Mayo Clinic Connect
Has anyone been recommended IVIG treatment for Hashimoto’s thyroiditis? I have found plenty of references for IVIG therapy for Hashimoto’s encephalopathy, but not for thyroiditis alone. Thanks in advance for any comments.
Liked by taterjoy, normaw
I have hashimoto's. In 2016 what has changed my world has been finding a functional medicine doctor or nurse practitioner that wants to heal the root problems causing the inflammation attacking and causing the Hashimoto's. My old doctor and endocrinologist (and there were 5 total) none of them would listen to me they all wanted to just up my dosage of Levo. But after lots of reading (articles and testimonials) I knew I needed to try other things specifically a desiccated thyroid medicine along with my levothyroxine. My body was not converting my T cells properly. My body temperature was always low in the 67 to 74 range. It is normal now. I had SVT, which I had an ablation surgery for and have not had problems since the surgery. I had low blood pressure my blood pressure is normal. All the other symptoms that go along with hypothyroid, for the most part have diminished I'm still working on my internal inflammation I think that will be a lifelong journey. I get my blood work every 4 months my medicine changes often but my functional medicine doctor test all my numbers my TSH, T3 and T4 my free T3 and free T4, and my antibodies. She put me on Naturethroid along with my Levo. There are different desiccated medicines I've tried 3 different ones, Naturethroid works best for me.
My dosage of Levothyroxine has lowered to 25 mg. It was at 150. I also had a micronutrients blood work test done and was low on eight different vitamins I supplement with lots of vitamins and herbs and IV vitamins. I feel better than I have in years. I'm to the point now that I have enough energy to start walking for exercise so it's an ongoing journey. I do take IgG as a pill supplement and it helps with my immune system and our immune system is what we want to build strong for our health and with Hashimoto's. Adressing your digestive gut issues is as important a solution for your Hashimoto's. They go hand-in-hand. I take my probiotics religiously. I hope this helps you on your journey keep reading, keep trying things that make you feel better.
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@kjo1 Kudos to you for seeing a functional medicine doctor! I see one too, also known as an environmental medicine doctor and I have Hashimotos' too. He was the one who told me to have my silver amalgam fillings removed from my mouth. My blood work for antibodies directed against my thyroid was off the charts, so the levels could not be read. After all of my old filings were replaced by a biological dentist, my antibody levels dropped significantly and were low, not gone, but in the lower quarter of the scale. Over a couple years, my thyroid improved and we could lower the dose of thyroid hormone I was taking. I had seen a video online that they referred to as a "smoking tooth" where they rubbed a pencil eraser on an old silver filling on a tooth with some contrast lighting and it showed the mercury gas that escaped from the amalgam filing. I used to get sore throats after I ate when I still had the old fillings in my mouth, and I tested myself by putting food in a blender, so I did no chewing, and there was no sore throat. As soon as I started chewing on the old fillings again, my throat hurt. Since the fillings were replaced, this doesn't happen anymore. I take Naturethroid, and these days, there are shortages of this and Armour Thyroid and many pharmacies have no supplies. My doctor was able to find Naturethroid by calling a pharmacy that is a distributor for them and they mail order my prescription. They called the manufacturer to get the information. He prefers this to synthetic thyroid hormones because it has all the components of the T3 T4, etc. My doctor also does allergy testing and custom extracts for allergy injections which lowers inflammation, and optimizes female hormone levels. I have food allergies too, so I avoid lots of stuff including gluten, and a low sugar intake, basically just healthy eating goes a long way toward reducing inflammation. I exercise and I have energy as long as I keep the allergies and asthma under control.
Liked by John, Volunteer Mentor, judyvv1936
Hi Jennifer, I've had my silver replaced. But the custom extracts for allergy injections I've never heard of. I'd like to know more about that. My doc did a food allergy test for me, I wasn't to bad. Once I started on Naturethroid and my numbers improved I was able to stop talking my asthma medicine and I was able to stop taking allergy pills daily. But I am lactose intolerant. And allergic to blueberries, pecans and mushrooms. I've been working on cutting my sugar intake, that is definitely a stumbling block for me, but I'm getting better, I rarely drink soda anymore, I'm pretty much a water/tea drinker. I recently have started IV vitamins and am noticing more energy, hopefully the inflammation will come down. Do you have cortisol issues? I know cortisol levels fluctuate throughout the day I've taken blood work twice morning and afternoon and I basically have no cortisol, this worries me. Has your doctor tested you on this? Thanks for your interest.
