problems and I have become extremely forgetful, and she also blamed this on depression. She thinks my thyroid levels are too normal to be experiencing such extreme symptoms. This is very frustrating. I’m not the owner of a regular cookie-cutter body, and very small changes can have very big effects on me. I don’t think I’m going to get much joy trying to talk to a regular doctor about my attention deficit problems. Doctors are just people, not psychiatrists, and they tend to rationalise emotional states in terms of feelings and attitudes rather than consider organic causes. I think the more I complain about mental symptoms, the more I’m going to be written off as “just depressed”, rather than there being a feedback interaction with something  that is biochemically wrong. So I’ll have to keep my mouth zipped.

That’s not to say this whole thing hasn’t been getting to me for psychological reasons as well as physical ones. I’ve been fighting my body for so long now that I would really like a break. Having a chronic illness is enough to make anyone depressed, but having one that your doctor doesn’t even recognise makes life very difficult. In a way, Hashimoto’s would have given me an easy way out, because there’s no ambiguity, and it’s a very simple explanation for a very complex problem. At least it’s something I could get treated for. I wouldn’t wish it on my worst enemy though. But for the grace of God, as they say.

I have no idea whether these thyroid pills are going to reduce my food intolerance issues. I can’t wait to find out. If they do, I’m in a bit of a catch 22 as I’m only borderline hypothyroid (my T4 is scraping the normal range, my TSH is definitely too high). The dose I’ve been given is very small, only 25 mcg, whereas I think a full dose for a shot thyroid would be 150 mcg. The doc only wants me to stay on them for a month, and then retest my thyroid, and if it’s normal, she’ll take me off them again. So my fear is, what if I’m one of those people for whom “normal” is too low? What if I do experience improvement, but I can’t convince the doc to keep me on them? I guess I’m over-thinking things too far in advance, but it’s the kind of luck I seem to have with the medical institution!

The doctor thinks I have acute hypothyroidism because I’ve been dieting. I think this is termed “Euthyroid Sick Syndrome“. It can be caused by several things, including liver and kidney dysfunction, diabetic ketoacidosis, fasting and starvation. According to all the sources I’ve found, if this were true, I should not have elevated TSH, I should have normal or low TSH. So this theory does not add up. My results actually resemble subclinical hypothyroidism.

I have not been fasting or starving myself, let me make that clear. I’m a very sensible person. I have been eating at least 1,200 calories a day, which is exactly right for my height and weight to experience normal weight loss of one pound per week. I’ve only been dieting for maybe 3-4 months now. I’ve lost much less than one pound per week, only eight pounds in total. This depressed metabolism/easy weight gain/difficult weight loss issue has been going on for years, and it sounds awfully like low thyroid function to me! It actually seems like a miracle that I have been able to lose weight at all, something that I attribute to an increased calcium consumption, which seems to have helped my amine-reaction weight gain issues quite a bit.

I haven’t even been doing a ketogenic diet. I’ve been getting at least sixty grams of carbohydrate and sixty five grams of protein per day. It’s normally impossible for me to lose weight with carbohydrate levels that high, and carbohydrates actually stimulate the thyroid. My nutrition is good, I’m not really deficient in anything, I’m not getting too much of anything, I’m not particularly out of whack on any important mineral ratios, apart from having a high calcium to magnesium ratio, as magnesium and/or a lack of calcium makes me feel much worse. Dieting has had a balancing effect on my mental and emotional state. I’ve felt very good, I’ve got tons of work done, I’ve completed long-standing projects and experienced increased levels of concentration.

I didn’t significantly change my diet when I started dieting, I just reduced everything. I only started dieting because I lost my appetite. I have no idea why I lost my appetite. It just went away. It’s very unusual of me not to have an appetite. I didn’t really question it at the time, just viewed it as some sort of little miracle I could take advantage of. It was a case of, one day, I wasn’t hungry, so I didn’t eat as much as normal, and that continued.

Doing a regular weight loss diet for three to four months should not give me hypothyroidism! This is insane!

So where am I now? Well, I’m very relieved to know that I don’t have an autoimmune condition, I’m frustrated that I don’t have a clear result and a clear way forward (just YET MORE experiments), and I’m hopeful that thyroxine might help my bigger food intolerance problems. Before I went failsafe, I had classic reactive hypoglycaemia for years, another symptom known to be connected to low thyroid function. Last night I was thinking about all the foods I would like to have back in my diet: cheddar cheese, bacon, regular cow’s milk and yoghurt, bacon (did I say bacon?), baked beans on toast, chicken skin, prawns, coffee, porridge, nuts… I’d love to be able to eat out without fear of getting a migraine or a breakout of eczema. I don’t ask for much. Just what other people take for granted.

