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Hi - I have had hashimotos diagnosed since 2007. My friends think its all in my head - what are your thoughts on this?

By Anonymous April 29, 2011 - 8:09pm
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I have spent many thousands of $ on doctors, tests, medication etc - all to no avail. I am doing a last round of tests next week - can something be done or do I just have to live at 50% of my life for whatever is left of it - I've read all I can read on it and think I understand it - but my frineds just think it's in my head. My sister also has a/immune hepatitus

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It would require writing a booklet if I wrote down all that I have experienced with this disease. Although this post may be lengthy, it will not tell all. And I want to say thank you for letting me vent today! I began getting sick in 1995. I went for 10 years undiagnosed with hypothyroidism. Because the doctors were going by old testing standards, I wasn't put on hormone therapy. I had all the symptoms of thyroid disease. It was exhausting going from doctor to doctor. Some thought I was just stressed out being a single mom. One told me that it was my age- at that time I had just turned 30! I even had one doctor pat me on the hand and say that I would be alright!?. Seriously? It was a male doctor. I have not found one male doctor that hasn't just written off my issues as a "woman thing or a single mom thing". One day I had a bad sinus infection and decided to go to a new doctor. Since she was so close to my work, I told her I would continue to see her. That is when she decided to do a complete physcial and found I had thyroid disease. I can remember the day that I woke up feeling like I had slept for the first time in all those years. I was constantly tired before then. My hair was falling out, weight gain, muscle twitches, cold- cold- cold, vertigo, reynauds syndrom, heart palpitations, weird rashes, bleeding gums, etc. When I went back to her I started crying because for years people thought I was a hypochondriac. But I was really sick for all that time. That was in 2005. The wonderful doctor stopped working to raise her daughters. It figures, once I found a doctor who wasn't offended by my proactivity, she's gone. I still experiene those things above, but I have periods when I feel well again. Because I have had many ups and down, I decided this year I to go to an Endocrinologist. I had cytomel added to my synthroid, then had to stop taking it. I was in a hyper mode instead of hypo. The doctor tested me for Hashimotos and low vitamin d. I have been officially diagnosed with both and was promptly put on 50,000iu vitamin d a week. I have good days and bad. My aunt asked me if I was getting b12 shots because she also has Hashi's and gets them. My Endo did not put me on it. I found out that b12 is not easily absorbed by people with hypothyroidism. Mostly because of the constipation issues. A co-worker told me she has muscle twitches and her chiropractor put her on b complex. Her symptoms have improved. Tired of being tired, I decided to try b complex with 1200mcg of b12. I chose a sublingual because I read that it is better absorbed this way. You can find this at a local grocery or Walmart for around $5. After taking it for a week, I forgot a couple of days and really could tell the difference. I still have issues, but my muscle twitches have improved some and instead of feeling foggy, I am more clear headed. I am making it a point to take my B complex/B12. Every day. Keep in mind that it has to be taken 4 hours after thryoid meds. This information came from my pharmacist not my doctor. Also he said that I should not be taking any cold meds at all. I found out that certain foods should not be eaten if you are hypothyroid. Of course it was NOT a doctor who told me this. My aunt's doctor told her that muscle twtiches/spasms come from having Hashimotos and that it was something she would just have to live with. She was fine with that because at least she knew it wasn't something else. My endo (been one for at least 20 years) told me that this was a neurological problem and I need to see a neurologist. I do not have the resources to go from doctor to doctor nor the energy. I told my endo "I know you are not Walmart (a one-stop shop), but it would be nice to go to one doctor who could rule out all these "other" things before quickly saying I need to see a different specialist. He just looked at me funny and said that I need to go through the proper process. I have couple thousand dollars worth of medical bills and still need to go to a Rheumatologist in October because I had a positive ANA test. I read somewhere that people with Hashi's can have a positive ANA- my endo says no. I go through periods when I don't want to know anything because one doc says one thing and another says something completely different. I am not very happy with my Endo but I don't even know where to look for a new endo since the area doctors always refer patients to this guy. And although I am now married, we have no extra money or good health insurance. I would like to find a naturapath who takes insurance and can combine natural and conventially remedies/meds. But the thought of even trying exhausts me. I guess it is the "thyroid" brain at work again! haha.. Thank you again for letting me vent!

July 9, 2011 - 8:56am
(reply to Anonymous)

I understand completely what your going through and believe me YOUR NOT ALONE! I was 20 when I was diagnosed with Hyperthyroid and was pregnant with my second child. I already had been through a lot of health problems. My throat looked like I swallowed a really big dog bone….I grew a HUGE goiter! I tried hiding it from my family because I was scared, I just felt like I couldn’t handle any more. Since I was pregnant they couldn’t do much until I had my daughter. After she was born I went through radio-active iodine treatments to kill the thyroid. and was put on levothyroid. I just kept getting worse and worse. Here I was in my twenties with two children and could not hardly get out of bed. Every doctor visit they would say my thyroid was doing good but they couldn’t explain why I felt so bad still. After several years and MANY doctors I finally found the perfect doctor. She did blood work and discovered that I had Hashimoto’s. She changed my meds to Synthroid, taught me what I could and couldn’t eat, and showed me how to exercise. I am 31 now and my thyroid has been great the last few years. I still have bad days but I have learned how to deal with them and make it through to the next day. Due to my thyroid being messed up for so long it killed my auto-immune and I have several other diseases. Like Primary Billary Cirrhosis, several digestive diseases, arthritis, and more. Well enough about me I just wanted you to know your not alone and if you ever have any question or just want to talk you can email me anytime. [Personal email removed as per guidelines]

October 28, 2011 - 12:42pm

Check out A New Dawn Coalition for Thyroid Awareness group, as we are just starting up and ready to start growing!

