Hashimoto's Thyroiditis

Posted by rainglogirl @rainglogirl, Jul 29, 2011

Since Fall 2010, I have been diagnosed with Hashimoto’s Thyroiditis. So far I’ve been to several doctors. My original treatment plan was Levothyroxine and Levothyronine (thyroid hormone) along with other hormones and supplements. I was put on 10K of Vitamin D3, DHEA, testesterone, estrodial, etc. I am no longer on that much of a regime. Our family had aleady been to a nutritionist before the diagnosis and were well on our way to improving our general health & diet. I’ve read the book, “Thyroid Power” by Shames & Shames, which is a great resource (also a book called, “The Thyroid Diet”, which has some good information). When I learned of the classic thyroid symptoms, I realized I have experienced many of them all my life. In the late 80’s, I had a hysterectomy for “fibroids” & excessive bleeding/clotting/enemia. I wonder now if that condition was really undetected thyroid issues? I am 61, I have studied and practiced good nutrition (as it has evolved over the years) most of my adult life. I have had weight issues since my first child was born in 1968. I had a kidney infection with that pregnancy, and in about the 7th month had kidney XRay and had an allergic reaction to the contact dye I was given to drink beforehand. I never gave it much more thought.

I tried using iodine about a year ago, on the advice of a healing practioner, and had a funny, allergic reaction to it (1 drop in water!) and so discontinued . . . . (my face heated up, chest got all red and I felt sweaty and stressed) so I do have some kind of sensitivity to iodine. She suggested later that I might have been needing more iodine, not allergic to it but I have not explored it any further at this point!

Sometime in May 2011, I think, I switched from the synthetic Levothyroxine to Armour (natural harmone derived from pig thyroid). In June 2011, I had two incidents – first, I had a bad fall off of a porch step onto concrete (shocking) and about a week later, my first recognizable “Thyroid Storm” and experienced scary heart palpatations and ended up in the ER overnight for observation. My pulse went up to 126. . . normally for me it’s around 94-100 (still high but not nearly as scary!). When I was first diagnosed with Hashomoto’s Thyroiditis, my labwork showed that my antibodies were 59 (high). During the Thyroid Storm the bloodwork showed they were at 186. This shows that one’s autimmune system is attacking the thyroid. The naturopath prescribed a Thyroid Tincture (combo of healing herbe) which I feel did a good job of reducing the pulse and quieting the antibody activity (though I don’t at this point understand exactly how that works with the tincture?). I was grateful to have that to take 3x/day during the worst of the “storm”.

I still am very new to this disorder and some of it is confusing to me. Would sure help to hear from others who are going thru similar issues with thyroid, especially those who have more experience with it than I and some suggestions or resources, and have things to share about the mainstream medical or alternative medical points of view. I feel I have some important decisions to make soon and need all the information I can gather.

Hopefully some of this will be helpful to others.

I want to point out the subject of being an overweight person most of my adult life, dealing with symptoms I didn’t always understand (like edema, depression, weight gain, insomnia for instance), and the stress physically, and distress of feeling judged for my appearance when in fact I had a definite disorder. I was never a “yo-yo” dieter, but did try a few programs like Pritikin, Low Carb, but executed the plans with common sense, not overboard. In all honesty, my dietary habits (young working mom) were not always pristine and I’ve downed many a pizza/ice cream dinner in my lifetime . . . and let’s not even go to chocolate!! 🙂 The truth is in recent years I have done a much better job with it all, but nothing seemed to really help.

“Thyroid Power” talks about how underlying thyroid conditions can influence other physical challenges, and go unnoticed by the medical profession for what it is. One good thing the cardiologist said to me was that the thyroid condition (in my case) is genetic and that my heart is an innocent bystander to what the thyroid is doing. He helped me see that I can’t just sit back and pretend this doesn’t exist. I would like to live out my life as healthily and happily as I possibly can.