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Written by alienrobotgirl

19 May, 2009 at 11:35 pm

Posted in Thyroid

6 Responses

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  1. In all likelihood, and as you suspect, you’re probably suffering from a mild mood disorder. As you know, the standard treatment for mood disorders is mood stabilizers. However, I think the neuroprotective benefits might be outweighed by the mild cognitive impairment that would come with this approach. But, perhaps a small dose might mitigate this problem.

    Although the neuroprotective benefits of your diet are empirically supported (I’ve adopted most of your dietary suggestions), I’m not sure if it’s more effective than the pharmacological alternatives. Without medication, you face the heightened risk of glutamate induced neuron death, neurogenesis retardation, brain atrophy, etc. Since I’m still dubious about anticonvulsants, I think Namenda (memantine) might provide you with the protection that you need, and lead to a marked improvement in your well-being.

    I would hate to sound like a follower of orthomolecular medicine, but you might want to have your histamine levels checked. Histamine activates both acetylcholine and glutamate receptors. Elevated levels of these neurotransmitters can lead to a number of the symptoms that you previously described: impaired concentration, anxiety, mood instability, and depression. If that is indeed the case, Namenda or Lamictal might be your best bets.

    In order to expedite your recovery, you should probably consider some other pharmacological approaches. For some people, a small dose of a serotonergic drug sometimes augments the anti-depressant actions of Namenda. In addition, such drugs have the added benefit of being anti-cholinergic. And, you could try adding Strattera, which not only improves concentration, but also has anti-psychotic properties. Some dopamine agonists hold some promise, but they can induce hypomania in patients with mood instability. Finally, there are some supplements you might consider, but given your skepticism of the effectiveness of most supplements, I’m reluctant to offer suggestions.

    Although your physical symptoms are your primary concern, I think some (if not all) of your symptoms are due to some sort of neurochemical imbalance, but that’s another discussion. I think it’s best to start with the psychological symptoms, and go from there. Trust me, I’ve been there. The striking similarity in our symptoms is what initially attracted me to your blog.

    If you have any questions, you can contact me at [email address removed for privacy].

    beroul82

    20 May, 2009 at 8:20 pm

  2. I hear you on the reluctance to share with the doc. Been there, learned to not do that.

    If you haven’t checked out Mary Shoman’s thyroid about.com top docs list, you should. There might be UK docs listed. When I couldn’t get good treatment with the primary care docs in my HMO (I’m in the US), after reading several books with a variety of perspectives on thyroid conditions and treatment, I went to a private doc on the patient nominated “top docs list”, which happened to be near my hometown (was on the other coast from where I live, so my annual visits “back home” made an annual office visit feasible, with labs drawn locally, results faxed, and telephone appts in between). I paid out of pocket and it was worth every penny for the improvement to my life. I saw this doctor for two years while I considered options more local to me.

    The degree your TSH is abnormal is sort of irrelevant in terms of your symptoms, something most docs just don’t get. Numbers don’t match up to symptoms in a neat way, no matter what they tell you. I and many other diagnosed hypothyroid people only feel even close to “normal” if my TSH is below 1.0 and my free T4 and T3 are high in the ref range (hardly anyone doesn’t looks at the numbers as a primary treatment monitoring method).

    I didn’t feel “quite right” and was infertile with lots of hypothyroid symptoms for more than 10 years when my TSH was between 2.5 and 3.0. Once it went over 3.0, everything slid down hill (I only know the TSH history because I got a copy of my records of 10 years in that HMO system with health care and infertility testing, but it was always dismissed as “normal”. By the time TSH was over 4.0, I was well aware of my thyroid probably being the cause, but my doc said it had to be over 5.5 to be abnormal enough and treatable (as she got out her Rx pad to write scripts for all the symptoms).

    In desperation, I chose a new primary doc who agreed with me that a trial of thyroxine was in order due to the rising trend (2.6->4.6) in my TSH over the previous three years. She Rxd only 50 mcg a day for a month, basically a pediatric dose. Within a week I was not freezing cold any more and slept a bit better, so it clearly helped with some of my physiological functioning, BUT, and this is a huge BUT, I could feel that too-small dose wear off every day — I got a sore throat and I crashed physically and emotionally every mid-afternoon, right when I needed to be in good form for when my son (our only child) came home from school and needed my attention – BUT I craved a nap or to lay down to rest and was extremely irritated at the slightest thing that diverted that pursuit. I called the doc after two weeks and she said I had to give it the full month to take effect, then do another blood test.

