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The Dream Of A Thyroid Language

Post Published: 28 January 2010
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Category: Dear Thyroid Letters
This post currently has 10 responses. Leave a comment

Written by: Sarah Downing (Hypothyroid Patient)

Dear Thyzilla,

Had I only known all those years ago when I started gaining weight and being taunted for it by my parents, my sister, my boyfriend(!) at the time and sometimes complete strangers that there was something physically wrong with me or rather you, perhaps then I could have saved myself the years of guilt and self-flagellation that I put myself through. I ate so little, avoided calorie bombs and shelled out on frequent gym memberships. The fact that I had to work my butt off to lose even a small amount of weight only for it to pile back on sooner or later often meant that I would eventually give up going to the gym only to talk myself into trying another form of sport in a desperate endeavor to lose weight and return to the Size 6 I was at age 18. My wardrobe was filled with a department store range of Sizes – from an American 8 to 12 and eventually 14, I had it all and I finally got rid of the smaller ones as I realized it was just futile to try and wriggle my way back into them – despite all my efforts to the contrary.

To make matters worse and illustrate how merciless Germany’s attitude is to women with curves, the biggest available size in most stores is a 12 and this is considered fat. Furthermore, the shops they do have for curvier women tauntingly name themselves things such as “Mode für Mollige/Fashion for Chubbies”. Ignorance is bliss and many people are blissfully ignorant – the gynecologist I went to, for instance, because I was experiencing painful intercourse, which I now know is a result of the fact that the thyroid causes dry mucous membranes, including that of the female genitalia. And, of course, the other symptom of an underactive thyroid – low libido – only made things worse! Instead of helping me, the woman patronized me and even made a nasty remark about my weight, but failed to diagnose me!

I then switched gynecologists only to have the same problem. The first appointment went fine, but by the second appointment – six months later – I had found out about my underactive thyroid and wanted to let her know, as it does after all affect the whole body. Despite this knowledge, gyni number 2 once again made a cruel comment about my weight.

What really blew my mind was when a German friend of mine, who for years had made disparaging remarks about my weight gain and was an addict of Weight Watchers and “so relieved she didn’t suffer from any weight problems”, fessed up that she too was suffering from an underactive thyroid, so how on God’s green earth didn’t she know that this can cause weight fluctuations and why wasn’t she more sympathetic to my plight?

And for that matter, why the hell wasn’t my own mother who herself had been suffering from an underactive thyroid for years and only recently found out? The sad thing is that my grandmother had been suffering for even longer with an underactive thyroid and yet nobody bothered to tell her that this runs in families, so she might want to tell her offspring and theirs to get themselves a check-up. The same with my mother – only several years after diagnosis did a so-called medical professional bother to tell her about the family connection, alerting me to the problem and resulting in my check-up and eventual diagnosis.

I was happy and sad at the same time to finally know that there was a reason for me being “fat” – I’m only slightly overweight, but thanks to the people I have crossed paths with over the years – I now do have hang-ups about the way I look and never again will I look at a fat or overweight person in the same way, because I know only too well that it can often be something so much more complicated.

A friend of mine has a German husband who makes tactless comments about my weight every time we see each other. I wanted to finally nip this in the bud, so I mentioned to him at our recent Thanksgiving party that I had discovered I have a metabolic condition and hence the weight problems. I figured that because he owns a gym, he should be familiar with this kind of thing. Of course, like so many others, he didn’t listen and then proceeded to compare me to this 600-pound British guy who had been in the news a few weeks earlier and couldn’t get out of bed or out of his chair. I had also explained to Mikey – yes, you know who you are, although you may never read this letter – that I am suffering from extreme exhaustion right now, which is almost certainly compounded by the Epstein-Barr virus I was diagnosed with. Because people with an underactive thyroid usually have weakened immune systems, we are more susceptible to infections such as the EBV virus, which 95 percent of people carry in their body at some time, but only when your immune system is weak does your body become unable to fight it off and chronic Epstein-Barr and thus Chronic Fatigue Syndrome may result. Right now I’m on antivirals for this, which will not get rid of the virus entirely because once it is in your body, it remains dormant your entire life, but with a bit of luck, the antivirals will deactivate it and, from what my new and wonderful doctor tells me, once my thyroid receives adequate treatment, my immune system should become stronger anyway.

