Hashimoto's is ruining my life.. can you help save me?
dawnagetsfit
Posts: 81
I could really use some help because I feel like I'm reaching the end of my rope. Two years ago I was diagnosed with Hashimoto's (autoimmune hypothyroidism), at that point my body hurt so badly, I slept all day and never felt rested, I ate out of control when I was awake, I was losing hair in clumps, my facial acne was relentless and I had male-like facial hair, just to name a few symptoms. I was told it would take about a year to get stabilized on synthetic T4 and for my body to begin feeling the changes.
It's been two years and I have been on a stable dose of 137mcg thyroxine for nearly 10 months (TSH around 2-3, it was originally close to 17) but still I feel terrible. I'm not as tired, but my energy drags and my body still aches (I also have Ehlers-Danlos syndrome and have osteoarthritis in at least my hips and knees so this further complicated and blurs the line between EDS and Hashi's). My acne has gotten only slightly better; but I think it's because I changed my regimen and products to only Witch Hazel and essential oil spot treatment (Tea Tree and Lavender). All my other symptoms remain.
Oh and my memory.. my mental fog is still so bad. I feel like I can't function. It is scary and embarrassing so I avoid all social situations (I don't work either). I use to take ADHD medication which helped me feel better mentally, function and eased my anxiety but I did not like the emotional roller coaster or the idea of what it was doing to my cardiovascular system (big risk in the family). I also knew this was just a temp "fix" and I am the type of person that wants to find the ROOT of the problem and work from there, not just treat all of the problems that arise from it. My doctor has a different approach though; time for a new one, I just don't have the energy....
So far my doctor's idea of treating my Hashimoto's is to just give me Levothyroxine until my TSH numbers look good. I understand this method works for most people but it's not for me. He never mentioned any special diet or foods to avoid. I've been self advocating for a long time but I've come to a point though where all this overwhelming information is lapping each other and I don't know where to begin.
Recently I have become so completely overwhelmed to the point of bawling my eyes out, boughts of depression and letting my healthier eating slip up badly. This quality of my life sucks and I feel like I don't have the time or energy to put myself on hold while I find a new doctor. I need to make new changes now (whatever they are) while I attempt to find a better doctor.
For close to a year I have been transitioning in to healthier and cleaner eating, incorporating a lot more fresh fruits and veggies, steaming my food and weaning off processed junk, learning healthy substitutions, only drinking water and unsweetened high quality green tea, etc.. In addition to healthier eating, for two months I have been doing 1 - 2 hours of light-moderate walking a day 5 days a week and drinking about 100oz of water a day. My hips and knees feel a lot better after all this walking and I eventually want to do strength training but I have to attend physical therapy first (I have had a long ongoing shoulder/neck problem).
I have expected to feel a change by now.. to feel healthier, to have more energy.. To just feel better, but I don't feel much of a change at all. I just feel disappointed, like my problems are out of my control and the fault of my thyroid, some other autoimmune complication or something else entirely.
Or is it my diet? Am I not eating clean enough? That is where I stand right now and this is where I am begging my fellow MFP'ers to help me out.
The things I am considering changing, not all at once, are as follows and I would appreciate any and all input:
- Eliminating Grains, dairy (because of the hormone/inflammatory debate), lactose, corn, gluten, sugar, nightshades (basically process of elimination)
- Trying the Whole30 challenge (eliminate grain, dairy, sugar for 30 days)
- Trying Paleo or Primal
- Switching from synthetic T4 to desiccated pig thyroid
I don't even know if my insurance will cover desiccated thyroid medicine. I read a lot of sucess stories with the desiccated thyroid but then I also read elsewhere that pigs are fed terrible diets and the "dirtiest" animal to eat.. So wouldn't that mean the desiccated thryoid medicine is contaminated? Or are those pigs raised differently? This leaves me thinking I should try this last, if needed.
I don't know what else to do, which of the above to do or in what order or really even how. I need direction, inspiration, hope, sucess stories, advice, resources.
