Monday, August 24, 2009

Thyroid Hell

I know I haven’t been posting much lately, because I haven’t had a lot of art making going on. It has been a rough year in many ways, that I won’t go into now, but one of the issues I have been dealing with lately, probably affects a lot of others too, so I will talk about my present state of thyroid hell.

I, along with a significant percentage of the population have Hashimotos disease or hypothyroidism. This is a chronic disorder that affects energy level, skin, joints, hair loss, metabolism among a list of things, basically my thyroid is losing its ability to produce enough hormone to keep things in balance. The treatment that has worked the best for me was using a natural thyroid hormone replacement called Armour thyroid, it is the only thing that has made me feel normal in every way.

Well, earlier this year the company changed the formulation without telling anyone and people started to have serious problems, then they stopped producing all together with no notice. The only other company making natural thyroid, Nature-throid, was then flooded with orders and is now on back order.

In the interim, my daughter Nina, who also has Hashimotos, and I have had to go on Synthroid. A synthetic hormone that only replaces the T4 hormone and not the T3 hormone, which together make you feel like a functioning human being. It has been awful to put it mildly. The first two weeks taking it, I had terrible joint pain and nausea and we have both had such low energy, it is hard to get much done. I feel like I did the year before I was diagnosed. Nina has been falling asleep on the couch every day and her eczema has gotten much worse with her eyelids swelling and peeling. It is so incredibly frustrating to not have any real alternatives until production on the natural formulations catch up, supposedly by the end of September.

22 comments:

  1. Judy - so sorry to hear about your problems. I have this condition in the early stages and am working with a naturopath to keep my levels normal. You have scared me a bit with these stories about the drugs.

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  2. Anonymous4:07 AM

    Judy, hugs and sympathy to you and Nina - it sounds utterly AWFUL. Best wishes that the producers catch up on back orders SOONESST.

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  3. Wow, doesn't sound like fun at all! But at least you know what the problem is. Hopefully they will come out with enough drugs soon. Are there natural things that you can eat or do to help in the meantime? I will keep your family in my prayers.

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  4. Judy, I know what you're going through. I went through many years of suffering before my Hypothyroidism was finally diagnosed, and then it was mistreated by the first Dr.! I then found a specialist who did put me on Synthroid and after about a year, I finally felt good & normal again. I know many people wish to avoid medications, but sometimes they can help. I have found relief from this medication, but it took time for the right dosage to be found and for it to be effective. Many times people think if they take a pill it will work right away - this is not the case with your metabolism (I'm sure you know this!) I hope it works for your daughter, or that she quickly finds an alternative that provides relief. My Dr. is at Medical College of Wisc. in Milwaukee if you need a referral - she has worked wonders and believes diet & exercise plays an important part in one's health, not just the medications. Get healthy soon!

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  5. Hope you and your daughter find the right solution to this soon.

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  6. Just know that me and my prayer partners are lifting you and your daughter in prayer. Believing for your meds to be available to you and for your healing. Keep us posted and May warm healthy Blessings to you. EE

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  7. I do feel for you both! This runs in my family, with two of my elder sisters, a niece and a nephew and a couple who are 'borderline'! One of my sisters has graves disease which badly affected her eyes, poor thing. I could go on but I'm sure you know all about it.

    BTW, I love your blog so if I appear to be stalking you, I'm not, just enjoying all the wonderful things you make!

    Gail x

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  8. I've just started my Synthroid regimen, but they haven't adjusted my levels to where they need to be yet, so I'm still not feeling like they say I will. I keep waiting for the energy boost and for my strict dieting to finally kick into gear and maybe drop a couple of pounds. So frustrating...

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  9. Wow; we could have had so much more to talk about at Long Beach Festival! I too am going thru this; I had no idea there were alternatives to Synthroid. I too notice my psoriosis going thru phases & the added weight gain is no picnic. My dosage was just increased (first time in a few years) and I'm supposed to go back for more bloodwork to see if the new dosage is working. Trouble is; they only gave me 30 day supply & it was out on Friday; Dr were supposed to call me to get a new script. I had to call them yesterday & now it's 4 days later with no news & no pills to take. I will ask them about the point you bring up with the T3 & T4. I want to find an alternative to Synthroid also now.

    Thank you for your helpful post! Keep me posted on what you find out from the new carrier.

