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Friday November 28th 2014

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Volcanoes and Pharmaceutical Synthroid Reliance

(Guest Post, Written by, Michelle)

With all the travelers being stranded in different countries due to the volcano eruption this last week, it got me wondering about travelling with my Synthroid, and without my thyroid.

Just the other day, my parents were talking about how they used to count out the number of pills they would need to travel with, and how now they pack more, just in case. In fact, on their visit out West this week, their plane experienced mechanical malfunction issues mid-destination causing a delay of almost a day arriving.

Then, the next morning after our discussion, I saw a ticker tape on headline news reading “NY woman with medical condition running out of meds, stuck in UK due to volcano“. Bingo! I thought. This is exactly what I was discussing with my family. I turn up the sound on the TV just as the words “stranded, running out of synthetic thyroid hormone” flash by. Maybe I missed the part where they talked about her thyroid medicine; how much she had left, and if it is possible for her doctor to somehow get her meds in the UK. The questions being asked were about how her husband is coping with the kids’ schedules and what our government is doing since the UK is apparently sending warships to collect its stranded citizens. And the piece was over…What?! Now I have more questions than ever!!

Before my decision to have surgery, I remember my doctor discussing “synthetic thyroid hormone being widely available, throughout the world, even”. But, now I’m wondering if that is true. What if I, like the lady on the news, am stranded in a foreign country with no insurance coverage, and no local doctor? I am reliant on this medication to keep me alive. It’s not a mere “supplement”. I HAVE NO THYROID!

Well, now that I am reliant on that medication to keep me alive, I am wondering, what do we do if we’re stranded in a foreign country without our meds? I know the difficulty I’ve had in the past simply being in a different state than my doctor, or in an “out of network” state, trying to get a prescription filled (adult chicken pox anyone? just me?).

My mother recently came down with bronchitis while vacationing in Hawaii. It took some doing, but they were able to track down a pharmacy their insurance would take, and their doctor could prescribe through.

So, now this whole box of worms is open in my head. This new reliance I have on thyroid replacement hormone to keep me going. What if the pharmaceutical companies ever have a collapse like the automakers, the banks and mortgage lenders?

I just, this week tried to refill my Synthroid a little early, so I wouldn’t run out while travelling. Apparently my insurance will only “allow” the refill when I have only one week left. Well, I’ll pay out of pocket to have it, thank you.

With all the pieces that have to fall into place to get our monthly doses filled; the insurance, the doctor, the pharmaceutical companies; our lives seem reliant on all these aspects out of our control. When discussing this with my mother-in-law, her response was “I guess people in the old days just used to die”. Hmmm…

My mother asked me last night what the effects would be, and how long it would take for the effects to be noticed if I stopped taking my Synthroid. I am not a doctor, and I explained, to the best of my understanding, that I believe the replacement thyroid hormone takes about three weeks to work its way out of a person’s system. But, that the effects would be apparent before three weeks.

And then, as I understand it, the body would start to shut down; than coma; than death.

I was explaining this logically and unemotionally. Then, I looked at her face and realized what I was saying.

Without our replacement thyroid hormone: Are we all just 30 days from death?
Michelle

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27 Responses to “Volcanoes and Pharmaceutical Synthroid Reliance”

  1. Em says:

    Okay, that scares the living crap out of me. I normally travel with my entire bottle (because I’m too lazy to count out pills and first thing in the morning I’m too sleepy to figure out which one is my synthroid and what the others are). But to get stuck somewhere and run out . . . ERGH!!

    I had not thought about that at all. Thanks for bringing that to my attention.

  2. Dear Thyroid says:

    I know, right, Em?! Terrifying. Though we have to pay for the additional dosage, which sucks, of course, it’s so worth it. I’m so happy Michelle wrote about this.

    I feel the same way you do.

    xo

  3. CindiStraughn says:

    When I was diagnosed hypo in 2004, what really bothered me was realizing I was going to be dependent upon a medication to live. It really took a while for me to accept that thought and I’m not sure I ever did. I think I just tucked it into that corner of my mind labeled “things I can’t do anything about”. And thyroid meds got company in that brain corner when I later became dependent upon adrenal hormone replacement in 2006.