Hello @kjo1, Thank you for sharing your story and what helps you. I would like to add my welcome to Connect along with @jenniferhunter who has also shared some great information – Kudos to you both!
@kjo1 I'm not aware of having issues with cortisol levels. At one time, I was going through horrible work stress and this functional medicine doctor tested that in saliva samples, and he had me take supplements for that to support adrenal function. He also balances female hormones and the allergy testing to optimize health. Stress sure did affect my allergies and made them worse, but they changed after that stress was over, and improved a bit. The allergy testing is what he called the maximum tolerated dose and they test individual things like a specific ragweed species (there are several all producing specific pollen). They had vials of different individual strengths and they inject it under your skin and wait 5 minutes and see if the wheal grows and measure it. If you react to that dose, they lower it on the next test injection. Each extract test vial strength goes up by 10 times, so they find the one that is highest that you don't react to for that specific pollen. A lot of allergy testing is to a standard mix of pollen, and they sometimes use a mix if they work well. My trees extract is a mix. If it's not working, they will need to test individual components. Then they make a vial for you that might have a dozen different extracts in it with your specific dosage for each and they trained me to administer my own allergy shots and I have 10 custom vials. It takes 2 to 3 hours for each test session and you might have 4 appointments to get through everything. I need to retest every 3-4 years or if the allergy shots stop working. He says that treating the allergies lowers inflammation. Getting the right doses on thyroid meds and female hormone replacement (after menopause) also lower inflammation. He optimizes vitamin D. I have lots of foods I have to avoid that I figured out with an elimination diet. He also says antihistamines will stop being effective as your body gets used to them. I also use a hepa filter with activated carbon in my home, and had duct work cleaned. I am very allergic to molds and it flares my asthma and sometimes when the spore count is really high, allergy shots are not enough and I take an antihistamine and stay inside with my filters. he tests the breakdown pathways for estrogen and progesterone and I have a supplement to take to aid that process because if your body doesn't detox that well, that is what can lead to increased risks for some hormone related cancers. It's for cardiovascular health. I take Methyl CpG from Ortho Molecular Labs with supports methylation detox pathways and is a mix of B vitamins. You can also lower inflammation with tumeric and Ortho Molecular has a supplement Traumeric that contains tumeric,quercitin, rutin,bromelian and vitamin C all of which helps lower inflammation. Cutting out sugar and refined carbohydrates also goes a long way to lower blood sugar, and sugar promotes inflammation. If I eat things with sugar, I can see fluid retention in my face the next day, and avoiding it makes me look younger. I'm not perfect, but I try my best. I find that many spices bother me or have gluten which causes breathing and gut problems, so I don't use them. I don't drink soda or use artificial sweeteners. I do use stevia which is natural and does not raise blood sugar. I was able to get off asthma inhalers some years ago by removing everything in my diet that caused breathing issues or phlegm, and we built our house with hardwood floors and no carpeting since I was chemically sensitive. After testing, recently I found out I was allergic to my cats, so I have an extract for that, use a hepa filter, wipe them with my wet hand to reduce dander (they are short hair), vacuum and wash the bed covers often, and I'm breathing just fine with the cats. I also use a lint roller on them to remove hair and dander, and they don't mind. This doctor looks at the biochemistry of what happens in the body and tries to fine tune that. He told me he's the only doctor in northern IL who does allergy testing like this. I makes sense to me and it really works.
Liked by judyvv1936
Hello @michaelpaul, welcome to Connect.
I would like to invite @rwgiroux and @bburleson1 who have received IVIG treatment, although for a different disorder, but may be able to give some insight to the treatment itself.
I would also like to invite @crystalgal, @kyjeanne, @taterjoy, @michellecrcrn, @dogmamat, @sebley12, @jillnc, @taffmorello, to this discussion as they have all been diagnosed with Hashimotos Thyroiditis and may be able to answer your question on whether or not they have been offered IVIG treatment.
@michaelpaul, has your medical provider suggested IVIG treatment to you? If you don’t mind sharing, what are your concerns regarding this treatment?