Yesterday I went to a cardiologist for the first time, just as a followup to my recent hospital stay. He is increasing my Metropolol (blood pressure med) for now, to protect my heart, and recommends I see an endrocrinolgist. Talked to me about thyroid ablation (whew, scary!). I read on this site where beta blockers actually masque the symptoms of thyroid, so I don’t know what that means to my body/heart overall. If increasing the meds gives my heart a break while I find other answers, then that is a good thing. To just increase the meds and do no more research would be to my detriment, espcially if the beta blockers are just masquing the symptoms (logical but of course I’m no doctor so don’t really know for sure). One last bit of info, I’ve been maintaining a fasting glucose of about 99-105 in recent months, without medication. While not the best numbers, I’m fully aware that I’m heading for more medical problems without the proper guidance.

Good health to all!

A diet doctor I saw taught me this formula:

Carbs – fiber divided by 5 (because there are 5 carbs in every tsp of sugar)
This gives you the amount of sugar in anything you eat and a good guideline for planning one’s daily menu. I think, by the way, that there are 10-12 tsps of sugar in ever serving of soda. My son with Downs has lost 45 lbs. this year and one of the main things he cut was steady drinking of soda. I’m just sayin’ this is worth your conscious consideration.

Some additional information. I’ve had one knee replacement, Osteoarthritis symptoms, and weigh 296 as of my last step onto the scale. I am not proud of my weight, but it also shows how out of balance my body must be, especially when I’ve been following a sensible, low carb, organic, healthy diet. I’m working on improving sleep, and also exercise. I am usually fairly consistent with exercise (Curves and walking) but have been going slower since the Thyroid Storm. 20-30 minutes of walking seems really helpful and I’m starting back to Curves with a bit less exuberance until I know more about what is happeneing to me.

Well, that’s part of my story anyway. My adult son also has thyroid issues. He was born with Down Syndrome. My neice was just diagnosed with Hashimoto’s as well and I have a few other relatives I need to convince to go get testes. If you made if this far, thanks for staying with me while I told my basic story and please share your experience.


Hello – I have overactive thyroid and in the beginning was subject to a 2-month thyroid storm before doctors thought to check my thyroid level. (That’s how it was discovered).
I am puzzled about your docs prescribing Levothyroxine and Levothyronine as I thought they were to treat low thyroid levels. (I might be wrong on this.)
I was prescribed propylthiouracil (abbrev. PTU), and it controlled my levels since the beginning. I also would think that iodine would be bad for overactive thyroid.
I will try to re-read your entry in a day or two when I have more time. It was very interesting, and your situation seems pretty complex to me. I might learn something or maybe think of something that would be helpful for you. My mother had overactive thyroid when she was young, had her thyroid zapped with radiation, I believe. So she is on medication for life (she’s 91 now).
Best wishes to you ….. Courtney

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I have Hashimoto’s that wasn’t diagnosed until about 5 yrs. ago even though my thyroid has been enlarged all my life. I have type 2 diabetes without neuropathy or retinopathy and I’ve been on medicine for the diabetes that doesn’t work for me. I’ve also been on Thyroxine, SSKI drops and synthroid, which only made matters worse. Even though it’s been a long time, my TSH, T3 and T4 are all good. My antibody count is over 3,000. I rarely ever get sick and I’m allergic to flu shots, tetnus shots, penicillin and a lot of other medicines. My doctor has arranged for me to have a consult at Stanford University next month. Sometimes I just don’t know what to do with this stuff. It can run me on an unbelievable emotional roller coaster and my diabetes, though never good, never puts me in a coma or makes hypoglycemia a problem. I’m 74 yrs. young.

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I have had thyroid problems for over 20 years but this year i had biopsy and no cancer but the doctor said it is hashimoto disease. I have several other medical conditions ,,, most likely all related to Hashimoto, except i have a PFO.. hole in my heart causing a . stroke 2006 massive migraines. I am a Army Veteran so its a blessing for all my medical is covered by the VA. The doctor said it is hereditary, so far one sister has it on my mother ‘s side, we have different fathers and so far just started spreading the word on my dad’s side, I have a huge family an not very close so its a slow process, I am working on the family tree and adding notes to all medical conditions along the way to each person. The doctor also said its rare for me to have it for so long… they usually see it in older persons 60 plus years… Still not sure how i got it. or if it is related to my father being Vietnam and agent orange or other syndromes unnamed by the VA. if it is only on my mother side… more complicated since my mother was adopted, there is some contact with the biological family but not often and majority of the aunts and uncles are dead.

