Awful side effects on Armour
I'm thinking of stopping my thyroid treatment.My symptoms are much worse after starting thyroid treatment in October, 2010. I started with 1/2 grain Armour, then have moved up gradually to 1 1/2 grain, split.
As time goes by, after a brief period of feeling better, I am doing worse. My current labs indicate that my TSH is near 1, but the free's are near bottom of the range.
I was going to switch to ERFA when it arrives (from NZ), but I'm doing so poorly I'm thinking of stopping altogether. The last few nights, I have had horrible adreneline surges that start the moment I drift off to sleep. I wake in a panic and my normal b/p and pulse are extremely elevated until I walk around and calm down. This is happening even more in the last few weeks. Normal b/p in the day, slightly elevated pulse, then when the surges hit...wow! Terrifying.
Since my October labs said I'm extremely low on progesteone, I started a compunded transdermal three nights ago....first night was okay, now everything is a mess.
I'm wondering how to back out of everything....thyroid meds, progesterone, etc. I'm thinking as bad as I was, I feel even worse now.
My doctor hasn't returned my fax (from last week) or phone call (yesterday) about my concerns...I am so bad at figuring this out...labs say I'm not getting enough replacement, but when I try to go up, I get horrible heart palpitations, anxiety, etc. I don't think my body wants its metabolism adjusted.
I don't have Hashimotos, as far as I know, because I had almost no antibodies on tests.
My area of the world is BAD for thyroid treatment..even the Yahoo group for my state has problems finding a good doc. Some of my problems may be from perimenopause...apparently it is dangerous to be a 49 year old female. That is a whole other uncharted world for me.
So, my question for myself is do I wean off thyroid and just live with the old, less dibilitating symptoms? This new normal is much worse than the old one.
I don't even know how to wean off of it...I thought it was going to help, so now I'm just at an awful crossroad with not a clue where to go from here.:dunno: I actually think all my efforts have made things much worse.
I knew it was going to be tough, but this is harder than I thought.:eek: I love reading how some of you are feeling better...that is an encouragement!
Here's where I started:
TSH 2.30 (.03-5.1) but my desired level: Less than 1
FT4 1.21 (.73-1.95) but desired level 1.34
FT3 2.8 (2.3-4.2) but desired level 3.725
Here is where I am:
TSH 1.13 (.45-4.500) desired would be Less than 1
FT4 .090 (.82-1.77) desired would be 1.295
FT3 2.8 ((2.0-4.4) desired would be 3.80 (no meds prior per advice)
I'm so miserable. I feel sorry for my poor husband, who witnessed an awful night last night, and my kids, who were so hopeful to get their mommy back. I kept thinking I would round a corner and be better....
My mom went through similar issues.. she was going through the menopause/thyroid stuff almost simultaneously but thought it was all menopause not thyroid. She also really hates the Armour and says it makes her feel sick
When I was 19, years after I got diagnosed and there was little information on the internet and I trusted my dumb endo, I gave up on meds entirely because they weren't helping, just making me feel sick. I feel I've done irreparable damage now being off meds entirely after being on them for a few years.
I would suggest an RT3 test and to look at the graphs and pictures on the site Jorose found (how exciting!!). Here it is again:
National Academy of Hypothyroidism
The graphs are especially helpful. Your husband and your children love you and it really sucks that it's hard on them, but there will be times, and I'm sure there HAVE been times when you stuck it out for them when they needed you; it's your turn now. Let them take care of you and love you - husbands in particular need to do it.
I think you are feeling crappy because your meds are not the right type/not the right dosage for you. I would not go off of the meds entirely; maybe try splitting the pill and taking that and then seeing how you feel.
One of the trickiest things about this disease is that a lot of hyper symptoms overlap with hypo symptoms - anxiety for instance. Anxiety also causes palpitations and a racing heart in some people, which are hyper symptoms.
If you're really feeling unwell, consider making an appt with a doc out of state if you can afford it. Drive or fly, go away for the weekend with the kids and get some right meds and treatment until you can find a doc that's closer. It IS worth it. I was planning to do this once until I found my current doc and the office was very nice about it; just make sure you let them know you are coming from very far away and bring all of your labs and history with you. It's amazing how the crappy doctors are so unhelpful in every way, but the ones that can help really do try to do everything in their power to help. My doctor right now, that my mother sees as well, emails us and we can email him if we have questions/concerns about our treatment. You need to find a good doctor, no matter where he/she is located; it's crucial.