    Fast forward to May 2009 at a physician’s appointment where I happened to mention to my doctor that I always keep a little “extra supply” of my meds (don’t ask, I won’t tell here – although if you have a RX you can legally order from overseas) and she gave me a funny look like “whatever could go wrong?”. Now, does “2009 natural thyroid shortage” ring any bells? I survived it because I had realized a while back that all sorts of things could go wrong that might interfere with my monthly pick-up at the drugstore of my life-saving meds. Natural disasters, gas shortages, trucker strikes, civil unrest, total economic collapse – yep, i prepare for all of them – and that includes a good stock of my life-saving meds.

    This May 2010 at the same doctor’s office – I reminded her of my earlier 2009 statement – and she nodded her head in agreement this time. Her office went thru hell trying to keep their natural thyroid users supplied, even to the point she’s running her own compunded pharmacy now!

    So here’s my suggestion…have this serious talk with your physician about having a security stock of any life-saving thyroid meds. Your life depends on it! Sure, you may have to pay out-of-pocket for the extra – but the alternative ain’t pretty. Just my 2 cents on the subject…

  4. Dear Thyroid says:

    Cindi – I am so relieved that you mentioned tucking away the fear of having to rely on medication forever. I think many of us feel the same way.

    You are so smart, child. I’m so glad you took matters into your own hands by stockpiling some meds.

    She is? Her own compound pharmacy?! Wowsers.

    Cindi – excellent advice and 100% agreed.

    xo

  5. Sarah G says:

    I generally take all my prescription meds with me so I will have them in a labeled container. I also take them in a carryon bag when I fly to reduce the chance of it not making the flight with me.

  6. Monica says:

    “And then, as I understand it, the body would start to shut down; than coma; than death.”

    What the heck? I never had an inkling this could happen if I stopped taking those little pills since I no longer have a thyroid either. I hate having to depend on anything like this without it being my choice.

    Thank you, Michelle, for enlightening us, especially me, with your story. I will never leave home without having a stash available, just in case.

    ☮ ♥

  7. Miriam.L says:

    Thanks Michelle….interesting article, you raised some good points. I am in agreement with you 100%. Its only sensible to stockpile your meds for emergencies.

    I had to smile reading in your at link about the NY woman running short of Synthroid in the UK. I am surprised she had difficulty getting the equivalent of Synthroid in the UK. I live in the UK, and I totally agree with Judith Taylor of the British Thyroid Foundation comments in the article, Levothyroxine or Eltroxin as Synthroid is known in the UK is widely stocked by all pharmacies and chemists, though it may be not in single large dosed tablets, but can be easily made up to the correct dose. I hope the woman in the article managed to get extra supplies of Synthroid equiv while in the UK, and she didn’t too many ill effects by lack of Synthroid.

    I agree with you, and Cindi. I always try to stockpile all my medication in case of emergencies and take extra with me while travelling. It makes sense to keep a good supply, whether at home or away. In fact its only sensible everyone should take at least an extra weeks or more, supply with them while travelling for such unforeseen emergencies.

    I have no problem getting my meds, and even though I feel there is a lot wrong with our medical system the NHS, I feel I am lucky, at least I know I can get all my Levothyroxine and my other meds prescriped free if its approved by our NHS, so it has its compensations. I always keep at least a month’s supply in stock and thank goodness my doctor never queries my requests for extra supplies, and my local chemist/pharmacy will advance me any meds if I do run out, which I make sure is very rare!

  8. kesse says:

    wow, i’m just getting used to the idea that i’m going to be on meds for the rest of my life. i had thought about how i might not want to travel to remote, third-world countries now. but i hadn’t really thought about having problems in the US or Europe. and i definitely hadn’t thought about civil unrest or economic collapse yet. i’m on hydrocortisone for adrenal insufficiencies & armour but am still trying to get things worked out. i just finally got a diagnosis 2 months ago. i want to increase my armour & have an appt with the dr on monday. but i just got my lab results back & my free T3 is actually HIGH! wtf?!?! i’m so worried he’s going to tell me that i need to lower my dose and i really want to up it! i guess we’ll see how things go on monday. anyway, back to the point, how much do you guys stockpile? a month, several months? how long do the meds last before they start to go bad?

  9. Dear Thyroid says:

    Sarah – That is so smart, makes perfect sense. Do you also make certain that you have enough for an extra two-weeks or a month, or longer?

