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Thyrants, February 6-13

Post Published: 13 February 2010
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Category: Thyrants, Thyrants and Thyraves, Thyroid Symptoms Discussion
This post currently has 15 responses. Leave a comment

thyrants feb 6-13

Twitter:

@ARTIBILITY Ok… here goes: I hate when I am freezing cold and it is 75 degrees. I hate when my hair falls out and I have somewhere to go.

@christinah84 Having one of my slo-mo days. Everything seems to take forever and I constantly forget what I was about to do.

@thepinkwoobie I hate what you have done to my eyebrows. No amount of shaping and waxing can fix them. I always looked surprised.

@aimlessaimers I have thyxaustion. I know I’m tired when I’m too tired to kvetch.

@Van3ssaG I don’t know if its the upcoming #snowmageddon or my dear thyroid but I can’t seem to shake this tiredness!

@reelgonekid Why aren’t I tired when I should be, why do I get tired when I shouldn’t be? This is the hardest part should I get a night job?

@anonthp I’m so tired that I feel gray… no shades of black and white, just gray. Need some thycolor in my world please?

Facebook:

Lori Caprio Callahan Thyroid disease is sucking the life out of me and fucking up everything else. Little by little it’s all crashing down around and I’m too exhausted to care today.

Jovan Bone Well my thyrant is that I’m extremely tired but I got to stay up to watch Survivor! LOL!

Stephanie Lawton I definitely have a thyrant in my somewhere, but I’m always kind of exhausted by now, so unless I remember in the morning I doubt I’ll manage one (unless I happen to be talking to someone and it just happens organically).

Miriam Lipsidge Having had the disease for more than half my life, I tend to thyrant practically on a daily basis about our British national health scheme (NHS) which has a “one size fits all policy” and will only treat us Hypothyroid patients with Levothyroxine! I am sure there are others from the UK who agree with me.

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15 Responses to “Thyrants, February 6-13”

  1. Hashimoto’s has taken the living out of my life. My family doesn’t get it, and sometimes I just feel like one of those people in the movies where I am moving in slowmo while the world is rapidly going on without me. And I am tired of waking up evey morning with a headache and when you do try to talk to someone, they all same the same thing, “oh yeah, I get that too, you’re fine.” I just want to scream at them but am too tired!!

  2. Hi Jamie;

    Thank you for sharing as much of yourself as you did- very proud of you, not easy to do.

    I love when you wrote “I am moving in slowmo while the world is rapidly going on without me”. I feel that way, too.

    Very frustrating when people don’t understand the severity of what you’re enduring. I’m so sorry that you have to endure it and that you’re not getting the support you need from your family.

    Question, have you educated them about this disease, your disease? Are they receptive to learning about it? Where do you get the support you need?

    Keep writing and keep talking! You’re not alone. We’re all here for you.

    K

  3. Hi Katie,
    Thanks for commenting back. The funny thing is, is that my husband is the one who poured over the medical books to find out what I had since the doctors didn’t seem to have a clue. But once the dr. put me on synthroid, my husband said I should just be fine.

    If fact about a year ago he asked me to stop taking the meds because he thought I was psychologically dependent and that I really didn’t need them anymore. He thinks that most of my problems are mental and that I am just crazy and when I’ve tried to explain, I am dismissed.

    But anyway I so appreciate this site and think it is great. Thank you for your hard work and information and support!!
    Jamie

  4. Hi Jamie;

    I love that your husband took such a proactive role in the beginning. The greatest misconception amongst the majority of the medical community and ‘the others’ who don’t have this disease, is that the little blue pill is the cure all be all. We as patients know differently.

    What do you think we can do to help him better understand that (A) You cannot go off your medication and that (B) this disease comes with a heaping dose of psychiatric disturbances?

    Thank you for being a part of our wonderful community.

    Please email me and let’s discuss, yes? katie@dearthyroid.com.