Lastly, stop stressing! It's so hard but you have to because it only makes your disease worse. Your FT3 is very low which is probably why you feel so terrible, but you and your doc (or a new doc) need to figure out why that is exactly first so you can start getting to a better place. Don't give up!!
Thank you, Moopie86..what a kind and thoughtful reply. Bless you for taking the time to write...
I am looking over the link you provided. That looks very helpful.
I'm praying that my next step will be the right one, because the one I'm on now has left me so exhausted I can barely type. I've never heard anyone describe the adreleline surges that I'm having at night. My husband stayed up to watch it this time...the moment I fell asleep my whole body would jolt awake and I'd leap up and be so frightened. It happened over, and over and over and it has been this way for days, but I don't ever wake him up because of his work schedule.
Anyway, maybe it is a good thing he saw it...though it is hard to watch, I'm sure. He knows what I'm normally like, and this is not normal. Something about what I'm doing is making me worse.
Anyway, thank you again for writing. You have been such a blessing to me.
I am so sorry to hear that you do not feel well, and sorry to hear you feel worse on Armour... :sick: I had the same experience with Armour, and nearly threw in the towel myself until my doctor (who is a big natural promoter) offered me the generic for Synthroid and Cytomel. I am on both meds now, and it is just wonderful. Three of my colleagues also had the same experience on Armour. I just wished I had given it less time, because it was real set-back for me.
I have learned though that if you really need thyroid medicine, you have to take it. The thyroid works in concert with so many other functions in your body. It is frustrating, but when you get it right it is sweet. Hang in there and maybe give the synthetics a try. I have to take both brands made by Mylan because they use much, much less cellulose...That may have been the problem with Armour for me--could not metabolize it. Please don't give up! You deserve to feel well! :console:
Have you tested your adrenals? This sounds a bit "adrenalish" to me.If your adrenals aren't producing enough cortisol your body can't tolerate the incoming T3 (which is the stuff in Armour that makes us feel well)
You can go to canaryclub.org and order a 4xday saliva cortisol test, come back here and post the results and we can help you from there.
Sounds like this could POSSIBLY be part of the problem.
Your latest FT3 is tanked, however it's not accurate since you tested fasting. Here at LCF is it recommended that you test 4 1/2 - 5 hours (no earlier or later) after your morning split...as Pam used to say (patient advocate on the forum here, now retired, unfortunately for us), what are you testing if you have no T3 (The stuff that makes us FEEL well) to test? So testing while fasting isn't really giving you an accurate picture. But I'd get those adrenals tested if you haven't. That needs to be ruled out. I'm sorry you're in such a crappy thyroid state, you aren't the only one if that's any consolation (I know it's not :( ).....hang in there, everyone's here to help you!
Augirl, thank you so much for your post. I know I had undiagnosed hypo for so long, I've gotten everything out of balance. I think I underestimated the effect of the cellulose in the Armour. I appreciate the encouraging words from all of you here...when you are sleep deprived and frightened...it is not pretty.
I have been especially discouarged with my doctor. When you read about side effects for a drug, and you have many of them, the drug inserts say...contact your doctor immediately. I was worried my racing heart and high b/p (usually normal) at night was doing harm, since this has been happening much more frequently.
I don't know how to wean off a drug...I have been waiting for ERFA to arrive, and was going to switch over. However, it isn't here, and I can't go on with Armour anymore.
So, since I don't know what else to do, I didn't take anything yesterday, and was able to sleep without the adreneline surge.
Now, since I feel like I'm without a doctor, I don't know what to do. Texas is a tough place to be for thyroid.
Anyway, I am so glad you told about your experience with Armour...not that I'm glad it happened to you, but that you found a good solution. That is wonderful.
Jorose...you are so right about the adrenals. I am thinking the "rush" of adreneline I'm feeling MUST have something to do with cortisol. I also read somewhere that for some, a lot of the T4 conversion can happen at night, and it is totally stressing my body when I lie down.
I signed up for a group yesterday that is a branch off from a Natural Thyroid group, except it focuses on all the issues dealing with weak adrenals or adrenal failure. It was mind numbing to look at all the "Welcome" posts and get an overall idea of what happens to your body when your adrenals are out of whack.