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I’m 28 and was diagnosed with Hashinoto’s a little over two years ago. I also have auto-immune induced type 1 diabetes. I am apparently a bit of an autoimmune disorder magnet. Since I was diagnosed I’ve been on synthroid with slow but steady increases to the dosage. I was just moved up to 150mcg and am really hoping for some symptom relief. I was recently (finally) able to loose a tiny bit of the weight that the low thyroid has caused me to put on. It is quite frustrating when you know you’re doing everything right as far as diet and exercise go and still putting on weight. It is hard to stay diligent and be on top of everything at all times, but it really is the only way that one can take control of his/her disease.

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@courtney1946

Hello – I have overactive thyroid and in the beginning was subject to a 2-month thyroid storm before doctors thought to check my thyroid level. (That’s how it was discovered).
I am puzzled about your docs prescribing Levothyroxine and Levothyronine as I thought they were to treat low thyroid levels. (I might be wrong on this.)
I was prescribed propylthiouracil (abbrev. PTU), and it controlled my levels since the beginning. I also would think that iodine would be bad for overactive thyroid.
I will try to re-read your entry in a day or two when I have more time. It was very interesting, and your situation seems pretty complex to me. I might learn something or maybe think of something that would be helpful for you. My mother had overactive thyroid when she was young, had her thyroid zapped with radiation, I believe. So she is on medication for life (she’s 91 now).
Best wishes to you ….. Courtney

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My mom had this and they removed her thyroid and 3 of her parathyroids too. She has to take thyroids for the rest of her life. Now I’m going through the same thing only I had to get a pacemaker at age 33.

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Diag with hyperthyroid and reaction to 1st med, placed on propylthiouracil and dosage continued to increase to 8 pills a day @ 50mg. Side effects on the level of the rare severe condition called: Agranulocytosis but Endo very rude and said blood work was all over the place and whatever is going on is above her pay grade. Meanwhile, stomach extended, sore neck,glands,breast, swollen everywhere,aching,bleeding gums etc. Unable to see a new Endo until July due to no openings. Can I taper down on the meds a little at a time. I have 3 kids and having to work with increased symptoms and no where to turn for answers. Please provide direction as this condition us life threatening and headaches and stiff neck getting worse along with other side effects. Her only answer weeks ago was removal if the thyroid without checking for adrenal issues and blood work from 2 weeks ago that I am still trying to obtain from Quest is no where to be found but the Endo had them.. HELP. 36 years old. Thank you. Oh yeah, serious heart palpations, heart racing continully on the meds and before the meds.

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The information about PTU is about my daughter and I am trying to get advice on what she can do. I have thyroid, adrenal ,Fibro and lots of conditions and issues as a result of years of being mis-diagnosed and dismissed by doctors in variety of specialists. Severe depression and PTSD etc. as results of cortisol very high in am, DHEA levels extremely low for 10 plus years, serontonin, full menapause at 36 years old. Doctors just said I was stressed and the typical medication rabbit hole. Conditions and other blood levels off as a result and nobody can address or read labs right and pushed off to another doctor and about 20 doctors over last 10 yrs. No help anywhere.
I am trying to help my daughter before her conditions continue and she ends up with a yucky quality of life. please

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I get posts from a Dr. Lam who believes that adrenal fatigue is real unlike most doctors. They don’t check cortisol neither. These posts are from EndocrineWeb also. Dr. Lam is separate.