But I’m getting ahead of myself. Allow me to backtrack to the point in time at which I got diagnosed by my first doctor. I was put on the one-size-fits-all Levothyroxine (my current doc confirmed and I also read that T4-only meds are most often prescribed, as they are cheaper than the T3-T4 combination meds that many patients find to be more effective, which is what I wanted in the first place had I actually been given the choice!) and told to come back in three months. After about a week to 10 days (apparently that’s how long it takes to get into your system), I was feeling phenomenal – I was no longer sleeping till 12 and bright-eyed and bushy-tailed most days at painfully early 8 am. It felt awesome to have so much energy and I finally started losing weight, too. I had decided to invest in a personal trainer because now that I knew the cause of my weight problems, I felt finally able to tackle them and was hopeful that I would succeed. As my trainer is also a physiotherapist, she can write me bills for physiotherapy (which is pretty damn similar to what we do anyway) and the insurance pays, or at least they did so far, but now they too are trying to make my life hell, but more on that later.

After about one and a half months in to taking the meds, I started feeling crap again and had stopped losing weight despite my rigorous workouts twice a week with my personal trainer. I went back to my doctor, but as I was trying to get my insurance to pay for therapy at the same time and needed her to write a report, she fobbed it all off as “emotional exhaustion”. The thing is I have experienced emotional exhaustion before and I was certain that this wasn’t it. We’d gone through the year from hell with my grandfather and my fiancé’s mother dying within months of each other, so I felt that therapy would be beneficial (after making me and my potential therapist jump through several hoops, my insurance company got one of their lackeys to turn down my claim as “not medically necessary” despite my doctor certifying several medical diagnoses in an attempt to get the bastards to pay – but this is a standard process of insurance companies here. Even if your doc states something is medically necessary, they still ignore it half the time and you have to fight it tooth and nail).

Incidentally, I suspect that the year from hell may have brought all this stress and entailing medical problems to the fore (my cortisol levels are now sky-high and this is caused in part by increased stress – adrenal problems are extremely common with thyroid patients), but therapy wasn’t going to help my tiredness and I knew that, so I changed doctors, further empowered by the thyroid websites I had been reading and researching on, which all too often described patients and their doctor horror stories. I didn’t want to be one of those who makes the mistake of staying with the wrong doctor for years. Incidentally, before we switched doctors, I had asked our doc to check Corey’s thyroid because he was tired, irritable and slightly overweight, but moreover because his brother has Hashimoto’s. She did a simple TSH test and pronounced him healthy, just as she pronounced me cured when she took my first TSH test when on the first new meds, despite my persisting symptoms. I was skeptical either way.

We changed doctors based on a recommendation from a good friend with Hashi’s and a wonderful website listing German thyroid doctors recommended by patients and organized by zip code. Dr Neufeldt is something else. I have never met a doctor quite like him. Now I try to do some research at least once a day, partly because it fascinates me and partly because it empowers me to be a better patient and increases my chances of getting better. Doctor Neufeldt encourages this and is also extremely knowledgeable. He works with a team of specialists in his building because he knows how a stubborn thyroid – like yourself Thyzilla! – can affect the whole bloody body. Consequently, he found that one of the arteries in my neck is starting to become blocked (occlusive disease) and checked my blood for genetic risk factors. He has concluded that this is caused by my thyroid and is confident that once on the right thyroid meds, this too should go away. He also found the seven gallstones that the other doctor missed and that are exacerbating my bloating and inability to lose weight. And, most importantly, he actually bothered to check for and found the Epstein-Barr, so now I have to take four little white pills a day and they had better kills of this damn virus!

The other thing he found is that my fiancé Corey does in fact have an underactive thyroid. An experienced thyroid doctor can apparently tell just by looking at someone sometimes that they have signs of thyroid problems. Corey has puffy eyelids and is slightly overweight. Doc tested him and, despite a normal TSH, he found that his thyroid problem is even worse than mine and mine had apparently persisted for at least 10 – 15 years! Corey’s fatty liver, which no other doctor had bothered to do further testing for, is apparently also caused by his thyroid – it’s something to do with the body’s impaired lipometabolism and the buildup of fats. The doc also discovered two gallstones – apparently, 90 percent of thyroid patients have these and they’re also due to the messed up lipometabolism. Corey was angry at the number of doctors who had accused him of drinking too much, even though he drank in moderation. Ignorant gits! Even the “snore therapist” he went to to check out his sleep apnea took one look at his BMI and freaked out. And don’t even get me started on BMI – not only am I slightly overweight, but my BMI will never correspond to the stupid tables because of my body type (big boobs, broad frame) – it tells me I am morbidly obese. A case in point, which really cheered me up: Kate Harding Illustrations. Apparently, sleep apnea can be another symptom of hypothyroidism, but in Corey’s case he also has a deviated septum that he’s going to get operated on in January 2010.