    Well, one month later with some improvement in physical symptions – less PMS breast tenderness, a resolution of low body temp, and some better sleep. But the mid afternoon crashes continued, which were unbearable both because of how I felt and because of how hard it was to be a good mother and wife. She was very happy with my TSH at 1.1 and that was that. Any further symptoms were due to something else, she said. Because of the sore throats (different from those of colds and strep) that came daily midafternoon and were gone in the morning), she ran expensive allergy tests (my insurance paid for it, but I think they were entirely unnecessary, and of course, all were negative) and also free testosterone levels, which were very low (undetectable, actually). She offered Rx for anti-depressants and testosterone supplemention (which she admitted, she didn’t really understand well).

    About this time I had read up enough to more encouraged and assertive. I decided not to take the anti-depressant samples she gave me and figured she didn’t seem to know enough about hormone supplementation for me to allow her to monkey with my sex hormones (though I didn’t doubt my free testosterone was low and might need a bit of tinkering). So I kept looking for another doctor – anti-depressants would always be available if I wanted them and determined they were truly appropriate.

    I went to a private family doc locally (rec by a friend) who gave me a higher dose of T4 to try – I think 125 or 150 mcg. That turned out to be a bit too high, but I felt much, much better within a few weeks with resolution of afternoon problems. Mainly the “mental fog” continued and some very subtle things. But I really wanted to see a doc who focussed on hypothyroid conditions by this time, so I kept looking.

    By that time I had an appt with the doc on the other side of the country and I felt like I had at last found a good doctor. he met with me an hour and took an extensive history. He treats with T4 in only the 50 mcg tablets because they have no dyes and are less likely to cause problems. Patients take the number needed to get the right dose, and that might mean 2 tabs on MWF and 1 tab on the remaining days, because T4 has a long half-life in the body so day-to-day diffs aren’t so critical (also why it takes weeks to see how the treatment is going). He also finds his New England patients often need a tweaking up of T4 dose in the fall/winter and down in the spring/summer, which I also found to be the case, despite my So Cal location. I’m pretty sure the seasonal variation might be Vit D and/or circadian rhythm related to length of daylight, because my records shows I called him the same week two years in a row in the fall to report recurrence of some symptoms (sore throat, sleep, apnea

    He also Rx a compounded timed-release natural thyroid extract in a particular amount, to give a particular ratio of T3 (2%) with the T4 (98%). It gave a huge improvement in the mental fog symptoms. Later he added T2 to the compounded mix, which I think also benefitted mental function. This doctor feels that the porcine ratio of 80% T4 to 20% T3 is not quite for human physiology and that over time, the Armour or straight natural thyroid extract didn’t work as well as his ratio. I don’t know, having never taken straight natural thyroid extract, but I do know that his regime was the best combo for me. Anytime I had an issue I could call and between telephone appts, along with my blood draws from a local lab were sufficient for monitoring.

    Lots of symptoms I had never connected to the thyroid resolved – middle of the night coughing fits that were actually sleep apnea – despite my normal weight and closed mouth breathing habit; yawning while reading aloud to my son, for example. If I need a seasonal dose adjustment, these come back.

    But he was across the country and I had different travel plans and financial obligations last year so it was difficult to get over to see him (law won’t allow prescribing without a physical exam at least once a year). Plus, at age 70, I knew it would be a matter of time before he retired, though he was very active in his practice and not planning to do so soon. But still, I felt like I needed to find a good doc closer to home before too long so I started looking so I could transition.

    So I went to see an endocrinologist in my HMO system that I was seeing for monitoring of hyperglycemia (impaired glucose tolerance), but he also had an interest in thyroid conditions. This endo is very conventional, BUT (like the primary care docs in the same system) he didn’t doubt my need for thyroid hormone supplementation, and he even went along with my unusual request for only the 50 mcg tabs of the brand I was using (not the major brand Synthroid, nor the highly variable generics) as well as the schedule of 2 tablets some days and 1 on others, with a 1 tablet addition per week during the fall/winter months. He is a strictly by the lab numbers doc, and the appts are rushed, but he does understand that most hypothyroid patients do best with a TSH below 1.0 and free T4 and free T3 near the top of the ref range. He didn’t know how to rx a compounded Rx for the T3 (but probably would have if I could have found out how to write it), but after 6 months on only T4 he did add T3 at my request (which is about 8% T3 to the T4, with better results in mental function, stamina, and the most important test for me and my family, how much undone stuff I can complete at home that has piled up on the to-do list since I began to feel unwell). He also has no issue with ordering a 25 (OH)D vit D test twice a year for me, which is nice. I’ve been going to him for over a year, perhaps a year and a half, and I think he’s as good as I can get with an HMO doc and 10 minute appts.