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  10. Well Cheryl and Stacy a lot of us are in this boat. I was on Synthroid for a year when I was first diagnosed and slowly and steadily continued to put on weight. I was so frustrated that I was growing out of all my clothes when I was doing nothing different. Switching to Armour was the best thing, I didn't feel sped up but exhausted or irritable, which is how I feel now.

    After the issues that Armour has had, I want to switch to Nature-thyroid when ever they get supply again. I highly recommend switching to a natural thyroid, you will feel better and may actually drop a pound or two.


    Lisa, You have made a good choice to go with a naturopath, all the western med Dr.s are too influenced by the pharmaceutical companies and always put patients on synthetic which is just not as effective.

    Unfortunately, at least here in the states, you really have to educate yourself and be your own advocate to get the best treatment.

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  11. OMG! When did they change it? I have been on Armour thyroid for years, prescribed my a holistic doctor. I am now wondering if my inability to keep weight off my old, aching body is related to this. I also do not have the energy that I used to have in abundance.

    Thank you for the alert.

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  12. Wow! I'm so sorry you are going through this thyroid nightmare.
    I also was on Armour Thyroid and had to see an endocrinologist because of my pituitary gland. Another whole story I won't bore you with. BUT the endocrinologist took me off the Armour and said nothing but bad things about it. I have been on it for 4 years with no problems. She said I didn't NEED anything. Well, in the past 6 wk since I stopped it, I have gained about 4 lbs all in the midsection!
    I do hope you can get your Nature-throid soon and feel all better.

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  13. http://chickbassknitknacks.blogspot.com/

    Have you seen this blog???

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  14. hi judy, do you have to go to a naturopath and special pharmacy to get nature-throid, or is it just that western docs won't (rather than can't) prescribe it? i've been struggling with hypothyroid & related problems for about 6 years (during which the extra pounds have continued to add up; weight loss seems impossible, it's so discouraging!) and still wish for a better solution than synthroid, even though it has helped relieve some symptoms.

    so thanks for this info & i hope you can get back to your regular supplement and feel better soon, & nina too. sending good thoughts your way.

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  15. LuAnne,

    I just asked my Dr. about it. I told her I was frustrated that I was continuing to put on weight regardless of being careful with how I ate. I had begun reading up on thyroid and found out why the synthetic meds do not work as well and asked to be switched to something that would work with T3 as well as the T4 hormones. I think the pharmaceutical companies have a HUGE influence on what Dr.s prescribe first.

    There really was a significant difference in how I felt after I switched to Armour. I lost a couple pounds the first month with out doing anything. I never felt jittery or heart flutters on it like I have on occasion with the synthetic. My energy level was much better as well as my moods. In a few months when things get back to normal with supplies I would ask your Dr about trying Nature-throid. I have lost my confidence with Armour over this issue and I will be changing.

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  16. Hi Judy, I love your blog and your work and was really saddened to read of your and your daughter's struggle. It is badk\ enough being unwell yourself but is on another level when your kids are sick too.
    Love and best wishes to both of you.

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  17. Ok; my brain hurts from all this research. Does anyone happen to know what the cost is of the compound thyroid vs synthetic?

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  18. Stacy when I picked up my prescription for the synthetic it was about 1/2 the price of what I usually pay for Armour.

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  19. By the way thanks for all the kind words, thoughts and prayers everybody, I really appreciate it. I know I am not alone in this problem, so my heart goes out to all the many, many others who are also dealing with this.

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  20. Goodness Judy, that's a lot to deal with with everything else going on! Prayers for you and Nina are headed your way. Take care of you!!

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  21. A couple of years ago I had an abnormally high TSH level (indicating hypothyroidism) which in my case turned out to be due to taking excess iodine (my mistake, didn't read label carefully.) Eliminating the iodine brought the TSH number back to normal levels within a couple of weeks. I'm quite sure that if I had gone to an endocrinologist, medicine would be the only solution offered. (I called ahead and he did no dietary counseling at all, so I cancelled the appointment.) My sister had various weird symptoms and an enlarged thyroid which went away when she stopped eating soy (a goitrogen). My point is, diet can make a big difference and it behooves us all to double check what we're taking in.

    The other thing that helped me to gradually lose 20 pounds was following The Leptin Diet 5 rules, easily found online, though I highly recommend reading one of Byron Richards' books about it. Our entire bodily system is integrated, with one thing affecting another. The Thyroid Diet book has a lot of good info also. Best wishes to all of you who are dealing with this issue.

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  22. I have been taking porcine thyroid tablets for around five months and I have absolutely noticed a huge difference. It really works well!

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