Right now I’ve reached the point where I’m doing as much research as possible to help both myself and others. My own mother is obviously under treated, as she is still experiencing tiredness and brain fog. Thanks to Mary Shomon’s Top Docs website, we’ve found recommended private doctors she should be able to see in the UK. Everyone in the UK has health care thanks to the National Health Service, but due to lack of funding, it’s just not always as high-quality as you’d like or need and luckily my parents are prepared to and able to spend out some extra money to see a private doctor to get my mother better. My own sister had been experiencing various symptoms – night sweats, eczema, irritability – the question is whether or not she has also been hit with the family curse. My brother-in-law has also had his share of ignorant doctors, telling him that his overweight and inability to lose it is caused by his overconsumption of beer and lack of exercise. The same doctor tested his thyroid levels the first appointment and told him that they were worrying only to tell him the second appointment that the very same levels were just fine and that he should come back in six months without an adjustment of his medication.

Thanks to Mary Shomon’s Top Docs, once again, we found a recommended doc. We had to travel about two and a half hours to get to her because they live on the Gulf Coast of Mississippi, where many doctors vacated and still are vacating after Katrina and due to the onslaught of the economic crisis. My sister-in-law has been suffering for 10 years from a pitiful laundry list of ailments, notably fibromyalgia and chronic fatigue (CFS), which is caused by the Epstein-Barr she also has. When discussing our symptoms on my new diagnosis, we realized that our symptoms are awfully similar – notably the aforementioned, plus her hair loss and the fact that she went from a Size 6 to a Size 14-16 within a matter of months, has had weight problems her whole life and so did her mother. Thyzilla, we suspect that your twin brother Thyzuki may be creating havoc in her life. Sadly, the hoards of doctors she has been to have been unable to treat her because she is on Medicaid and they either don’t care or don’t know enough. As soon as she gets the opportunity, she too will go to my brother-in-law’s new doctor, who after the first appointment appears extremely promising. I hope to God she can give her some diagnosis other than – oops, you have CFS and there’s nothing we can do – strange that, considering my doctor gave me antivirals for the Epstein-Barr.

In addition, we suspect various friends of ours may be suffering from thyroid problems (considering one in three people do, it’s a pretty common, but horribly misunderstood disease). Like my sister-in-law, one friend has also been diagnosed with CFS and fibromyalgia and these days, it seems many docs believe CFS and fibro to be just another symptom of an underactive thyroid, our current doctor being one of them. We persuaded my friend to go and see our doctor as she has already suspected problems with her thyroid and we’ll be going together some time in the future. Another German friend blatantly has a thyroid problem – they even saw it on the sonogram, but because her TSH is normal (G-damn!) a whole range of doctors have refused to treat her, so she continues to lose hair, gain weight and suffer horribly. We found a new doctor near her on the German site I mentioned above and I hope she will go to her at some point, but seeing as she has just lost her father, that might take some time.

To add to all this turbulence, my German private health insurance are trying to turn down every claim under the sun by having their oh so unbiased “experts” claim that treatments are not medically necessary despite the doctors saying they are. My worst gripe is that it doesn’t take a genius to figure out that a year’s worth of intense stress such as this, an underactive thyroid (known for causing joint pain) and an active case of Epstein-Barr, which merits administration of the same antiviral drugs given to AIDS, cancer and chemotherapy patients, very likely would cause constant back problems and pain akin to my current symptoms. They are refusing to pay for the chiropractic the contract states they will pay for, so the New Year will start with a letter to the ombudsman (who mediates between policyholder and private health insurance – he has a lot of cases right now because when the economy is suffering, they try to cheat their patients and breach their contracts) to fight them for all the treatments they are obliged to pay for. I’ve been to this guy before though and I know he is good and fair, so I trust he will help me again this time. My thyroid doc is outraged and also on my side, as he is writing them a letter to tell them just how sick I am or rather how sick they are!;-). Insurance companies shouldn’t get away with treating chronically ill patients this way and, in my case, I will do my utmost to ensure they won’t.

So right now, every morning, we each take half a tablet of the new T3/T4 combination medication (Novothyral) that Dr Neufeldt has prescribed us – he tells me it is the practice in Germany to start out with low dosages and then slowly up them . He said it was the other way round in the US, but having no experience of treatment in the US (yet), I can’t really comment. I think we may need our dosage increasing, but we’re jetlagged – we just took a 12-hour flight from Germany to Mississippi, or rather two flights – just recovered from a cold and a 24-hour stomach bug and are also excited about our recent engagement. Corey proposed to me on 25 December, so now we really are in this together through sickness and in health. And, on a positive note, my father who had taunted me for years about my weight gain actually went so far as to apologize when I explained to him that I have a metabolic disease.