Can you please help me?
It's been two years and I have been on a stable dose of 137mcg thyroxine for nearly 10 months (TSH around 2-3, it was originally close to 17) but still I feel terrible. I'm not as tired, but my energy drags and my body still aches (I also have Ehlers-Danlos syndrome and have osteoarthritis in at least my hips and knees so this further complicated and blurs the line between EDS and Hashi's). My acne has gotten only slightly better; but I think it's because I changed my regimen and products to only Witch Hazel and essential oil spot treatment (Tea Tree and Lavender). All my other symptoms remain.
Oh and my memory.. my mental fog is still so bad. I feel like I can't function. It is scary and embarrassing so I avoid all social situations (I don't work either). I use to take ADHD medication which helped me feel better mentally, function and eased my anxiety but I did not like the emotional roller coaster or the idea of what it was doing to my cardiovascular system (big risk in the family). I also knew this was just a temp "fix" and I am the type of person that wants to find the ROOT of the problem and work from there, not just treat all of the problems that arise from it. My doctor has a different approach though; time for a new one, I just don't have the energy....
So far my doctor's idea of treating my Hashimoto's is to just give me Levothyroxine until my TSH numbers look good. I understand this method works for most people but it's not for me. He never mentioned any special diet or foods to avoid. I've been self advocating for a long time but I've come to a point though where all this overwhelming information is lapping each other and I don't know where to begin.
Recently I have become so completely overwhelmed to the point of bawling my eyes out, boughts of depression and letting my healthier eating slip up badly. This quality of my life sucks and I feel like I don't have the time or energy to put myself on hold while I find a new doctor. I need to make new changes now (whatever they are) while I attempt to find a better doctor.
For close to a year I have been transitioning in to healthier and cleaner eating, incorporating a lot more fresh fruits and veggies, steaming my food and weaning off processed junk, learning healthy substitutions, only drinking water and unsweetened high quality green tea, etc.. In addition to healthier eating, for two months I have been doing 1 - 2 hours of light-moderate walking a day 5 days a week and drinking about 100oz of water a day. My hips and knees feel a lot better after all this walking and I eventually want to do strength training but I have to attend physical therapy first (I have had a long ongoing shoulder/neck problem).
I have expected to feel a change by now.. to feel healthier, to have more energy.. To just feel better, but I don't feel much of a change at all. I just feel disappointed, like my problems are out of my control and the fault of my thyroid, some other autoimmune complication or something else entirely.
Or is it my diet? Am I not eating clean enough? That is where I stand right now and this is where I am begging my fellow MFP'ers to help me out.
The things I am considering changing, not all at once, are as follows and I would appreciate any and all input:
- Eliminating Grains, dairy (because of the hormone/inflammatory debate), lactose, corn, gluten, sugar, nightshades (basically process of elimination)
- Trying the Whole30 challenge (eliminate grain, dairy, sugar for 30 days)
- Trying Paleo or Primal
- Switching from synthetic T4 to desiccated pig thyroid
I don't even know if my insurance will cover desiccated thyroid medicine. I read a lot of sucess stories with the desiccated thyroid but then I also read elsewhere that pigs are fed terrible diets and the "dirtiest" animal to eat.. So wouldn't that mean the desiccated thryoid medicine is contaminated? Or are those pigs raised differently? This leaves me thinking I should try this last, if needed.
I don't know what else to do, which of the above to do or in what order or really even how. I need direction, inspiration, hope, sucess stories, advice, resources.
Can you please help me?
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Replies
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First of all, if you're unhappy with what your doctor is doing, get a second opinion. Or, a third. Remember - doctors are supposed to work FOR us. We pay them, and pay them big, for their services. Too often, we just take what they say and deal with the consequences. If you had a problem with your car and were unhappy with your mechanic, you'd try another, right? Just because your doctor has a degree doesn't mean he/she knows everything.