    By the way, one day last year while getting blood drawn at the lab I asked to speak to the lab supervisor about the TSH ref range. After a bit of back and forth with me explaining it wasn’t the accuracy of the measurements from the 3rd generation test machines, but rather the outdated ref range that was keeping people from needed treatment that concerned me, we had a nice conversation. He was completely unaware of the AACE’s and the NACL’s recommendations in late 2002 that clinical labs lower the upper limit of the TSH reference range because of the concern that hidden hypothrydism was skewing the control subject results (google this for more info) and preventing some people from getting the treatment they needed. He promised to look into it and wrote down the info I provided. A few months later when I had labs drawn again, I noticed on my copy of the results (I always get a copy now), the upper TSH ref range had been adjusted downward. Not sure if my conversation with him was key in this positive development, but…I’d like to think so.

    I do have an appt set up for next month to see a local private family medicine doc who specializes in bioidentical hormone supplementation ( also use OTC progesterone cream for premonopause symptoms) and a “holistic” approach to healthcare and wellness, so if I like her, I may switch entirely, though again, it would an be out-of-pocket expense an not covered by my insurance (though at least some of the labs could covered by my insurance if I go to the HMO lab, with results faxed to the doc). I’d kind of like to try all natural thyroid extract (Armour) to see how that works for me, but at the same time, perhaps I might be at the “if it ain’t broke, don’t fix it” stage. I can discuss that with her.

    Yes, I’m guilty of doctor-shopping, but so be it. I shudder to think if I had just accepted the “I’m sorry to disappoint you, but you’re not hypothyroid” result from my former primary care doc of 10 years. Imagine if I had been treated earlier – I might not have had to go through all that infertility testing and angst, and I wouldn’t wonder if my son didn’t have enough thyroid hormone when I was pregnant with him – I’m hoping he got what he needed and my body took the brunt of the deficiency. I know my health would not have improved had I not gone the route I did. No matter how much we read or learn, we can’t do everything medical on our own, it’s too complex and laws/policies don’t allow us access to our lab results or Rx without doctor’s orders or review (and believe me, I don’t take any medication without careful consideration).

    But I think my family would have exploded if I hadn’t been proactive in unturning stones and getting better and constantly on the search for the best care I could find, regardless of the barriers. Everything was backing up at home, it was like continually walking thigh-high in water, and my family suffered because I had slowed down so much. But the typical doc can’t help you if you’re not obviously sick, or the lab ref ranges don’t accurately reflect a person’s condition, so they want to write a Rx for an antidepressant or sleeping pills. So one has to look hard and long for the non-typical doc, while keeping a sharp eye out for the many quacks and incompetents that lurk in the unconventional medical minefield, too. If that’s doctor-shopping, I’m all for it. Never settle if you don’t have to.

    I think what docs fail to realize is that hypothyroid patients DO become depressed when they realize how frustrating and hard it is to get over and around the barriers to get the care they need from the people that hold all the power, especially once the patient becomes knowledgeable and knows that there are other ways to diagnose and treat these conditions (or that they are even real conditions). Prior to figuring out myself what what wrong (because my doctors failed to), I would have gone along with practically whatever the doctor suggested, but this experience totally shifted a paradigm for me, which has led to other paradigm shifts. I no longer blindly follow anything and *must* find the information that allows me to think for myself, with appropriate guidance when necessary (still a tricky issue but much easier now that my mind can think straight again from the thyroid hormones).

    Additionally, I was extremely aware of the “middle age hysteria” label that plagues the care for women who are trying to make sense of what is happening within their bodies, and it was odd and disturbing to find myself in that very position of worrying about being labeled hysterical just as I hit a “certain age” and developed these vague symptoms. If you had asked me 15 years ago, I would have predicted I would sail into and through middle age with nary a health concern, so it isn’t as if I was wishing or expecting this. The opposite, really. I also have changed my opinion of managed health care and universal payer health care 180 degrees after the past few years, as I think my care decisions should be made between me and my doctors, not by the accountants, insurance companies, or government policy makers. I’m willing to take that responsibility and I’ll bet it is cheaper in the long run, too.

    Anyway, my longwinded story is to encourage you to trust your gut, keep the faith, and get whatever good care you can along the way, even if it isn’t perfect, but it might be a lengthy journey with a few twists and turns. Don’t get discouraged and keep at it.

    goingagainstthegrain

    20 May, 2009 at 9:46 pm

  3. Hi goingagainstthegrain,

    That’s one hell of a story. I would really like to compile a website of testimonies like yours. It seems like there are people everywhere receiving inadequate thyroid treatment. Something needs to be done!