I think I will be a poster child for what not to do when starting thyroid replacement. However, in my defense, I live in an area, according to Pam, that is very, very hard to find a doctor that "gets it". I thought I was doing good to convince a doc to run the full thyroid panel and prescribe Armour.
I do appreciate your comments on the Ft3 being off because of no meds beforehand. I did check with this group and the Texas thyroid group before taking my first labs, and everyone said DON'T take meds beforehand, especially with this doctor and in my area, because she tends to undermedicate and would have not been happy if my peak point had been high, even if it was only for a few minutes right when I tested.
This forum has been a such a blessing for me. I know I probably shouldn't have posted such an awful post yesterday, but I was scraping bottom with no sleep and fear. I will always be grateful for those who come along to say, "Hang in there.":)
I've done the no sleep thing before while breastfeeding, I always considered it my honor to get up with a baby at night when needed. However, this kind of no sleep with heart pounding coupled with anxiety, NOT fun.:stars:
Off to read my new adrenal group. I'm going to get informed on how to do the testing before I run off pell mell and do it wrong...
Thanks again to all.:notwrthy:
Spoon, I am so sorry you are going thru such a rough time trying to get back to better health. :hugs: It's my understanding that Texas has one of the best Yahoo groups for thyroid. Inatic frequently posts about it and I am sure you have good thyroid docs in Texas! Can you search or start a new post asking if anyone has recommendations for docs close to you? Don't give up!
There could be several things going on with you. Have you checked ferritin, B12, adrenals, sex hormones? There is a general consenus that if you are not optimized for other hormones, treating thyroid is quite a challenge. I first had to heal my adrenals with rx'd HC, then up my ferritin and only THEN did I have success using natural thyroid.
The new Armour is not what the old armour was and so many people have switched to ERFA or other sources of natural porcine because they did not do well with it.
I was just like you when I first started--on only 1/2 grain, then 1 grain, I felt WORSE than when I began. And I was crushed and so lost, after 4 years on my quest for better health and thinking I finally had a path to take, I feel like crap.
And here's what Nonstickpam told me, which was my saving grace: When you first begin supplementing your own thyroid with the porcine/Armour, your thyroid says "oh look, here's something that is going to help me do my own hard work. I'm so exhausted so now that there is someone here to do the work for me, I am not going to work as hard, maybe not at all." And you tank because your own thyroid stops working and you are not yet optimized on your meds.
Of course, you could have so many other things going on and I do think it sounds like your adrenals are not quite right. Is there any chance your current doc will work with you on those?
Keep up the good fight...there is a way to get better, I promise! :hugs:
Iron and VitD needs to be tested too! Hey, Dr Hotze is in Texas, but he's pricey and I think I remember Pam said he wanted you to take his thyroid or something like that (dunno, don't quote me on that) but at least he understands how this works.
Maybe look into him? Hotze Health and Wellness Center.
Iron, ferritin okay.
D very low, but I'm supplementing with Carlson's drops.
I think I messed myself up by starting treatment without checking cortisol levels first...just wanted to get it done, and doctor didn't want to do the tests...thought I could slide by the easy way. Well, it didn't work.
I slept last night because I didn't take any thyroid meds yesterday...or today...now I know I'm a ticking time bomb.
I put the word out on Texas yahoo group. They are not happy with my current doc to say the least, but I'm assuming they probably are shaking their collective heads at me, as well.
I need to focus on adrenals and get some good advice how to tread water on the thyroid and get my body in shape for having a working thyroid.
Lisa46, I loved your quote from Pam...she is a treasure, for sure. I think MY THYROID is saying at night, "Let's play KICKBALL with Spoon's heart, and play blow up with her blood pressure just for fun." Well, I guess I gave it permission when I gave it incoming thyroid hormone to play with without rules.
Thanks again to all!
Spoon, I didn't see your post about already visiting the Texas thyroid board.
I, too, was told to NOT take any thyroid at ALL before I tested, and that advice came from some very respected folks here as well as mods on other sites.
Spoon--there are some self tests you can do at home for your adrenals--you'll find them on the Yahoo adrenal board. They are not totally definitive, but at least you can get an idea if yours are fried!