Sounds to me like your levels are still too high for you. I function best when I'm below 2, and I've heard of people who need to run less than 1.
Levotryroxine has always worked for me, but it doesn't for everyone. Lots of folks on this site like a product called Armor. My understanding is that it might not be available everywhere, but it's worth asking about. I'd recommend searching the message boards for Armor (maybe spelled Armour?) to get some more info from real folks taking the product.
Bottom line is, don't give up hope.0 -
I have Hashi's as well and after cutting gluten out of my diet (I had already cut dairy out) I feel so much better! I don't even miss it like I thought I would. I could tell a huge difference in how I felt after only two days. I've read several books that state that more often than not gluten intolerance and hashi's go hand in hand. Good luck and stay positive.0
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check out the website stopthethyroidmadness.com
also google mary shomon
A weath of information is available on-line.
If you decide to switch from a synthetic thyroid hormone to armour. - it works on both t3 and t4 hormone levels.
It is not unusual for doctors to ignore women about their thyroid issues. If they can't figure it out in 15 minutes you are basically *kitten* out of luck - or they will offer an anti-depressant to shut you up.
Find another doctor, keep searching until you find one that listens to you and works for you.
p.s. - the first synthetic I was prescribed was levoxyl. It was poison for my body. The joint pain in my body was relentless. I never had it before the medication and it cleared up within 4 weeks of stopping it despite the protests of the endocrinologist.0 -
There are doctors out there that will prescribe Natural Dessicated Thyroid (NDT) -- and my insurance company does cover it -- although it is fairly inexpensive. On stopthethyroidmadness.com they also talk about over-the-counter natural thyroid that they say works almost as well.
Ask your pharmacy to tell you if they know any doctors in your area that prescribe NDT. Your doctor is treating your lab tests, he's not treating you. You are a person with symptoms and sadly most doctors only treat TSH - not the person.
I spent 15 years on Synthroid getting worse and worse... but I am on the path to getting better. Undertreated thyroid disease can lead to other issues -- you don't have to accept what this doctor is telling you -- fire his *kitten*.0 -
My son has Hashis' and he is an avid soccer player but was still just feeling tired and run down all the time, obviously not from exercise...so we ended up reading up some info about hashis' and took him off gluten a little over a week ago.Within days he was sleeping better and waking up more rested and he went to a soccer practice and said he felt great, He didnt even need to use his inhaler(which is unheard of).....Good luck0
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So sorry to hear how horrible you're feeling. I know I could feel my body spirally out of control when my TSH hit 4, and my doctor at the time told me that was "within normal ranges". In 3 months, while on Synthroid, it raged to 58! I switched doctors who tested me for Hashi's and confirmed I have it. We started a 2 year process of trying different meds to get me stabilized, including several trips to the ER for Hashi's related complications. Fortunately, we have finally been able to get me stable with a combination of Synthroid and Armour. This is the only way I feel normal.
Does your doctor test anything other than your TSH? Does he check your T3 and T4 levels to see if you need combo treatment? He should, or find another doctor who will. I think I found my doctor on the Stop The Thyroid Madness site, as there is a section for patient referrals of physicians who actually treat the underlying Autoimmune disease and work with you.
Are you taking other supplements? Supplements can both help AND hurt. I'm absolutely sure that iodine was part of what led to my Hashi's going bonkers, and a lot of "thyroid supplements" have a fair quantity of iodine in them. If you aren't iodine deficient, DON'T take them! With Hashi's, the cause of your hypothyroidism is autoimmune disease, NOT iodine deficiency.
What other supplements do you take and when do you take them? I take my thyroid meds first thing in the morning before I eat or take anything else, and don't eat for at least an hour. Any supplements I need (I'm also anemic) I take in the evening with dinner because many things hinder the absorption of your thyroid medication.
What kind of clean eating are you doing? There are a lot of veggies that are bad for Hashi's patients and it's things you wouldnt think of - broccoli, soy, cauliflower, brussel sprouts to name a few.