I was diagnosed with hypothyroid 35 years ago; Lupus 25 years ago, and a multitude of autoimmune disorders since then: Hashimoto’s, Sjogrens, microscopic colitis, peripheral neuropathy, raynaud’s, and other symptoms not designated as a disease yet. Recently I was referred to a neurologist who specializes in autoimmune problems due to some new symptoms. After some tests he concluded that my peripheral immune system was under attack and subscribed a five-day ivig infusion. That concluded 10 days ago and I am still suffering from headaches (not unusual) and dizziness. Yesterday I had my thyroid levels tested and my numbers were greatly changed since my last testing mid-December. My question is: could my levels of T-SHIRT, T-3 , and T-4 be affected by my ivig treatment?
Can anyone recommend a functional medicine doctor in Ontario or Quebec Canada? I was diagnosed with Hashimoto’s disease in 2016 after having gone for years with various conditions being ignored by my doctor. I lived a healthy lifestyle I used to be a part time aerobics instructor but started noticing that instead of feeling energetic after my workouts, I’d feel completely drained. I also noticed that I was gaining weight and it seemed the harder I worked out, the more weight I would gain. I started struggling to get out of bed to go to work because of lack of energy. My family doctor said I should cutback on my calories and follow the Canada good guide. My hair started falling out, I used to have hair below my shoulders it’s now about 2 inches long in spots. I developed psoriasis all over my body and gained 100 pounds in a year. I was having trouble swallowing so my doctor sent me for an MRI and they found nodules in my throat. She sent me to an endocrinologist who looked at my results, squeezed my neck and told me not to worry about them that I should just have an MRI done every year. I started googling my symptoms and it seemed like they indicated Hashimotos. I found an alternative medicine doctor who ran a number of tests, it came back my antibodies were off the charts and he confirmed I have the disease. He put me on levothyroxine and vitamin D. I felt great for about a week or two but after that it was back to my new normal. He kept upping the dosage and checking my blood but my T3, T4 and TSH levels were not where he wanted them to be and after a year he said he didn’t understand why. That got me so mad I stopped taking the medication. I thought why am I pumping myself full of these pills if they’re not doing anything. Here we are 2019, I’m 115 pounds overweight, my face is puffy, because of the weight my knees hurt so much I can’t squat or run. In the summer I retain so much water, I can’t wear my regular shoes. I’ve been wearing wigs to cover up my hair. I started drinking pure apple cider vinegar and that cleared up the psoriasis everywhere except for my scalp – that could be because of the wigs but who knows. I had read about natural dessicated thyroid and had asked my alternative medicine doctor about it but he said he wouldn’t prescribe it because the dosages are not consistent. I’m at my wits end. I look in the mirror and feel like it’s a stranger staring back at me. I want to go for walks without feeling like spikes are being jammed in my knees, ride my bike, just feel healthy again. If anyone can recommend a functional medicine doctor here in Canada would you please let me know. Willing to travel. Thanks
Liked by capausz
@sufferingcdn Here's a link to find an environmental medicine doctor who will probably help. I take Naturethroid which is desicated pig thyroid and it works fine. They have had some issues with supply, but you can call the company that makes it to find their distributors. You described a lot of low thyroid symptoms. I've had them too, and my antibodies were off the charts too until I had all the silver dental amalgam fillings removed from my mouth. Then they tested much lower and results could be read. The mercury leaches out of the fillings causing Hashimoto's according to my environmental medicine doctor. Good for you for advocating for yourself. Your doctors didn't help much, and I hope you find better ones. Levothyroxin does work, but the dosing is different. With natural desicatted hormone, you have all the components, and with Levothyroxin, it is used to make the other components.
I was diagnosed hypo in 2008. After 2 md's and 2 endo's telling me that my thyroid was dying and levothyroxine dose would increase over time and that would be the only thing I could expect to help with the many symptoms that I was experiencing, I got busy reading. For me, natural desiccated thyroid hormone (Armour) and an elimination diet (The "Plan" by Lyn Genet) gave me the most relief. You must educate yourself on autoimmune disease in general and reading about the experience of others with hashimotos is also very helpful. I am on a gluten free, low sugar and minimal dairy diet, take B12 and D3/K2 and selenium supplements, among others and exercise as much as I can tolerate. Some resources that I have found helpful: Chris Kresser, Izabella Wentz, Amy Meyer, Sarah Zeilsdorf to name a few and there are soooo many. Read, read, read…..