  10. Dear Thyroid says:

    Monica – We are dependent on our medication, to be sure. We can’t technically live without it, regardless of whether we take Synthroid (or a synthetic hormone), or NDT.

    It’s scary as shit to think that we are, isn’t it?

    We all need stashes. Can you imagine saying “I need to score some synthroid” to a dealer?!

  11. Dear Thyroid says:

    Miriam, as I understand it, and this is something we’ll all definitely find the FACTS ON at Mary Shomon’s site, http://thyroid.about.com, when we take certain brands of medication, we can’t switch. For example, if you take synthroid and/or cytomel, you can’t switch to generic because it’s compounded differently. AGAIN, I digress, I defer to Mary Shomon for the facts.

    xo

  12. Dear Thyroid says:

    Kessee – First of all, so sorry that you are now a member of the “Jacked Thyroid Club”. We welcome you to Dear Thyroid with open glands.

    Please let us know about the test results, and be sure to tell your doctor how you’re feeling. In fact, consider making a list. (I just sent one to my doctor), of symptoms.

    Also, check out these two links from Mary Shomon:
    1) Thyroid function tests: http://thyroid.about.com/od/gettestedanddiagnosed/a/bloodtests.htm
    2) Interpreting lab panels: http://thyroid.about.com/cs/newsinfo/l/bltest_values.htm

    Each bottle of pills that we get has an expiration date.

    Speaking for myself (Katie), I have not considered stockpiling until this article. Since reading it, I want to make sure that I have at least a month’s worth handy. I also want to ensure that when I travel, I have an entire month’s worth as a ‘just in case’.

    Looking forward to seeing you around. Please do connect with the community on http://facebook.com/dearthyroid. Any questions you have, don’t hesitate to post there or on the site here.

    We’re rooting for you, kid.

    xo

  13. Lisa Watkins says:

    How do you store your extra prescriptions? Here in the Netherlands the pharmacy says to store Cytomel in the fridge. I get 3 months worth at a time so I do. I get my Levoxyl in Seattle because I can’t get it here so I have a whole years worth. Maybe I should put in the fridge, too? We have a small dutch fridge and space is limited. I’ve tried to talk to the doctors here about my condition. They just said Thyrax is what they prescribe here. So I took it. I didn’t work for me. So, since I go backto Seattle to visit every year I go to the doctor there!

  14. Dear Thyroid says:

    Lisa – I wouldn’t put it in the fridge, unless it says to, I don’t think.

    Your doctor prescribes annual dosages? How often do you get blood work done?

    You’ve given me a great idea – I’m going to ask a pharmacist, friend to Dear Thyroid, to write about prescription storage, extra pills when traveling, etc.

    As far as storage, I would follow the instructions on the bottle, and, and, and consider calling your doctor in Seattle for his/her input.

    Keep us posted.

    xo

  15. michele says:

    great article michelle! i always travel with an extra supply and for that matter have a couple bottles lying around the house from when they changed my dosage up or down throughout my pregnancy. i DID notice though a huge difference in the generic and brand name pill. has anyone else and does anyone know the shelf life of the pills?

  16. kesse says:

    thanks katie & dear thyroid. while things have gotten better since i started the HC & armour it hasn’t been as great an improvement as i would like. i’ve been feeling pretty sorry for myself lately & was glad to stumble upon this site (& your fb page). i think i’ve also read almost every part of mary shomon’s about site and i’m going to try & get her books from the library this weekend.

    i’ve posted my results here: http://forums.realthyroidhelp.com/viewtopic.php?f=7&t=17966&sid=dbfcadbcfaf6cc95e23a6bf70b063b47

    i’m wondering if i have an RT3 or thyroid resistance problem. i’m really annoyed that i have to wait until monday to talk with the dr b/c i’m going to obsess over this all weekend. not that it matters, i don’t have the energy to get up & do anything.

    thanks for doing all this!