My heart just breaks for all of the people on this board who struggle so to get their health and their lives back. I wish you much success Spoon!
Suggestion if you can afford it Spoon....test with no thyroid as they're telling you to do so your doc doesn't freak out...but so YOU know what's going on with the levels testing 4 1/2 - 5 hours after your morning split, you can go to healthcheckusa.com and order their basic thyroid panel (TSH, FT3, FT4). There is a promo code...12345 for a discount, I believe that brings it down to 75 bucks. They send you to a lab near your house (one that you choose) and your results are available usually within 2-3 days online. Then you can keep your doc happy, but get a more accurate idea of what's going on for your own information.
Just so you know, I had big problems with NDT when I got to 3 grains (but it can happen with as little as 1 grain), went hyPER and had to stop to work on my adrenals. It was NOT pleasant...heart palps, panic attacks, massive headaches, you name it, similar to what you've been going through. Doc took me off for a week and started me back at one grain split while I was working on my adrenals....(my VitD was tanked too, had to bring that up as well) I'm still not optimized, it's slow going when you have 'other' issues like I did, and it appears, you do, as do so many others. Hang in there, I made it through that and you will too! :):)
Jorose, how are you working on your adrenals? There are so many ways. Will you stay at 1 grain until they are healed? How are you testing for them?
Such a delicate balance, isn't it? :hugs:
Jorose, I am really appreciating your imput. I think, since my doctor has STILL not returned my calls/fax about my side effects, I'm just not sure what my next move it. Ordering my own tests is an option, but I know I still have to find a doctor that can look at my adrenal situation and help me there.
From what I have gathered, adrenals require a lot of time to heal. I'd be interested in knowing what your doctor said, too, like Lisa46. However, I realize your situation, though similar, is different from mine...so I need to find a doc to help.
My Texas yahoo group admits it is hard to find around here, so like moopie86 suggested, I may have to travel to find relief. Ack. However, I'm very glad you suggested Dr. Hotze. I may run it by the yahoo group and see if they have had experience with him...He is in Katy, TX and that would be a haul for me...but I'm obviously in need of someone who will at least listen to me and return my calls.
You know, I think I am just flat-footed that when I called my doctor about my obvious reaction to my thyroid replacement, she won't even call me. I showed some concern at our visit two weeks ago, but I wasn't like a basket case or a crazy person. I was doing everything she had told me to do. Okay, I'm venting...and I'll stop.
Anyway, thank you again. I'm going to be watching your progress closely...you seem to really be working hard to get better, and I'm glad. You have done a lot of advocacy around these boards, and it is appreciated!
Lisa46, you have the gift of compassion! Thank you so much. You have no idea how much it helps someone in my situation to have a sympathetic ear.
Like my boys say about their little sister when she starts to whine a bit about a minor cut or illness..."Mom, her sympathy tanks are running low...let's give her a hug and some sympathy to get her going again." Wise fellows, aren't they?
My tanks were running low, and you all have helped so much.
(I have slept 3 nights in a row now with only minor wake ups, nothing as scary. My pulse is 78, b/p is 118/78...but I haven't taken a dose of Armour in three days. I know, probably unwise, but I'm still waiting for doc to call....and ERFA to arrive...)
Wow, you must REALLY not have been ready to start taking any NTH, Spoon. For you to finally get good sleep and feel better is fabulous!
Travel to find a doctor? Heck, at one time, I was ready to fly out to Pam's doctor, I was so frustrated. Then, after 5+ docs (ie a$$hats), I found one who quite frankly, let me educate her and she agreed to partner with me. THAT is priceless!
I do remember Pam saying that sometimes you HAVE to go back to zero with your thyroid meds and start all over again. So don't be too concerned about messing anything up. It's a journey, girl...I just wish you would have been one of the fortunate ones to get it right the first time. On second thought, not sure there is anyone who is that lucky!
It only took me 3 months to heal my adrenals, Spoon! There are all kinds of methods, but I am so glad that I went with the rx'd HC...even tho I did puff up like a balloon and gain 10 pounds, it was still worth it.
