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EndocrineWeb Community Advice

hashimoto or hashitoxicosis?

From: hashihelpme - 2 years 19 weeks ago

Okay so in September I started seeing a new psychiatrist & she had me fill out a 10 page packet of my family history which I didn't know because my mother passed away when I was 8 so I happened to message an aunt of mine that lives in New Hampshire and she asked me if I had ever had my thyroid checked I said yes when I was in high school she said that I needed to get my thyroid antibody levels checked because she has it & her Dr told her that they could almost guarantee that every female in our family has it so I told my new psychiatrist & she told me to tell my family Dr that I want a referral to an endocrinologist because my thyroid antibody levels were 4206 & they are supposed to be 60 or below then I went to my family dr & she said she did not see any point in referring me to an endocrinologist because my tsh levels were normal so I must be fine then I went back to my psychiatrist & she referred me to an endocrinologist & there I was treated as if that is the only reason I wanted treatment was so that I could lose weight which I was not I was already losing weight do to starting meds for narcolepsy then I went back to my psychiatrist & told her that so she referred me to Iowa City which is a university hospital & I yet again got the same reaction from them then I went back to my psychiatrist & told her & she consulted with a colleague of hers who told her that she could treat my symptoms which included mania depression and anxiety with a low dose of levothyroxine & so long as I was still in the "normal" range for my tsh levels I would be fine well then my psychiatrist got fired & a new psychiatrist took my case over & told me that she was not an endocrinologist so she didn't feel comfortable treating my hashimoto thyriodist & said that I need to find someone else to treat me for it she said that I had 3 months to find someone to treat me then I went back for my 2 month check up & she asked if I had found anyone who was willing to treat me but I had been too busy looking into my mother's death that I totally had spaced it she told me that since I hadn't found anyone else to treat me that I obviously didn't need treatment for it then she stopped my levothyroxine meds & I immediately started feeling depressed stressed snappy & I couldn't stop crying & snapping on my 5 year old daughter who didn't deserve that my narcolepsy was worse I was tired & had no energy at all & my clumsiness had came back 10 fold lol I got off of an exercise machine didn't step back as far as I should've smashed in to my ankle then the next day I was walking down a friend's cement stairs and bam I fell off in to the mud & hurt my other ankle so I googled it to see if it is a symptom of hashimoto & it is so I called around trying to find someone who was willing to treat me with low dose naltrexone & I was told that there was an endocrinologist who didn't know about it but was willing to sit down and talk to me about it well i went in today & I took a friend of mine with me because she saw what a difference the medicine made in me so the endocrinologist said she knew what low dose naltrexone is but she doesn't believe in it for treatment of hashimoto because all it is is some guys theory but she did give me my levothyroxine back but I had to get my tsh levels checked again & to go ahead and check my tsh levels in a month after taking the meds & then again in 3 months & so long as nothing changes I won't have to be checked again for another year but my thyroid was swollen today & she said she felt not nodules but granules on it does anyone else go back and forth between hypo & hyper? I asked the endocrinologist today & she said yes but that is called hashitoxicosis she made it seem like she knows that I don't have it so why should she check to see if I have both antibodies present or not on May 4th I started having hyperthyroidism symptoms & my antibodieslevel was 4206 in September last year hasn't been checked since but my tsh levels were 2.5 September last year also & the 7th of May they are only 1.62 & that was after only 25mcg of levothyroxine & being off it for 16 days I need input of what to do?

