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Going For The Throat Art Imitates Life

Post Published: 24 February 2010
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Category: Going for the Throat, Health Care Column Thyroid Diseases and Thyroid Cancers
This post currently has 16 responses. Leave a comment

Going for the Throat, Written by Robyn Davis Hahn

I don’t watch much television.   I’m not opposed to the “idiot box” per se, and in fact quite enjoy a bit of mindless entertainment now and again.   The simple truth is that I just don’t have time to sit and watch, and frankly, if I did I would likely fall asleep.   But it’s my understanding that there is a medical drama out there about a surly doctor who solves interesting and bizarre medical mysteries in a neat-and-tidy one hour format.

In all seriousness, I do not live under a rock, and I realize that “House M.D… is an award winning show with a large fan base.   I’ve even seen 2 or 3 episodes, more or less.  One would think I actually did watch this show regularly, though.   EVERY time I hear a story about a person with a years-long struggle without diagnosis, who eventually finds that doctor who figures out their thyroid disease, but then is inappropriately managed by this (now dour and crusty) doctor–an image of Hugh Laurie pops into my head.

Thyroid disease often has vague, nebulous symptoms that creep up slowly enough to even be missed by the patient for many years.   Clearly, awareness that a disease could and should be suspected for women who complain of being tired, unmotivated, and gaining weight is needed, for both doctors and the general population.

But I would also purport that thyroid disease is a de facto medical mystery, regardless of our level of understanding.   Put simply, I now believe that there is no “typical” thyroid disease–we may have consistent or comparable symptoms, but that’s where the similarities end.   Since being diagnosed myself and hearing about friends’ thyroid journeys, I have noticed that the beginnings have that familiar ring, but then the stories diverge.   It would seem that none of us responds the same to treatment–some do great on synthetic T4, others NDT only, some a combination with T3.   I have friends on over 200 mcg of T4 daily and friends on 75 mcg.   Some were initially seriously ill with a TSH of 5, others with a TSH in the 20s.   Additionally changes in lifestyle and diet are met with varying results, putting some into remission and making no difference to others.

Why is thyroid disease so hard to treat?,   Treatment appears to actually be more difficult than diagnosis (which is already a feat in itself), and I’m not sure our doctors have the knowledge, or if that knowledge is even possible.   Humans are far more intricate, delicate, and complicated than we usually admit or recognize, and obviously one size does not fit all.   When dealing with the thyroid–a key player in so many body functions and processes–multiple cause and effect cascades are triggered, the ramifications of which may not be immediately, or ever, apparent.

Where is Dr. House when you need him?

Robyn – Robyn[at]dearthyroid[.]org

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16 Responses to “Going For The Throat Art Imitates Life

  1. Hypogirl says:

    I would love to see Dr. House anytime *wink wink*. Robyn I wholeheartedly agree with everything you said above! This is an excellent post. While we can all commiserate together not one treatment is the same for all of us. I was seriously thinking of doing a Podcast on this topic. I was writting down ideas yesterday – Robyn we must be on the same brainwave! The reason I was going to do a podcast on this is someone on twitter is twisting my words in my podcasts to make it sound like I am giving advice to others – when I am only sharing my experience with you all. That got me thinking of all the extras each of us do in terms of our disease they are not all the same! I hope you don’t mind but I may mention your post in my Podcast and elaborate a little bit. Is that ok?

    Thanks for writting EXACTLY what I was thinking! 🙂

  2. Dear Thyroid says:

    Hypodiva (do we love the nickname)?

    I agree with your sentiments wholeheartedly.

    One of the biggest issues as I see it, is that our MD’s and OB/GYNs aren’t giving us all of the thyroid function tests as part of our ‘routine’ annual physical. IMO, this is part of why we don’t get diagnosed. Moreover, most, not all, doctors don’t have enough education about thyroid diseases and cancers to thoroughly test us and ask the right questions. Additionally, we as patients need to speak up and use the patient check list http://bit.ly/7lxXEx Robyn provided, as well as sharing our symptoms in painstaking, articulate detail.