May I steal your boys? That compassion obviously comes from their mom! I can't wait to use the "Sympathy Tank" !!! Hugs ~~ :hugs:
I wanted to go straight to HC for the adrenals but I've got metabolic syndrome (high cholesterol - bad breakdowns, BP problems, and most importantly high fasting glucose - of course this is ALL due to low thyroid) So, because of the blood sugar problems, doc didn't want me on HC because HC can raise the blood sugar, didn't want to set myself off into full blown diabetes. So we've been treating with supplements (Chromium and cinnamon for the blood sugar) and some pharmaceutical grade Adrenal support supplements. I'm due to go back again for 2 hour fasting glucose testing, A1C etc soon. We'll see if the chromium and cinnamon have helped stabalize the sugars. If they have, then I can go to HC and stay on the supplements as a precaution. If not, I'll go on metformin for the blood sugar and straight to HC...she really wanted to hold off on the metformin for the sugar problem, felt she could get it under control with the chromium and cinnamon. I really feel I need the HC, am still having adrenal symptoms so the Adrenal support may be helping, but I don't feel it's fixing the problem completely. We'll test my adrenals again before the move to HC is made if my sugars are stable (and as mimers says, you have to be off all adrenal sups for a good 2 weeks to get an accurate reading) So I am now at 2 grains of NDT, and holding my own, but I'm still hypo, but 'tolerably' hypo if there is such a thing, lol! At least I can SLEEP again, I had serious insomnia that almost drove me insane. 3 grains was my total 'sweet spot', all symptoms went away, I felt great until about 5 days into it, that's when I went hyPER and had to start all over again. So I've felt what it feels like to feel "Normal" again and it was the best feeling in the world! It's been a long haul, I was diagnosed at the end of 2009. But I will get there, and so will you! Some folks do fine on adrenal sups, if the adrenals aren't tanked...mine were...however I was also low in progesterone (taking transdermal) and my VitD was tanked as well - iron needed to come up some and ferritin and B12 were good. These all play a role, as well as the adrenals, into whether or not your body can tolerate/accept the NDT. So my point is, hang on....you're just hitting some bumps in the road, as I and so many others have, that will eventually straighten out once you get other issues under control (Saliva testing for the adrenals is best) :hugs::hugs: Thanks, Lisa! It is indeed a balance! If you can't find a doc, I'd really suggest going to see Hotze, at least he UNDERSTANDS this disease! Same thing with me Lisa, doc isn't that great with thyroid, she's best at BHRT, but at least she has half a clue and has been working with me as I've gotten more of an education about all of this. She's very open to learning more, and that's half the battle right there! I WISH I had seen a thyroid savvy doc from the get go, but as everyone knows, that is a pipe dream for so many. So I'm grateful she's willing to work with me and is open minded!
Well, my doctor's office called. Staff person said doctor prescribed a beta-blocker for my heart palps. She said if it were thyroid related, it would be 1-2 hours after taking hormone.
Palps stopped when I stopped the Armour.
Sigh. I just listened and thanked them for the call back.
I'll keep reading about adrenal support. Wish I could understand it all ....seems so complex!
Anyway, thought I'd just send this update...
Pam used to talk about "block and replace" maybe someone will chime in on that...can't remember exactly what she said, but I believe it had something to do with beta blockers being used while increasing dosage...however, you still need to get all the stuff tested that we posted about to rule it out! HANG IN THERE!!!
Ok forget what I just posted above...here is a link about block and replace.....Hypothyroid & Hyperthyroid at the Same Time - Thyroid Health
Did you TELL them the palps stopped when you stopped the Armour??
I don't have Hashimotos...no antibodies...yet... I should say, so I don't think I'm cycling to hyper from that...I think it is more a direct result of a "leaky boat" trying to run like a "mighty steamship" before patching a few holes.
I'm bottomed out on progesterone, but am just starting transdermal at night. I think I fall into the second suggestion you made, Jorose, on the adrenels. That was an excellent link, so thank you very much.
I searched this LC thyroid site, and saw quite a bit from Pam regarding block and replace. I miss her sense of humor about things...but she could make her point. I still may not fall into her category...again, because I don't have antibodies.
I had told the doctor in a phone message I would stop until I knew what to do...but they didn't seem to remember on the phone call, and since I had pretty much decided maybe they had forgotten all about their patient that was palpitating and heart pounding out of this world into the next...I didn't really say much.
More to research. Much to think about. :stars:
Thanks again to all.