    I think the line I’m going to try on my doc should I be in this worst case scenario is, “Just because it’s inside the normal reference range, doesn’t mean it’s the right level for me. There are all kinds of genetic variations that make you resistant to thyroid hormones. What if *my* normal level is supposed to be a much higher amount of T4 than that?” This will be followed up with, “A lot of the patient advocacy groups recommend that hypothyroid patients feel best when their TSH is below 1 and their T4 is in the upper third of the range. I’d like to at least test how I feel when I’m in that range to see if it helps my residual symptoms. After all, if it’s in the normal range, there’s no harm in it, is there?”

    Of course it’s easier said than done, actually stuttering these words out at the doctor’s office will be a little harder!

    alienrobotgirl

    22 May, 2009 at 11:09 pm

  4. Hi beroul82,

    Thanks!

    Fortunately I’m feeling a lot happier now I know that in a worst case scenario there are private doctors I can go and see, and now I’ve found out where to get Armour thyroid without a prescription. LOL. Should I destabilise again, I will certainly be arming myself with your information! I think getting the right meds will turn into a long, drawn out process.

    I certainly have histamine issues as my reactions to histamine containing foods are severe. I believe folate and B6 help create histamine, and I experience adverse reactions to them. Zinc too? I don’t know whether my histamine is high all the time. Usually I’m fine on failsafe. I have been a bit more rashy and eczematic than usual during the last couple of weeks, what with my enzymes refusing to function and all!

    I’m not anti-vitamin. I’m well aware of many of the effects of vitamins, as I’ve seen them on my own body. It’s just that frequently they are negative as well as positive. I have a list of vitamins and minerals that I CAN take without experiencing adverse reactions. B vitamins, zinc and magnesium tend to kill me though. My diet is adequate in vitamins. Sometimes symptoms that are affected by vitamins are being affected in a pharmacological manner rather than a “curing a deficiency” manner. I would say the exception with me is vitamin A right now, which being hypothyroid, I can’t convert and seem to be very low on.

    alienrobotgirl

    22 May, 2009 at 11:40 pm

  5. Just in case you make a trip to the psychiatrist and request Strattera, I should also mention that conversely, it can induce psychosis and suicidal idealation. Like most medications, the results depend on the dosage, the competence of the physician, and the sensitivity of the patient. Given your present state, though, I think such a visit would be unlikely. However, I’ve responded quite well to a 60 mg dosage. So, no worries.

    Indeed, both pyridoxine and folate are responsible for the synthesis of histamine. But, of course, they are quite essential. So, I try to moderate my intake, and counteract the histaminergic effects with methionine, niacin, and a few other supplements. Such an effort might be futile, and I may be playing with fire, but it’s difficult to find an an anti-histamine that doesn’t have strong sedatory or deleterious effects. Because of this, most anti-psychotics are out. Ditto with the tricyclics, which happen to be neurotoxic. With the right dose, I think the anti-depressant Mirtazapine has enormous potential for tolerably controlling histamine levels. As an added bonus, it has a favorable impact on cognition.

    Your reaction to zinc is somewhat surprising. In contrast, I thrive on zinc supplementation, and I’m pretty sure that it inhibits the release of histamine. Interestingly, zinc has been noted to be helpful for those suffering from hypothyroidism. So, I wonder if your copper levels are low? Copper deficiencies are very rare, so I wouldn’t worry too much.

    I certainly sympathize with your reluctance to visit a psychiatrist. The road to mental well-being can be like traveling on the Burma Road. But, considering the possible consequences of not treating a mood disorder, I see no other alternative. It’s just a matter of finding a psychiatrist that has an excellent background, is empathetic, and is willing to allow the patient to play an active role in determining the prescribed treatment. These kind of psychiatrists are hard to find, but they do indeed exist. But, then again, my knowledge of the of the British health care system is somewhat superficial, and it’s possible that your insurance situation limits your options. In any case, you seem to be on the right track.

    beroul82

    1 June, 2009 at 7:07 am

  6. Hi Scott

    It takes a looong time to get a referral to a psychiatrist in the UK, you can end up waiting for months. My concern is that my physical condition will not be taken seriously if I am diagnosed with a mental condition. I believe that the thyroid medication is going to fix the mental/emotional problems. I am not in any danger, so I am going to wait several months and see what happens to me. I may or may not pursue a psychiatric referral after that point. I have an autism specialist in mind who I may pay to see privately. I believe the correct diagnosis will be Asperger’s syndrome with accompanying cyclothymia, but we will see how much of this changes with thyroxine.

    alienrobotgirl

    1 June, 2009 at 10:37 am


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