Hashimotos is miserable but manageable and possibly controllable. If you don't manage it you may find yourself with additional autoimmune disorders. None of them are pleasant…
I wish you good luck and success on your journey. Remember that YOU are the key to taking back your health and you will be ok. Don't give up.
Liked by Jennifer Hunter
Thank you for sending the link! Much appreciated!
Find a functional doc that will prescribe you desiccated thyroid meds. Keep looking until you find one!!! His comment that they are not consistent is a very dated statement and simply not true anymore. You will improve if you add it in addition to your Synthroid or levothyroxine . Also, have that doc do a micro nutrients test and start your supplements, they work. I take IV vitamins, glutathione and ALA therapy every 10 days and have never felt better. As well as my supplements. You may want to take a D3 with K2 the K2 helps your D absorb. The glutathione turns into amino acids and is great detox for your body and liver. My sinuses and breathing have never been better. The ALA is just a series of 4 I'm taking because I'm extremely low on it based on my blood work. But after my first one, I've noticed a difference. Read , read, read, read!! Vitamins, and thyroid and inflammation. Our bodies need this. And we as individuals need to try things and do what makes us feel better. This is a journey, you will feel better, it just takes time.
Hashimoto thyroiditis diagnosed a year ago. No known morbidity.
On eltroxin but TSH is zero with marginally high active hormones.
Antithyroid globulins very high and relentlessly rising.
Patient feels contantly tired.
Any tips on management? Do steroids play any role esp on background of of rising antithyroids?
Hello @msinvula, Welcome to Connect. There is another active discussion where I think your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where you can meet others with your condition and learn what helps them.
> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis and IVIG Treatment?
There is also another discussion with the same name but fewer posts that you may want to read through here:
> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis
I did find the following article that may provide some of the information you asked.
How Hashimoto's Thyroiditis Stopped Ruling My Life
Can I ask if you have found anything that helps with your symptoms?
Liked by Becky, Volunteer Mentor
Hi @msinvula I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your discussion to this existing discussion on Hashimoto's thyroiditis so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.
I'd like to tag fellow Connect members @jenniferhunter @kjo1 and @sufferingcdn as they have experience with Hashimoto's and may be able to offer you support.
Back to you @msinvula is there anything that you have found to be helpful when you are tired?
Liked by John, Volunteer Mentor, Becky, Volunteer Mentor
@msinvula Hello, I have Hashimotos' and I am treated by a functional medicine doctor and take natural desiccated pig thyroid. Some patients cannot convert the components in thyroid medicine. If I remember right, that is converting T4 to T3 (or that's backwards), but what I can tell you is the synthetic hormones do NOT have all the components and some patients don't feel well on them no matter what the dose is. It would be worth asking your doctor about trying natural hormones. There is a lot of information in my earlier posts in this discussion about how my antibody levels were off the charts while I had old silver amalgam dental fillings, and after those were removed, the levels were very low. You might want to look for something similar that might be toxic to your body that could contribute to thyroid dysfunction. If your doctor doesn't see the value in this, you may want to look for a functional medicine doc. See this link for a provider search. https://www.aaemonline.org/find.php I don't know if steroids are an issue, but my doctor advises against them on a long term bases because of adverse side effects. TSH is thyroid stimulating hormone, and if the body senses the thyroid is producing hormones (or from your meds), that level would drop. Only a specialist could answer what is appropriate because it's tricky and there are numerous components that have to be correct for it all to work in harmony. You thyroid can improve if your health improves and you lower inflammation in your body and get rid of toxicities. I have had my dose cut in half and felt fine for a long time on it. Lately, I have needed more hormones and I have a potential issue with an old root canal in a tooth that may be causing problems and affecting my thyroid again. According to my wholeistic dentist, root canals have cadmium in them to try to kill the infection which is a heavy metal. Silver metal fillings have tin, silver and mercury and with an old filling, the mercury gas leaches out causing toxicity affecting the thyroid that is in close proximity to the throat.
@michaelpaul, @kjo1, @tinkerbell, @sherrirnovicki1, @normaw, @darlia and @taterjoy — I thought you might be interested in an August 2019 article that I recently saw on treating Hashimoto’s thyroiditis with surgery.
Is there a role for surgery in treating Hashimoto’s thyroiditis?
Have you found anything that helps with your symptoms from Hashimoto's thyroiditis?
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