    Robyn illuminated something I’ve been thinking about, but hadn’t considered, which was; what’s worse, not getting diagnosed, or not fitting into a one-size fits all treatment. I think where our doctors fail us and where we need to find a better way to work with our doctors is by making sure that we’ve explained what’s working and what’s not working. Though we have symptoms when we’ve reached a ‘balanced’ thyroid, instead of allowing them to pawn us off on other doctors, we need to muster the energy to say NO. NO. NO. These are glaringly thyroid related. WHY? WHY? WHY?

    Great article, Robyn! Great idea and insight, Hypogirl.

    PS: Why did someone think you were giving advice? You so clearly share your experience of your disease and quite beautifully I might add.

  3. Lori says:

    Robyn, to my knowledge, there is only one symptom that is solely akin to thyroid disease (hypo), and that is loss of hair from the outer edge of the eyebrow.

    I don’t mean everyone with hypothyroidism will have loss of hair from the outer edge of the eyebrow, but that if you have loss of hair from the outer edge of the eyebrow, the diagnosis can only be hypothyroidism.

    Graves’ disease can also cause hair loss but supposedly not from the outer edge of the eyebrow.

    Of course, I cannot remember where I read this. I wonder if anyone else has read this and if they remember the source.

    Lori

  4. Dear Thyroid says:

    Hi Lori –

    Let me ask you something, if you don’t mind, is the eyebrow hair loss only attributed to hypothyroidism? Is it a sign of Hashimoto’s, too? How noticeable is it, meaning is it noticeable to a point where a doctor would obviously presume it’s a person’s thyroid and run a proper thyroid function panel if the patient doesn’t know it’s their thyroid?

    With Graves’ the psychiatric disturbances usually manifest first. HOWEVER, every patient is different. Feeling paranoia, delusions, bouts of bipolar disorder, severe depression and extreme rage along with sweating your guts out are typical indicators. I’ve read that there is a lot of crossover, too.

    RE: original above comment, do you think it boils down to better education on the doctor’s end?

    xo

  5. Lolly says:

    Robyn,

    Another great article from you and I totally agree with what you have written.
    Not one size fits all and this is what doctors need to realize so if someone is still symptomatic after being with in the so called normal ranges then go by symptoms aswell as lab results, they so like to say it isn;t thyroid related when indeed most of the time it is that person just hasn’t got to the sweet spot yet and maintained it.
    I do agree however that thyroid disease be it hypo or Hyper isn’t so easy to treat and that is why some of us just don’t do well on replacement or anti-thyroid drugs maybe toxic to some patients.
    I agree with Katie and I’ve said this all along that an annual screening for everyone would go a long way in diagnosing thyroid disease before it gets out of control which in turn makes it harder to treat and become stable.

    Look at all the money saved let alone spent on simple blood analysis less people would be sent to the psychiatrist being told they are depressed given a concoction of happy pills and sent on there way. Others suffering from heart conditions probably bought on my a thyroid condition and numerous other things to many to mention. this is where things should change right at the beginning like I said prevention is better than cure and caught early enough you have a better chance especially in Graves disease of going onto remission.

    Lori well I never knew that about the eye brows does that happen around the pubis too cus mine seem to be sparse..

    Katie I have always had cross over symptoms with this AI disease having hypo and hyper symptoms at the same time which makes it difficult to know where you actually are in regards to thyroid levels so the only way to be sure is to test T labs regular this is the longest I have gone without any should know more this week I feel hyper yet still have hypo symptoms.

    OMG I’ve written an essay.

    Lollyx

  6. dearthyroid says:

    and a beautiful essay at that.

    I didn’t know about the symptom Lori mentioned either. I do think there is a lot of crossover symptoms as well as symptoms that just aren’t intrinsic to thyroid diseases and thyroid cancers. Again, IMO, it boils down to treating the person, not the numbers.