Research your disease - Stop the thyroid madness is incredible and has a lot of good information. Find another doctor. As for Armour, it's not expensive. I don't have prescription coverage and it's like $12/month.
Take care of yourself!0 -
In the very beginning he did a lot of tests and I recall them involving free T3 and T4 along with several other things. I had expressed to him my concern about my adrenals and he said the tests would show that, though he did not seem concerned. He also checked my B levels. My mom had Hashi's too so I think he was treating/testing me based on what he found with her. Now he only tests my TSH.
I do try to take fish oil but I learned from my mom that you can't take/eat anything with it or it will bind so I take that much later. I don't take anything else at all.
I found that STTM site a few days ago and I've been trying to take it all in.. there IS a wealth of info there, which is great, but like I said, my brain fog is so bad right now so I'm having a hard time taking it all in. Today I am going to try and find other doctors in the area and prepare to call tomorrow and set up meet & greets. I haven't had any luck finding a functional medicine doctor which is really unfortunate but I'm hoping to find someone who will treat my autoimmunity and take the adrenal concern more seriously.0 -
STTM can me overwhelming if you haven't been researching hypo/hashi for a long time. So, I think you need to look for a doctor that treats your symptoms and not just your lab tests. If you still feel crappy, your doctor isn't helping you and he may be close-minded to the variety of medications and dosages that can help you to feel better.0
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I know where you are, I was there last year and for years before that. They thought I had MS for a while and a slew of other neurological issues. I second finding a better doctor, or supplementing with a Naturpath. Also I would ask that they test all your hormone levels. My testosterone was low as well and treating that has made a big difference. My weekly goal is to go completely glutten free for the week to see how I feel so I will let you know. Keep your head up, keep fighting for your health!0
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My wife hasn't been diagnosed with Hashi's (yet) as the new doctor that we are seeing is trying the levothyroxine and testing blood frequiently to see how things progress. Some of the things that she recommended:
Stay away from soy protein at all costs. This can have detrimental hormonal effects in people that already have thyroid issues.
Stay away from gluten at all times.
Lower carbohydrate intake. She is having a very difficult time loosing weight and the doctor suggests going very low carb until weight comes off and thyroid is sorted out.
B12 supplementation. Have doctors check other levels, sometimes extreme tiredness is caused by B12 defficiency, which tends to be more pronounced in people with thyroid issues.0 -
I was you just a couple months ago. I ended up making a special appointment to my endo, and ended up bawling as soon as she asked me how I was doing. I ended up telling my endo that her magic numbers on my lab tests felt nothing like normal to me, and pulled out a list I had made with all the symptoms I was still experiencing. She couldn't deny that the Synthroid alone wasn't helping me - so she lowered my Synthroid dosage a wee bit, and added in pure T3 (Cytomel) to my daily routine. I haven't felt this good in a long time!!! My whole family has noticed a huge change in me - I'm no longer a bitter depressed b!tch, and I have energy to do my day to day tasks that I had totally neglected pre-Cytomel not to mention be able to work out 6 days a week for 2 hours at a time.
Everyone is different. What may work for others may not work for you. If your doctor refuses to listen to your symtoms, find a new doctor. Life is too short to feel like crap every single day.0 -
If you don't like Armor ask about Cytomel. Its a synthetic t3 like mmdrop mentioned.
It sounds like your symptoms are beyond what you can fix with diet or lifestyle changes. You need meds and my doctor tries to get my tsh to 1 even though 2 or 3 is still ok on the charts. More importantly, he watches my free t3 and free t4, which are more closely linked to how my body responds.
If your doc won't look at those numbers or give you some t3, you need a new doctor.0 -
I was on Levothyroxine for 9 months also and felt like I was going absolutely crazy. My energy levels were up and I wasn't sleeping all day like I was before medication, but I started having mood swings, I was lashing out at my family for no reason, I would start crying over little unimportant things, and I was easily irritated.