Dr. Andrew Jones
The Womens Health Institute of Texas
He has alot of Info. on his website about Thyroid..
I take several of his supplements...including Iodine ...It has really helped me.
I also had a bad reaction to Armour..was told it had to do with the new fillers.
Glad to hear he's helping you Janeann. Since spoon isn't showing any Hashi antibodies, iodine would probably be ok. Hashi's and iodine is a no no (all kinds of posts all over the forum from Pam and others about it) Shouldn't take it unless you have an iodine loading test first though, did he do that for you Janeann? Curious :)
I have a list of doctors in Texas who specialize in bioidentical hormones.
1. Barry Beaty, D.O.
North Texas Institute for Healing and Wellness
Dallas Mesotherapy and Fort Worth Mesotherapy Services - North Texas Institute for Healing and Wellness
2.Sakina Davis MD
woodlands wellness and cosmetic centre
The Woodlands, TX 77380
3.Linda Ho, MD
Anti-Aging and vitality centre of Dallas
6101 Chapel Hill Blvd.
Plano, Tx 95093
4. Steven Hotze, MD
Hotze Health and Wellness Centre
20214 Braidview Dr. Suite 215
Katy, TX 77450
5. LifeSpan Medicine
Christian Renna MD
David Lancaster, MD
2706 Fairmount St.
Dallas, TX 75201
6. Alice Pango, DO
South Plains Bariatric Clinic
3303 University Ave.
Lubbock, TX 79411
Lubbock Bariatrics | Lubbock Weight Loss and Dieting
7.Jose Reyes, MD
12730 IH 10W, Suite 306
San Antonio, TX 78256
8.John Sessions DO
1609 S. Margaret Ave.
Kirbyville Tx 75956
Megga, have you had any feedback from this list?
No, I am from Canada. I got this list from Suzanne Sommer`s book, Knockout. She has a book out called Breakthrough, where she promotes bioidentical hormones as the way to go. Bioidentical hormone clinics would be more inclined to deal with natural thyroid than regular doctors.
Thank you Janeann and Megabeef...I really appreciate the suggestions. I'm looking for a doctor that can handle my perimenopause and non-Hashi's thyroid...and I can communicate with a bit better. I have some research to do, and the names you provided will be a big help along those lines.
I have always wondered if I could have prevented where I am now if I had dealt with the hypo early stages with something to help me convert T4 to T3 more efficiently. :confused:
I actually don't even know why I don't have Hashi's...so I really don't have a good handle on what, in my particular case, is causing the low thyroid...
I saw this article on the TX thyroid website that someone mentioned...it is about how being hypo can make perimenopause or menopause much worse:
(Interview with Mary Shoman and Dr. Shames)
The Thyroid/Menopause Connection -- Information from Richard and Karilee Shames, Authors of Thyroid Power / Thyroid Disease Information Source - Articles/FAQs
Thanks again to all...you have been a big help.
Waiting for ERFA
Trying Natural Progesterone Cream
Ordering Saliva Test tomorrow
Researching Adrenal Support information
Looking for Doctor Thy Roid Expert
It would seem that very few doctors with that combination of skills exist, but they must be out there somewhere...the challenge lies in finding them! Hope you do! :hugs:
Hashi`s is caused by the immune system attacking the thyroid gland. That is not cool. It is a very good thing that you do not have that. Dr. David Brownstein from Flint Michigan wrote a book about arthritis, and he mentions that he believes that autoimmune diseases are caused by micoplasma. Micoplasma are very teeny tiny bacteria that get into the body and settle in. The immune system knows that it is there, but because micoplasma is so teeny tiny, it gets deeply imbedded between normal human cells. The immune system then has to destroy normal human cells to try to access the micoplasma, and that is where autoimmune diseases start. he treats Rheumatoid arthritis with IV antibiotics with great success.
My brother has lupus, and when I told him about this finding, he said that anytime he goes on antibiotics for colds, etc., his autoimmune symptoms clear up.
Many people get thyroid problems in regions of the world with low iodine levels in the water, and where the zinc and selenium levels are low in the soil. Viruses and stress and genetics are also factors.
health food stores have suppliments which help people convert t4 to t3 better. These suppliments have tyrosine, seaweed, thyroid granules, etc. in them.
If you don`t go to a regular doctor, maybe try a naturopath to see what their input is.
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