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Hi,
With narcolepsy, decline in motor control, agitation and psychiatric illness it sounds like Hashimoto Encephalopathy (HE). The condition is only recently becoming well understood, and as a result it is commonly undiagnosed, and mostly only acute cases are reported in the literature as opposed to the less common chronic cases (that would be you). 50% of HE cases are positive for anti NAE antibodies and most have abnormal EEG findings (You should really try to get both of these checked, a neurologist for the narc. and clumsiness is likely to get you diagnosed). The treatment for HE is a piece of cake - corticosteroids short course.
Hashitoxicosis is much more common and therefore the more likely explanation, in this condition you will go back and forth between hyper and hypo, though the hypo state is often not sufficiently hypo to raise most doctors' alarms. Any endo worth their salt will know that TPO is the only reasonable way to diagnose Hashimoto's and yours is HIGH, and that TSH will very often be inside the normal range in the early stages of the disease. With Hashitoxicosis, if you can catch the TSH during a hyper phase it should be around .06 - ie. way below the normal range, but in a month it will probably be normal again, and most doctors will send you to a shrink.
Naltrexone is supposed to help with the aches and pains which are presumed by the advocates of the theory to result from a faulty pain signalling chemistry, most docs will probably send you to a shrink for mentioning that one too, or the paleo diet.
The levothyroxine (T4) is believed to help with Hashitoxicosis by dosing with enough to drop your TSH to about 1.0 (ie. low normal)(if your endo. doesn't know this dump 'em), thereby reducing the demand on the thyroid and apparently subduing the immune attack (a properly functioning thyroid produces hydrogen peroxide which is suspected of playing a role in the immune response). So paradoxically, by providing T4 during the hypo phase, you are preventing the onset of an immune attack which would cause the release of excess T4.
Additionally make sure you are taking adequate selenium 60ug/day, in fact you could take a therapeutic dose of 200ug/day for 9 months, its been shown to cause significant improvement in Hashimoto's, but it must be organic selenium (eg. Yeast bound or Se methionine). Also my partner benefited greatly from vitamin D3 and fish oil supplementation and possible s.boullardi. D3 has been indicated in a few clinical studies.
With regards to getting a diagnosis try to find someone who ahs published a paper Re. hashitoxicosis or HE. Tryhttp://www.ncbi.nlm.nih.gov/pubmed

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A little hard to follow all that but I suggest finding a research hospital that has a specialist you can see rather than just a regular Endo.

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It sounds like you need to do some research or ask around to find a holistic doctor in your area. They are often more willing to step outside the "box" and try new things that traditional doctors stay in to avoid a lawsuit. I have a Psychiatrist who is very cutting edge on thyroid issues, celiac, natural hormones, and nutritional testing, etc. I asked him to prescribe my Naltrexone and even though he normally only uses it for his substance abuse patients he wrote the prescription for me. I got it filled at the same compounding pharmacy that filled my bio-identical hormones that he prescribes. So maybe you either need to find a new psychiatrist or find someone that advertises bio-identical hormones because they will be using a compounding pharmacist. I was able to fill my thyroid hormones- T-3, T-4, estrogen, testosterone, progesterone, and low dose naltrexone- all at the same compounding pharmacy. (South River compounding pharmacy in Richmond Virgina). I had to do a phone consultation with the compounding pharmacist first and then he contacted my doctor for the prescriptions. And then they mailed them to me. Maybe a good suggestion would be to go online and find a good compounding pharmacy that compounds naltrexone and ask them what doctors they use for the prescriptions. Often they have doctors that will do a phone consultation with you and then write the prescription. It needs to be a COMPOUNDING Pharmacy, though, not a regular or chain pharmacy. As for your thyroid meds be sure to find a doctor that will prescribe natural thyroid or T-3 AND T-4. I take CYTOMEL along with LEVOXYL. It makes a HUGE difference in how you feel.

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I know you posted this comment a year or so ago, but I wanted to follow up with a comment for others to know they aren't crazy if they experience these symptoms. About 10 years ago, I would go for days feeling hyperactive but exhausted, with a rested pulse of near 190 beats per minute. After an unspecified time and unpredictable time, I would crash and burn, having no energy and very low bp and pulse. It was a crazy and unending cycle!! Some of my symptoms included cold intolerance, heat intolerance, anxiety, rapid pulse, tingling and weakness. I saw multiple docs in my area, but it was really hard to nail down the very disparate symptoms. I was finally sent to Mayo Clinic by my gynecologist. After about 15 minutes, they told me I had Hashitoxicosis and were going to help me. I cried because the doc said, "Boy, are you sick!" It was relieving to feel that confirmation! They tested my antibodies, which were so off the chart and sent me home with Synthroid (brand only!) and Cytomel. My endo here where I live followed up with them for a year or so until I felt better and they advised him to keep my level at right around 1.0. I don't feel completely the same as before but do feel mostly normal. Now, my daughter has been diagnosed....ugh. I hope this helps someone understand the anxiety of this crazy illness.

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