My name is Sarah. I’m a 32-year-old English translator and writer living in Düsseldorf, Germany, with my American fiancé Corey. We just recently got engaged (last Christmas Day) and were also both recently diagnosed with Hashimoto’s . We’ve started on thyroid meds and I’m also on antivirals for Epstein-Barr right now. It sucks that we are both ill, but I am glad that we can support each other in this fight to get better and fortunate that we are among the lucky few to actually get diagnosed. Thank you, Dear Thyroid, for giving us the opportunity to express ourselves and hopefully help each other by doing so.

Sarah Downing –

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10 Responses to “The Dream Of A Thyroid Language”

  1. amy says:

    Wow! That was a long letter. I also have gallstones and my Dr. has told me that it is not uncommon for people w/ Hashi’s to have them. I am so glad that you and your fiance got each others backs! My Dr. did start me higher and go lower…just the opposite. I really like how you are becoming more educated and trying to help those around you…you can never be too cautious! It is much better to know you have a disease so that you can be treated for it and get on the road to recovery than to not know and get worse and have no clue why. Best wishes to you, your fiance and all your friends and family!

  2. dearthyroid says:

    Hi Amy;

    I love what you wrote. I didn’t know that gallstones were a symptom of Hashimoto’s. See, you learn something new every day. I did recently learn that endometriosis is a side-effect of Graves Disease, which I have.

    Anyway, moving along… I agree with you, it’s wonderful that Sarah and Corey have each other. I think it’s amazing that both of them have thyroid disease.

    Like you, I love her commitment to research and knowledge.

    I agree with you regarding knowing the diagnosis, it’s so true. Even if it’s painful, better to know than not know.

    Thank you for commenting and reading Sarah’s letter, Amy!

    xoxoxoxo

  3. amy says:

    You know, I was actually glad when I was diagnosed because I had a reason for EVERYTHING that was going on. That much was comforting. Living with disease day in and day out isn’t comforting but I make the best choices I can to have a healthy, normal life. It was actually my mention to my Dr. about some issues my sister was having that in an around about way my sister found out she was borderline hypo. And that is my sis Dr. now, too, and we are in good caring hands!

  4. dearthyroid says:

    Amy, you are both so lucky! I am so grateful that you have a great doctor and feel well cared for. I wish we heard more good endo stories than bad stories.

    In the end, I was glad I was diagnosed, too. As you said, living with it isn’t comforting. In fact, IMO, it’s hell. I’m learning to live side-by-side with it, which is daunting at best. We have to keep fighting.

  5. Amy, you are right. It was a long letter. I had so much to say, but was in a rush to write it because Corey was breathing down my neck, trying to get me to hurry up so we could get ready to go to New Orleans on New Year’s Eve;-). Had I had more time, I would have pared it down, but I was just so eager to send it out while it was fresh in my mind.

    Interesting that your doc knew about the gallstones. Mine seems to think that the thyroid tablets should normalise my digestive system and the gallstones should go away of their own accord. The blockage they found in my neck is already starting to get better, but I’m just so impatient and sick and tired of being sick. It’s hard carrying on as normal, particularly when your customers are as demanding as mine – in the language industry, they really do expect perfection regardless of how you are feeling and I also find that Germans are a particularly persnickety people. I’m a bit of perfectionist and my own worst critic, but they are even worse – sometimes, they even like to tell me how to write my own language! I am able to be honest with some of my customers about my illness, but only a select few. It helps when they are more understanding about deadlines.

    As for friends. I would be lying if I said I wasn’t disappointed at the lack of support or understanding we have received. Some of our friends are truly fantastic, but they are the few who actually get it. Even when I explain in detail, they don’t want to understand or care. This makes me angry as I feel that I deserve more, particularly as I have been there for my friends as much as I could over the years.

    I am glad for you, Amy, that you got diagnosed – you are right in that it is better to know that not to know, although sometimes all the knowledge and research gets overwhelming and I wish I could stick my head in the sand (I think my brother-in-law who has Hashi’s would like to do this, too. I love him to bits, but he just doesn’t want to deal with it, which is why I got together with my sister-in-law and looked through the Internet doctors to find a new doctor for him).