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I have Hoshimotos Thyroiditis and constantly have to have my levels checked almost every six or up to 12 weeks. I have just last month gone and trying to recover from hyperactive toxicosis. Prior to that my TSH was 6.99 since Oct of last year. This time my T3 and T4 were off possibly because of Zoloft, but recently changed to Lexapro. I have the Thyroid Diet book and The Thyroid Source book.
I know prednisone causes problems for my hoshimotos. If I have an MRI with IVP iodine I have to premedicate with prednisone since I’m allergic to the IVP iodine. It’s a constant rollercoaster. If you feel your levels aren’t right push the issue. None of this just have it checked just every six months like they prefer.

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I really need some help about my thyroid. I am a 76 yr old woman with a lump that is very hard and is just above my collar bone- at the junction of my sternum. It measures 2.5 – 2.0. My PC ordered an x-ray which showed nothing! She thought it was arthritis in the joint as I have arthritis everywhere. She was upset with the results as there is definitely something. So she ordered a CT scan and then went on maturnity leave! The CT showed "right thyroid lobe fullness beneath my lump". An ultrasound was recommended. Plus it showed a borderline enlarged right level 2A lymph node. Her office called me and said to have an ultrasound of my thyroid as they said I have low thyroid.
My endroconologist ordered bloods and my TSH has gone from a 1 to a 2.2. I thought it should be lower.
I have severe pain in my joints and have Sjogrens, fibromyalgia, AFIB, GERD, asthma, mild COPD, severe sleep apnea, severe osteo arthritis, weird blood pressure (it goes up when I stand), pre-diabetes, hiatal hernia, thyroid nodule, intermittent vertigo, vertical double vision at night, severe arthrities of CMC joints of both thumbs (I have refused surgery), costochronditis, meningiona ( I had Gamma radio surgery in 2019),empty sella, ocular rosacia, left hip replacement and need a right hip replacement but my orthopedic says I am not a candidate for surgery. I have had a very low immune system that was diagnosed in 2018 as I had been in the hospital every 3-4 months and had infections in between. It was borderline for infusions and my immunologist said it would get lower as I aged. I had the Moderna shots in Jan and my PC ordered a special antibody test and an IgG, & IgM test to see if I had any immunity to Covid. It showed I had a high amount of antibodies and my IgG and IgM's were normal! I don't know if I should believe it! And now the lump. I am sorry I wrote so much but I really am in a lot of pain and even though I put myself on a 900 calorie diet, I can't seem to lose weight. My orthopedic has told me not to walk and it's painful if I walk . So thyroid? or not? I would appreciate any ideas. I get my ultrasound on June 4. Thanks for reading this and for any ideas.
Joan

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@jmb73 – Welcome to Mayo Clinic Connect!
First thing to focus on is the nodule in your neck. You will have the ultrasound soon. Even if your PC went on maternity leave, she has someone who helps take care of her patients. The office staff knows and you should be able to talk to that doctor. You have an endocrinologist as well.
It is hard to lose weight when your hormones are unstable.
Also, if you continue on a 900 cal diet, the body will think it’s in starvation mode and you won’t lose weight because of that.
You have and have had multiple medical problems- it is overwhelming at times. I just think that you have to find out what the neck lump is as soon as possible.
Please correct me if I interpreted your wrong main concern.

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@astaingegerdm

@jmb73 – Welcome to Mayo Clinic Connect!
First thing to focus on is the nodule in your neck. You will have the ultrasound soon. Even if your PC went on maternity leave, she has someone who helps take care of her patients. The office staff knows and you should be able to talk to that doctor. You have an endocrinologist as well.
It is hard to lose weight when your hormones are unstable.
Also, if you continue on a 900 cal diet, the body will think it’s in starvation mode and you won’t lose weight because of that.
You have and have had multiple medical problems- it is overwhelming at times. I just think that you have to find out what the neck lump is as soon as possible.
Please correct me if I interpreted your wrong main concern.

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The lump is my main concern and it seems to be growing. My PC's office has said it's low thyroid and the nurse said she has it too. But my thyroid blood work came back normal! Thank you for your response. I guess I just have to wait until the ultrasound.
Joan

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