    PS: Loved this Look at all the money saved let alone spent on simple blood analysis less people would be sent to the psychiatrist being told they are depressed given a concoction of happy pills and sent on there way. Others suffering from heart conditions probably bought on my a thyroid condition and numerous other things to many to mention. this is where things should change right at the beginning like I said prevention is better than cure and caught early enough you have a better chance especially in Graves disease of going onto remission.

    xo

  7. Lori says:

    I think it *absolutley* boils down to education and proper testing, i.e, TSH, FT3/FT4, and antibodies. According to the article, it would be a clincher symptom for Hashimoto’s and one would just need to do blood tests to confirm, although I don’t think every Hashi patient has this symptom.

    I’m not sure how many docs are even aware of this phenomenon with the eyebrows but about 6-8 weeks ago I was typing a report on a young man and I knew in my gut he had to have Hashomoto’s disease from all the symptoms that he complained about, and they were totally missing it. Then, at the end of the report the doc added: “What’s going on with this patient sure is a mystery. He also complained about loss of eyebrow hair on the outside edge” (exact words). My mouth dropped. I could not believe what I was hearing. This was a GI doc who previously did primary care also, and he had absolutely no clue. Obviouly, the patient’s primary care didn’t have a clue either or he would not have sent him to a GI doc. When I talked to this doc about myself he had never heard of Cytomel or someone not converting, or that there was something other than the TSH that was important.

    I had loss of outer eyebrow hair on the right side and still do but my primary care doc never heard of this symptom and said it didn’t mean anything at the time. At the time, she also said the ridging of my nails was nothing to worry about and it didn’t mean anything. My TSH was always normal. This was approximatley 2002. I had lots of symptoms even way before that but it always boiled down to the TSH. I shaped up and shortened the outside of the left eyebrow to match the right. I think mine would be considered mild and the doc probably would not have noticed it, but I sure did. I remember reading that it can be very noticable or mild.

    I don’t recall it being related to Graves’ in the article but I could be wrong. I remember it talking about hair loss from the head being related to Graves’ and Hashi. I did a search and so far I have not been able to find that exact article again or a similar one that talks about the eyebrow hair specifically being only related to Hashi.

    Again, IMO, it all boils down to education and proper lab tests. If this article is correct, this would be a simple way to catch Hashi in a lot of people. Robyn, maybe you can ask your endo or doc friends. I will try to remember to ask at my doc appointment this Friday, although my doc is not an endo.

    Do you know any Graves’ pple who have the loss of eyebrow hair? I know someone who has loss of eyebrow hair from the outer edge right now but he also has Graves’ symptoms EXACTLY as you list them above as typical indicators. I have seen people on here say they have both Graves’ and Hashi, so I would think a Graves’ person could have the eyebrow phenomenon?

    Off subject, are the antibody tests the same for Hashi and Graves’?

  8. Lori says:

    Lolly,

    (quote) “Lori well I never knew that about the eye brows does that happen around the pubis too cus mine seem to be sparse”

    Sorry honeybun but that article did not talk about pubis hair. My grandmother lost ALL body hair due to lupus, another autoimmune disease.

  9. Robyn says:

    Hey guys!

    Hypogirl–you absolutely may reference this article for your podcast–I would be honored, in fact.

    Lori–the outer eyebrow hair loss is PATHOGNOMONIC for hypothyroidism. (A sign or symptom that is so characteristic of a disease that it makes the diagnosis. Pronounced patho-no-monic, it comes from the Greek “pathognomonikos’ meaning “skilled in judging diseases.”) As far as I know, it’s the only symptom unique to hypothyroidism, and ironically, the only symptom I don’t have!

    Lolly–agreed re: awareness and not treating “one size fits all”. But I don’t think it’s necessarily because these docs can’t think outside the box. I think proper treatment has not necessarily been discovered yet (for everyone and all cases). For sure, there are many who are straightforward cases and can be managed “the easy way” (T4 replacement). For many others, there is more going on–there are either other disease processes, or the thyroid disease has affected another body system to the degree that a different or combined approach is necessary.

