# Hashi's Attack? Need some Guidance



## numero999 (Mar 30, 2013)

Quick backstory: I was diagnosed at the age of 21 with Hashimoto's. I'm 26 now, so about 5 years ago. I'm also a male, my mom had Grave's so that's why we checked early on. I was put on a low-dose of .50mcg generic levothyroxine for a couple of years and did well. I was moved up to .75mcg but it was too much. Around a year or so ago, I lost insurance and didn't take any levothyroxine or get blood tests. I was feeling fine however, maybe slightly hypo but nothing debilitating.

I was able to get on Eltroxin and took 1.0mcg every other day (per the dosage to mimic an everyday dose of .50mcg). I was doing this for three weeks then my neck started swelling up more and more as night progressed. I noticed that my scalp was tingling in the back and my vitiligo was quickly progressing in new spots. I became very anxious, stopped using the Eltroxin, and scheduled an appointment with my PCP.

He checked me during the day when I wasn't as bad. After a few days off of the Eltroxin, I started to feel a little better. The constriction in the throat was still present but not nearly as bad. The doctor got me in quick, test my TSH at 9 and prescribed .88mcg of generic levoxythyrine. I took half a pill the next day and instantly got worse. My lips become numb, my throat constriction was bad, very anxious, and my mouth and eyes burned. So I stopped taking the levoxythyrine altogether in hopes that I feel better. I called the doctor, he advised to stay off and we'll regroup in a couple weeks (4/16).

So it has been about 12 days since my last dose of levoxythyrine. I still have throat constriction that throbs and gets worse as the day gets longer. My scalp burns on some days and I noticed increase in hair loss. My eyes and mouth/lips and burning. The vitiligo seems to be slowly spreading despite treatments.

Since that time, I decided to go gluten-free since there's some evidence to support it helping autoimmune disorders. I figured I would try it at this time.

So here's my questions:

What's going on with my thyroid? I've never had a feeling this bad and I want to know if I'm doing the right thing. My idea is that introducing the Eltroxin caused my antibodies to ramp into overdrive and so my thyroid is swelling. I'm getting the vitiligo from the added stress (hormonal and anxiety) and if my thyroid is attacking itself why shouldn't the melanin go to waste either. My hope is that I go off the meds, wait until its out of my system, and it will stabilize to where I felt before the Eltroxin -- hypo but functional.

Why is this happening as the day progresses? I notice after sleeping a lot, it will be a lot less constricting. However, if I get up at 10am, by 2pm its slightly there and by 6pm, it's distracting. I used a warm compress and sometimes Aleve helped. I would get a dull headache after it let up a bit.

The throbbing in my neck feels more like the lymph nodes under my neck. It could be the thyroid pushing things up? The doctor checked my thyroid and neck by hand and could not feel any nodules or swollen lymph nodes or salivary gland issues. It doesn't feel as low as the thyroid is to me. But I figure it has to be the thyroid given the introduction of Eltroxin and my past history with it. It is on both sides and it also feels like my gag reflex is triggered constantly.

How long until levoxythyrine is totally out of my system? I do remember experiencing mild hair loss and the scalp tingling before with synthroid when I first went on it, but it went away. I'm thinking it's linked to that.

Since I don't have insurance, the pickings are slim on what to do. I see the doctor again on 4/16. I was thinking about trying Armour but I don't want to experience or prolong this neck constriction. He didn't test my Free T3 and T4 levels, so I will ask that next time or order an online test.

Is it possible to have a TSH that high and still feel normal? I mean with regards to the Free T3 and T4 and the thyroid functioning despite the TSH wrong. I swear I felt just fine before all this.

I'm taking a daily multi-vitamin that is pretty rigorous in terms of Zinc/Selenium, 2000 IU of Vit D, lots of B/Folic acid too. Thinking about adding an Iron supplement. I went off those a couple weeks ago but I'm now back on them.

I'm looking for any feedback. I've been freaking out and cannot function like this.


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## sjmjuly (Mar 23, 2012)

It is really a crap shoot. We are all so different and what works for one, doesn't work for another. You really need to keep trying and find a really good doctor. I was diagnosed last year during a very awful hyper stage of hashi's. Was put on Naturethroid and slowly worked up to 1 1/4 grains (about 81 mcgs) Did great for a about 8 months and then went completely hyper again. Had to stop taking it for three days and then start over at 1/4 grain. Our antibodies have a mind of their own and attack at will. I wish they would just yank mine out and be done with it. My bad attacks usually happen in the middle of the night and wake me up, though I have had a few in the middle of the day. 
I would stay gluten free (I have been for a year) don't drink ANY soda (diet is the worse) limit your caffeine intake and keep taking your vitamins and selenium. That seems to help me too. I know you don't have insurance, but it's sooooo important to have a GOOD doctor treat what you have. Being hypothyroid is bad enough and then you throw the autoimmune component in there and now there are TWO battles. 
What a pain in the behind.