  17. Michelle says:

    Wow, so glad to have my blog posted! Thank you Katie and Dear Thyroid! Certainly some interesting points brought up by everyone. I have to stay on Synthroid brand per my Endo as I am post-cancer and need consistent levels, although that doesn’t stop my pharamacy from trying to fill generic! I’m not able to actually get more than a month supply since they are retesting my levels monthly. And we cerainly don’t want to create a run on the supplies, but just throught I’d share my thoughts on how dependent we are on so many elements out of our control. Thanks to you all for this community! :)

  18. Lisa Watkins says:

    Dear Thyroid,
    My pharmacy, Bartell’s, will give it to me because I don’t use insurance with them therefore they don’t have the insurance co. telling them they can’t. Thankfully Levoxil isn’t that expensive. I think it cost about $130 for a years supply. I’m still not brave enough to go though the doctor experience with my thyroid again here! Hopefully I’ll be able to continue to get back to Sea regularly!

  19. Shan says:

    Dear Thyroid,
    My synthroid comes with instructions to store between 2 and 8 degrees cetigrade. Thats in the fridge. Otherwise it can degrade at higher temps and not be as effective.
    Cheers!

  20. Lolly says:

    I don’t have a problem of getting Levothyroxine 3 months supply at a time, they tried to change it here in the UK to monthly, but alot of poeple were against it for long term drugs but if you think about it long term drugs should be given in 3 months supply gives you a month to refill the script as it’s something you can’t do without. When you do go on holiday and you should always take extra supplies with you you don’t know what eventualities lie ahead meaning you are stranded longer than your supply of T4 or other medication

    I store mine in a cool dark place away from direct sunlight or heat and I always makes sure I have ample supply of all three doses 25 mcg 50mcg and 100 mcg because of the constant does changes.

    Food for thought isn’t it when I went abroad I took much more medication than I needed just incase. And I always take out travel insurance which covers health treatment or emergencies you just never know scouts motto “Be prepared.

  21. CindiStraughn says:

    a tip for storing a natural thryoid stash: vacuum seal and put in a closed/dark cupboard/drawer – and don’t let it get overheated (or too cold for that matter).
    At least this is what I do with my extra natural thyroid which is sensitive to both temperature and moisture. I even keep a little dessicant thingie in the everyday bottle i use.

  22. HD inOregon says:

    My insurance also only allows for a 30 day supply, buy my levothyroxine is only about US$10 for a months, so I just buy the extra supply I need for travelling. – I also have about 4 or 5 tablets in my car, in case I unexpectedly need to stay somewhere overnight and cannot get home.

    HD in Oregon

  23. HD inOregon says:

    Another note on levothyroxine and its half-life: Since it takes about 8 days until half of the effective ingredients are out of your body, skipping a day or two, may make you feel a little hypo, but it won’t have any major detrimental effects. Skipping it for longer periods, of course, is a no-no.

    HD

  24. Zoe Rooney says:

    Hi i live in the Uk and thyroid pills free on Nhs and not a problem to come by. However i had a total thyroidectomy in March 2006 and have barely taken any meds since and since August last year complete abstinence, now don’t get me wrong feel really awful but still not had coma or anything like that although have been warned that i have to monitor my temperature very carefully in case of hypothermia and any infection could trigger a coma. Hope this helps a little you won’t die over night or for a long tim without meds in my experience xxx

  25. Michelle says:

    Zoe, thanks for weighing in with your experience. Sorry to hear that you also have had to have your thyroid removed. I hope you are under regular supervision of a doctor. Did you have cancer? I did. My Endo tells me in cases of cancer it is VERY important to keep the the synthetic thyroid levels consistent and in a state of suppressing what ever remaining thyroid tissue might be left in the body from trying to produce it’s own thyroid hormone. This, the doctors believe, is crucial in preventing a return of thyroid cancer.

  26. Zoe Rooney says:

    Hi Michelle sorry to hear about your expeiences. My thyroid was removed because it became toxic and sent me into a mental decline to the point that i was sectionned for my own safety, radio active iodine was tried first but didn’t supress it enough. For my sanity they removed it but unfortunately that didn’t resolve the mental health left behind. So was sectionned again and somehow there seems to be a link to my horrific self harm and my thyroid levels. I have found that by abstaining from thyroid meds i’m reletively normal mentally although quite depressed obviously. But now I have all the signs of coma coming and have to choose between physical health and mental. Catch 22. Not sure what to do but something will have to be decided and very soon. Either way it could kill me. But on the plus side i’ve kept my sense of humour. xxx

  27. Michelle says:

    Zoe, what a struggle you’ve been through! Thanks for sharing and I hope you and your doctor can find a solution for you. Best health wishes.

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