    Well, you can’t think of what you don’t know. I don’t profess to know the answer, just to have the opinion that there is another answer that medicine hasn’t discovered yet.

    Katie–thanks for jumping in, too. I think adding thyroid testing, coupled with some basic continuing ed to GP and Gyn docs (the ones women see most frequently as “family docs”) could help many. Of course, then we have to get the lab ranges to reflect the updated true range, but that’s probably asking too much 😉

  10. Dear Thyroid says:

    Lori;

    Thank you so much for your thorough comment, I appreciate all of the detail. I’d love to read that article you mentioned. I know you can’t find it, but if you ever run across it again, please send it through.

    Graves patients don’t lose eyebrow hair, in my experience and from what I’ve read and know. Again, there are so many exceptions to the rule. Regarding antibody tests, here is something interesting I just found http://bit.ly/dhrqNQ. Let’s review together as a thyamily and weigh in.

    xo

  11. Dear Thyroid says:

    Robyn – RE: lab ranges, you’re right. I think that would fall under ongoing education of doctors to ensure they know what they are. What do you think?

  12. Robyn says:

    Katie–actually I don’t think docs should be on the hook for knowing the reference ranges are wrong for thyroid values. Endos, sure, but not GPs or other docs. They have enough swimming in their brains to have to worry about what tests are actually abnormal that print out as normal on the lab sheet.

    The lab companies ARE on the hook. Why have they not adjusted their ranges to meet the new standards? Money. They can’t just change the numbers on the sheet–they have to find a certain number of thyroid normal patients, run all the blood, do the standard deviation calculations, etc. to nuance the ranges with their actual testing equipment and supplies. That’s just not going to happen without WW3 forcing it to be done.

  13. Lori says:

    Thanks for the link to the antibody tests, K.

    Just my opinion, as far as docs other than endo’s knowing the correct lab ranges, any doc that is treating a persons thyroid disease should make it their business to know the correct labs to order and understand any range discrepancies/changes. If they don’t have time, that’s fine, but they should refer to an endo or other known thyroid specialist, and not treat thyroid patients, IMO.

    Lab companies are on the hook. However, the lab that processes my blood work made changes to how they calculate the TSH after the new recommendations were made for the TSH range to change (0.3 to 3.0) but totally ignored that recommendation and in fact made the # even higher to 5.6 from 5. How stupid is that? I noticed when I was looking at my results, there was a notation explaining the change in the reference range, not just the TSH but also the FT4. It states the method was changed in-house 7/2/08. {{{CRAZY}}}

  14. Bee says:

    I stopped watching Dr House. After working in hospitals for over 30 yrs, I’d had it with know-it-all jerks with MDs behind their names. just my humble opinion. I’ll get off my little soap box tho and say that i def think getting diagnosed is more important than the treatment.Looking back, I believe I’ve suffered thryoid disorder for a gazillion yrs. If I’d been diagnosed yrs b4, I probably wouldn’t have ended up drooling in my Drs office w/ a TSH of almost 40, stroke like symptoms, no shrt-term memory and lack of muscle control. Earlier dx could’ve prevented all this “silliness” I endured and possibly could’ve made my treatment more manangeable.

  15. Lolly says:

    Lori, Katie great article by the way concerning antibodies.
    antibodies generally associated with Hyperthyroidism is TSI( don’t get this test in the UK) and TRab
    Hashi’s TPO predominantly but it’s been known for Hashi’s patients to also have TSI/TRab also so nothing is set in stone and this why you may get the feeling you are suffering from both hashimoto’s’ and Graves at the same time IMO and it is only mine is that you either have one or the other but antibodies present in both same goes for Graves disease TPO can also be high in that too.

    I found an interesting video on You tube take a look.well worth a watch we need more like this.
    Why Thyroid Lab Tests Are Not Accurate – Dr. Hotze’s – Health & Wellness Solutions

    http://www.youtube.com/watch?v=eSwgUndHcqU

  16. Lolly says:

    Bee

    Lovely to see you about missed you lots.

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