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## Andros (Aug 26, 2009)

numero999 said:


> Quick backstory: I was diagnosed at the age of 21 with Hashimoto's. I'm 26 now, so about 5 years ago. I'm also a male, my mom had Grave's so that's why we checked early on. I was put on a low-dose of .50mcg generic levothyroxine for a couple of years and did well. I was moved up to .75mcg but it was too much. Around a year or so ago, I lost insurance and didn't take any levothyroxine or get blood tests. I was feeling fine however, maybe slightly hypo but nothing debilitating.
> 
> I was able to get on Eltroxin and took 1.0mcg every other day (per the dosage to mimic an everyday dose of .50mcg). I was doing this for three weeks then my neck started swelling up more and more as night progressed. I noticed that my scalp was tingling in the back and my vitiligo was quickly progressing in new spots. I became very anxious, stopped using the Eltroxin, and scheduled an appointment with my PCP.
> 
> ...


Actually, the tests listed below should have been done before you were placed on any thyroxine replacement and if possible, I advise you to get them.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

Negative test results means that the autoantibodies are not present in the blood at the time of testing and may indicate that symptoms are due to a cause other than autoimmune. However, a certain percentage of people who have autoimmune thyroid disease do not have autoantibodies. If it is suspected that the autoantibodies may develop over time, as may happen with some autoimmune disorders, then repeat testing may be done at a later date.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Plus and ultra-sound. Because cancer needs to be ruled out and the reaction that you are having to the thyroxine does happen to "some" people who have thyroid cancer. I have seen this time and again. I sure hope not but it is better to be safe than sorry!

I am so sorry you feel so ill; You are so young and need to be enjoying your life!


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## numero999 (Mar 30, 2013)

Thanks for the responses. I'm trying to see an Endocrinologist because I don't have much faith in this doctor. However, the guy is booked up. Another option would be to see someone in the hospital where I could get financial aid. That seems especially true for getting an ultrasound too.

Also, Andros: is TSI that helpful for Hashimoto's? I read around that it seems like a good test for Graves but not really that helpful for Hashi's. I am just trying to examine which tests I can afford or try to get. I think the Free T3, T4, and Anti-TPO ones are highest priority now.

If, on the off-chance, anyone is from the Bay Area, CA and has any good recommendations, I'd love to hear them.


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## Katee1 (Mar 30, 2013)

I am in the Bay Area and have a lot of information on drs here. Send me a private message if you want.

I'm new to the board, but I imagine mentioning/endorsing hospitals and drs here is a no-no, but I can't imagine they mind two people in the same area exchanging information off-board and in PM.


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## Katee1 (Mar 30, 2013)

Numero... also, forgot to mention... I have sons your age who live here (in another part of the Bay Area along with my son's girlfriend). Ages 24-25. Are you new to the bay area?


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## numero999 (Mar 30, 2013)

Awesome, I sent you a PM.


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## Octavia (Aug 1, 2011)

Katee1 said:


> I am in the Bay Area and have a lot of information on drs here. Send me a private message if you want.
> 
> I'm new to the board, but I imagine mentioning/endorsing hospitals and drs here is a no-no, but I can't imagine they mind two people in the same area exchanging information off-board and in PM.


Yes...perfect!


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## joplin1975 (Jul 21, 2011)

I had Hashi's and my TSI was at 129%. I had a horrible time tolerating synthroid...the test was helpful in understanding why.


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## numero999 (Mar 30, 2013)

Thanks for the info.

Today I am feeling considerably better. The first night in a while where it felt okay. We'll see if it gets any better.


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## Andros (Aug 26, 2009)

numero999 said:


> Thanks for the responses. I'm trying to see an Endocrinologist because I don't have much faith in this doctor. However, the guy is booked up. Another option would be to see someone in the hospital where I could get financial aid. That seems especially true for getting an ultrasound too.
> 
> Also, Andros: is TSI that helpful for Hashimoto's? I read around that it seems like a good test for Graves but not really that helpful for Hashi's. I am just trying to examine which tests I can afford or try to get. I think the Free T3, T4, and Anti-TPO ones are highest priority now.
> 
> If, on the off-chance, anyone is from the Bay Area, CA and has any good recommendations, I'd love to hear them.


Hashi's patients often swing back and forth between hypo and hyper so...........................

Hashi's and Graves' closely related
http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/


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## numero999 (Mar 30, 2013)

Thanks so much. I can't recall when I've felt hyper outside of upping Synthroid doses.

Anyway, I'm feeling a lot better today. For the first time in a while I'm a bit functional, so hopefully things are settling down. I wonder how I can broach getting a sonogram to check for cancer to my doctor while not on insurance.


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## numero999 (Mar 30, 2013)

A bit of an update in case anyone cared:

I feel about 90% better. I'm still gluten-free, no sugars, very clean diet with good supplementation. I am still off the levoxythyrine, but my energy levels are leveled out. I'm starting to feel like my old self again. Very much relieved, the past 2-3 weeks were an absolute nightmare.


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## Andros (Aug 26, 2009)

Katee1 said:


> I am in the Bay Area and have a lot of information on drs here. Send me a private message if you want.
> 
> I'm new to the board, but I imagine mentioning/endorsing hospitals and drs here is a no-no, but I can't imagine they mind two people in the same area exchanging information off-board and in PM.


PM is good!!! We encourage that actually!


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