I switched to Armour (pig thyroid), cut out gluten, and started taking Vitamin D, a B complex with B12, and selenium (which helps convert T4 to T3). My mood instantly improved, I have more energy, and I have slowly begun to lose weight. I am finally starting to feel like myself again after a few years of feeling like crap all the time.
I also switched doctors because my original GP did not listen to me at all. He told my 24-year-old sister (who also has Hashi's) that she can't lose weight because she's getting older and that's just how her body works now. Um...I don't think so! If your doctor is only going off of lab results and not listening to your symptoms, he needs to be fired. Like someone else said, just because he's a licensed doctor with a medical degree doesn't mean he understands how your body works. Everyone is different and we can't all be lumped into the "normal range."
There are definitely lifestyle changes you can make to feel better. However, there is only so much you can do without the right type and dose of medication. I'm glad you're calling around to find a different doctor, but don't let the time involved discourage you. Your health is important, and the worse you feel, the less likely you are to take the actions needed to feel better. At least, that's how I felt at one point.
Good luck to you!0 -
Thank you all for the replies. My doctor did listen to me (mostly) and tested my free T3/T4, cortisol and full iron panel and prescribed me Armour. I told him I wanted a 24/hr saliva test but he said he didn't think they could do that and wanted to do the blood test instead. I'm not thrilled with that but we'll see where it goes. If I don't respond well with increasing the Armour then I'll take it from there. At least my doctor is willing to work with me with is good enough for me right now while I continue to educate myself, regain my strength and look for other doctors.
How long does it take to start feeling a big improvement from the Armour?0 -
Thank you all for the replies. My doctor did listen to me (mostly) and tested my free T3/T4, cortisol and full iron panel and prescribed me Armour. I told him I wanted a 24/hr saliva test but he said he didn't think they could do that and wanted to do the blood test instead. I'm not thrilled with that but we'll see where it goes. If I don't respond well with increasing the Armour then I'll take it from there. At least my doctor is willing to work with me with is good enough for me right now while I continue to educate myself, regain my strength and look for other doctors.
How long does it take to start feeling a big improvement from the Armour?
Woohoo!! Good for you!! And high-5 to your doctor for listening!! Many of them don't. I think there are many in this forum that respond to Armour almost immediately. The idea is to ramp up your dose slowly -- They call 30 mg of Armour a half-grain, 60 mg is called a grain. Adding 30 mg at a time, waiting 1-2 weeks and see how your symptoms are.. then either go up or down or stay there.
I guess there's a chance it will not agree with you, but there are other natural solutions, so it isn't over if Armour is not for you.
Terri0 -
My doctor prescribed me 90mg, but what I did was split the pill in half and took it in the morning for a few days. The first day was a HUGE notable difference, almost kind of scary - like drinking a cup of coffee (which I don't do, LOL). The second day was much better and more "natural" feeling. The third day I felt it less and became extremely tired about 9 hours after taking the 45mg so the next day I tried to take only 22mg in the morning so I could take the remaining quarter of the pill later on in the day. However that didn't work so well (didn't feel anything) so an hour later I took the remainder of the pill (45mg total) and then later on in the day when I became tired I took the other half (1.5 grain total) and I felt alright, no hyper symptoms whatsoever. This will be the 3rd day taking two doses of 45mg per day and the 6th day total. I hope I didn't bring myself up too quickly on it.. I just can't stand to feel hypo, I *need* to function.
I'm going to stay at the split 90mg/day for another week or two and see how it goes. At this point I only feel slightly better than when I was taking 137mcg Levoxyl so I definitely see myself increasing the Armour. I see my doctor again in about 3 weeks and he will run another free T3/T4 test.
ETA - is the ratio of Armour to synthetic T4 about the same? My doctor prescribed 90mg of Armour because it's almost "equivalent" to my dose of 137mcg Levothyroxine.. But is that actually correct? Do people usually end up on less or more of their "equivalent" NDT dose?0
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