May 3, 2011 - 8:03am

Dear friend,
Few years back, due to obstructed jaundice, my thyroid was disfunctional - hyper. I was allergic to medication.
God's blessing, I sourced out Virgin Coconut Oil. It's a miracle oil, since then I'm on it everyday - 1 tablespoon only. Besides this, it takes care of lots of other problems too cos VCO is antiviral, antibacterial, antiprotozoal. It's the World's Best Germfighter!
[personal email removed by Moderator per posting guidelines]

April 30, 2011 - 4:33pm

Dear Anonymous,

Just which tests have you had done for this?

I too have Hashimoto's, and have had it for 23 years. I was on the synthetic hormone replacement for 17 years until I switched to Natural Dessicated Thyroid hormones. For me it made a hugh difference. Also, we no longer judge my therapy by the TSH, as my FREE T4 and FREE T3 tell the doctors more about what is going on with me.

As for you friends thinking it is in your head, I am right there with you! Even with a diagnoses from the medical community, my friends (and sometimes even the doctors!) think I it is in my head, but I know my body and I know when it is not right. I wish I had advice for you on your friends, but I gave up on anyone understanding just how much of your quality of life is robbed from this disease. Unless they have it too, they will likely never understand. Just keep in mind that there are a lot of us out there that know EXACTLY what you are going through, and finding an online support group to share stories of good times and the very bad times with can give you a little bit of sanity back when surrounded by people who just have no idea what it is like to have a "silent" disease that only you feel, but noone else can "see". We have started such a group here, try to find us an join up! We want to have a collective voice so maybe more people can understand just how devastating this can be to your life.

Look for A New Dawn Coalition for Thyroid Awareness in the groups.

Best Wishes,


April 30, 2011 - 8:37am

Hi Anonymous,

Welcome to EmpowHer!

I'm sorry you've been diagnosed with Hashimoto's disease but what makes your friends think it's in your head? I'm sure your doctor didn't just pull a diagnosis out of his hat. It is important for you to finish all types of testing in order for you to get the best treatment possible.

Treatment for Hashimoto's disease may include observation and use of medications. If there's no evidence of hormone deficiency and your thyroid is functioning normally, your doctor may suggest a wait-and-see approach. If you do need medication, chances are you'll need it for the rest of your life.

Synthetic hormones
If Hashimoto's disease causes thyroid hormone deficiency, you may need replacement therapy with thyroid hormone. This usually involves daily use of the synthetic thyroid hormone levothyroxine (Levothroid, Levoxyl, Synthroid). Synthetic levothyroxine is identical to thyroxine, the natural version of this hormone made by your thyroid gland. The oral medication restores adequate hormone levels and reverses all the symptoms of hypothyroidism.

Soon after starting treatment, you'll notice that you're feeling less fatigued. The medication also gradually lowers cholesterol levels elevated by the disease and may reverse any weight gain. Treatment with levothyroxine is usually lifelong, but because the dosage you need may change, your doctor is likely to check your TSH level every six to 12 months.

Monitoring the dosage
To determine the right dosage of levothyroxine initially, your doctor generally checks your level of TSH after a few weeks of treatment. Excessive amounts of the hormone can accelerate bone loss, which may make osteoporosis worse or add to your risk of this disease. Overtreatment with levothyroxine also can cause heart rhythm disorders (arrhythmias).

If you have coronary artery disease or severe hypothyroidism, your doctor may start treatment with a smaller amount of medication and gradually increase the dosage. Progressive hormone replacement allows your heart to adjust to the increase in metabolism.

Levothyroxine causes virtually no side effects when used in the appropriate dose and is relatively inexpensive. If you change brands, let your doctor know to ensure you're still receiving the right dosage. Also, don't skip doses or stop taking the drug because you're feeling better. If you do, signs and symptoms will gradually return.

Effects of other substances
Certain medications, supplements and even some foods may affect your ability to absorb levothyroxine. Talk to your doctor if you eat large amounts of soy products or a high-fiber diet, or if you take any of the following:

Iron supplements, including multivitamins that contain iron
Cholestyramine (Questran), a medication used to lower blood cholesterol levels
Aluminum hydroxide, which is found in some antacids
Sodium polystyrene sulfonate (Kayexalate), used to prevent high blood potassium levels
Sucralfate, an ulcer medication
Calcium supplements

All the best,


April 30, 2011 - 4:23am
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