    Hang in, Jamie. It’s not you, it’s your thyroid. Also, never hesitate to ask your husband to email me. I’m happy to help in any way that I can.

    Take Care,
    K

  5. Lolly says:

    Hi Miriam,

    I know just what you mean about our good old NHS and Levothyroxine there is something happening soon I don@t know how well it will go but all Doctors and endos will be getting it so maybe only maybe things may change for the better. I live in hope and live T3 deprived

  6. Lolly – What do you think is happening, something good in the medication department for thyrodians? What T3 medications have you tried? Has anything worked?

  7. Out of curiosity, I was reading about awareness ribbons. It seems there are no less than 24 for multiple diseases, including PCOS, Chronic Fatigue Syndrome, fibromyalgia, diabetes and sleep disorders. All of these are common symptoms of thyroid disease, so can anybody tell me why there isn’t a ribbon for thyroid disease? Talking to a good friend … See moretoday, he said people generally associate fat and depressed women with thyroid disease. Unfortunately, it’s a little more complicated than that! Another acquaintance said he didn’t realise thyroid disease was that bad (his own mom has it!) Can someone tell me why all these other diseases or mere symptoms of thyroid disease get so much attention and sympathy and why half of the time thyroid disease is ridculed and misunderstood? Perhaps if we focused more on thyroid disease, we could prevent half of these things occurring in the first place or even cure them once they are in existence by properly treating the thyroid. Thyroid disease isn’t a joke and people need to start realising this.

  8. Out of curiosity, I was reading about awareness ribbons. It seems there are no less than 24 for multiple diseases, including PCOS, Chronic Fatigue Syndrome, fibromyalgia, diabetes and sleep disorders. All of these are common symptoms of thyroid disease, so can anybody tell me why there isn’t a ribbon for thyroid disease? Talking to a good friend today, he said people generally associate fat and depressed women with thyroid disease. Unfortunately, it’s a little more complicated than that (I know he knows that, but he is right about the stereotype)! Another acquaintance said he didn’t realise thyroid disease was that bad (his own mom has it!) Can someone tell me why all these other diseases or mere symptoms of thyroid disease get so much attention and sympathy and why half of the time thyroid disease is ridculed and misunderstood? Perhaps if we focused more on thyroid disease, we could prevent half of these things occurring in the first place or even cure them once they are in existence by properly treating the thyroid. Thyroid disease isn’t a joke and people need to start realising this.

  9. Miriam says:

    Lolly, Hi, good to read there are more of us UK Thyroid sufferers on the site 🙂 I am curious, what do you mean that there is something good happening soon? I haven’t heard anything lately? Would love to know more…..please share it, especially with us UK deprived Thyroid sufferers…..we so need that T3 or the combined Armour or equiv!!

  10. Miriam says:

    Good point Sarah. The more we publicise the Thyroid disease, the more the medical profession will stand up and listen and realise that we are all being treated correctly and start treating us more individually and not use “a one size fits all” approach when it comes to Thyroid disorders.

  11. Lolly says:

    Lolly — What do you think is happening, something good in the medication department for thyrodians? What T3 medications have you tried? Has anything worked?”

    Here is what is transpiring and hopefully this will be big.
    I have been helping as much as I can by passing it onto forums and admin for them to help in anyway.
    If we can change the way doctors endos practitioners looks at other treatment for thyroid disease not just one pill fits all as most of them do now some of us will feel better than we are at present I need T3 I am still in the process of working on my endo hopefully my labs will reveal I am T3 deprived and not a good converter.

    SO if anyone is willing to help out by reading this and sending websites forum administrators email address Shelia of tpauk is the women to contact here is a copy email i was sent with all the details.