    I am so glad you have a caring doctor Amy and I hope that he is making you feel a lot better. Once I found out about my thyroid disease, it made me feel a little more relaxed about my body because I knew why it was the way it was, but I am still bitter that I have to go through this – then again, I know that I am not alone. I just wish that more people understood it.

    I wish both you and Katie all the best. It’s been the week from hell – selfish, demanding, unreasonable customers – so I’ll be glad to take the weekend off and just relax! A friend of ours is coming round on Sunday and she’s one of the few who understands thyroid disease (she has medical connections) and how it affects people.

    Love,

    Sarah

  6. amy says:

    Sarah, I was just saying that is was a longer letter as a comment not as a criticism. I think that it is perfect just the way that you wrote it! You needed to say all that stuff! I was glad to read every word of it! Have a great weekend and you are not alone. Although, I do wish that we were not all bonded together by disease….

  7. Hey Amy, don’t worry. I didn’t take it as a criticism. Thank you for your kind words. I’m glad you liked it. I was mad at myself after I sent it because I felt it could have been better (because of my job, I’m a bit of a perfectionist about my writing:-)) Are you on Facebook? If so, I’d like to add you as a friend if I may. I too wish we weren’t bonded by this disease, but surely that is something positive we can get out of it – by making friends, offering each other mutual support and educating those who are unaware about this disease that is so prevalent. I try to tell myself that bad things happen for a reason – it doesn’t always seem so at the time, but we never know exactly where life is going to take us.

  8. Lolly says:

    Sarah,

    Your letter is all to similar to so many peoples who have been misdiagnosed in the beginning still getting inadequate labs to determine thyroid levels. I live in the UK don’t think by even going private it will be any better you got to find a good doc who is up on the thyroid most of them deal mainly with diabetes and endocrinology is a second speciality.

    It is great that you are looking out and researching for your whole family. Great letter BTW and you are right I think having bad things like this happen, make you stronger in the end, I know they have me. I am not a quitter and won’t let this disease (I have Graves and GO) consume my whole life, life is too short for that so we have to do whatever necessary to improve the quality of life and if that means changing doctors or fighting for what you should be getting then I am all for it.

    Good luck I am sure you are a very strong person too.

    Lolly

  9. Hi Lolly,

    Thank you for your well wishes. I am so sorry to hear about your Graves and your Graves Ophthalmopathy. How does this manifest itself and how does it start off? I assume you are referring to the typical “bulging eyes” (sorry, this sounds so unflattering, but I can’t think of any other way to put it) that some (mainly hyper) thyroid patients experience, but I have also heard that it can be related to dry, itchy eyes.

    I have dry eye syndrome, which may or may not be related to my Hashimoto’s, but luckily it’s not that serious (just Stage 1) and I get by with the occasional application of eye drops. It annoys me when my sensitive eyes tend to water though, but I know it could be worse. I have also heard that there is a new operation available for this, but I have to admit that I don’t know nearly enough about Graves’ disease and should probably read up more about it. Part of my thyroid is hyper, which is perhaps why I may come across as energetic at times, although I feel knackered right now.

    My sister-in-law and I joked that maybe I don’t suffer from the hair loss symptom because my elevated male hormones (thankfully no visible symptoms) are overcompensating. They are known to cause hirsutism – thankfully, I don’t suffer from this, but it does make me wonder if the above could be true.

    Everything is interconnected and right now both my adrenals (high cortisol), sex hormones (elevated male hormones) and thyroid are out of whack – it makes you realise just how complicated the whole thing can be and I almost wish our doc would start out with a higher dosage as I’m sick and tired of feeling sick and tired, a statement which I’m sure many thyroid patients would gladly agree with.

    I have heard some horrendous things about how the NHS deals with thyroid disease. This particularly concerns me as my mother is in the UK and I have actually persuaded my parents to go private, as she is obviously not getting the treatment she needs. I am hoping that she can go and see Dr Gordon Skinner in Birmingham – he sounds awesome. In fact, from my research I know that there are a few really good private thyroid docs in the UK – Durrant-Peatfield was/is one, I believe. Where are you based? There is a useful list at: http://thyroid.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=thyroid&cdn=health&tm=9&gps=227_484_1020_574&f=22&su=p284.9.336.ip_p726.5.336.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.thyroid-info.com/topdrs/unitedkingdom.htm

    Are you on Facebook. If you are, I’d like to add you. Otherwise, feel free to add me.

  10. BTW: I just realised that it sounded like the operation I was referring to was related to dry eyes – just to clarify, I was referring to the operation for TED.

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