    Sheila
    Dear Member,

    TPA-UK is in the process of creating a world-wide Register of Counterexamples to the levothyroxine (T4)-only therapy. The objective is to draw to the attention of those responsible authorities throughout the world, the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism. The Register will list the names of sufferers who have been prescribed levothyroxine (T4) only therapy, which failed to alleviate or eliminate their symptoms of hypothyroidism; those who have been prescribed a T3 hormone containing product (either in combination with T4, or T3 alone) that resulted in relief or elimination of their symptoms, and those who were prescribed a T3 hormone containing product whose doctor replaced it with a prescription for T4-only – who then found their symptoms of hypothyroidism returned.

    I do believe we could get thousands of names on such a list to show the authorities world-wide that there are many, many counterexamples to T4-only therapy who would benefit from a T3 containing hormone replacement.

    The Register of Counterexamples would be found through answers to a very short Questionnaire (4 questions only) asking for a simple ‘YES’ or ‘NO’. A link to this will be placed shortly on our web site. Answers will be automatically collated online.

    A copy of the completed Register of Counterexamples to the levothyroxine-sodium (T4) only therapy will be sent to the Deans of all Medical Schools, Medical Boards, World Health Organisation, Authors of guidelines on the diagnosis and management of hypothyroidism and endocrine/thyroid associations throughout the world.

    We are in the process of creating an excel spreadsheet showing the EMAIL ADDRESSES ONLY of the owners of all thyroid web sites (who will be asked to put a link onto their web site to give their readers the opportunity to complete the questionnaire, the EMAIL ADDRESSES of the owners of Internet Thyroid Forums,(who can write to all their members individually asking them to complete the questionnaire), the CONTACT DETAILS for Local Support Thyroid Groups (who can give the link to their local members) and the EMAIL ADDRESSES of doctors throughout the world who prescribe T3 hormone containing products (synthetic or natural).so they can also give the link to the Questionnaire to all their patients who are prescribed a T3 containing product.

  12. Lolly says:

    Hi Miriam,

    I would like to say good to se another thyroid sufferers but that would be cruel so pleased to see another Uk person having the same difficulties as myself here in the UK we are not alone, there are thousands of us or is that millions who knows. Please refer to my post to DT just above you will see what I mean. Hopefully this will bring change within the health sector when it comes down to treatment protocols for Hypothyroidism or people taking just t4 levothyroxine.

    Fingers crossed this is big enough to shake the system up and get them take note. I know Shelia will be working her damn hardest to make sure of it, she is one hell of Gal.

    I will try keeping you all updated but if there is anything anyone can do to help please be sure to contact Shelia at TPAUK say Lolly sent ya.

  13. Elaine says:

    To Jamie, Hang in there. my husband and children are supportive, but my mother and sister are not. We have all heard it one time or another…”It is not that bad”. Well excuse me, It Is That Bad! I made a t-shirt that has that on it. I wear it when ever I know I am going to see my mom. I don’t see my sister any more. I don’t need to deal with the negative vibes she gives out. I did not pick her as my sister and so I don’t pick her as my friend. You can pick your relatives. I do.

    As for my husband he is still very supportive and helps me work in my support group. He has talked to many husbands about living with someone with Graves’ Disease and TED. He even wrote a paper on it. Maybe he should talk to your husband
    You can read his paper on my website under “My Book’
    http://gdcoffeebreak.weebly.com

  14. Hi Elaine,
    Thank you for your positive words and I read your book. I was moved to tears reading what your husband wrote, it is nice to know that a man could be understanding like that. It seems it wasn’t always that way but he loved you enough to try. I will try and get mine to read this, but I won’t hold my breath, lol. I did like the check list you made also, many things on there that I can do myself. Some will be tough, I do find I hold a grudge. It is amazing how much I have learned from people like you on this site and it has made a world of difference for me. Thank you so much for sharing and supporting.
    Jamie

  15. Elaine says:

    Jamie,
    All we can do is try. But, trying together makes it easier. As long as we know we are not alone. That is scary. Glad you like me little book and my husbands stuff. He can be hard on men that won’t try to understand the women they love. But, that can be a good thing.

    Elaine

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