# Hashi's attack?



## TBRaysgrl3 (May 28, 2013)

So, after being on levothyroxine for almost 3 weeks, I'm now in the midst of a full-blown "episode"/attack like I have around this same time every year. After being tested for everything under the sun and finally getting diagnosed with Hashi's, I thought/hoped that being treated for that meant this wouldn't happen to me anymore. As I type this I am in a great deal of pain in my neck and back from intense muscle spasms. No paid meds work. The fatigue is awful, sleeping 12+ hrs a day and feeling as tired upon waking as I did whenever I finally managed to fall asleep.

Does anybody else have symptoms or Hashi's attacks that occur in this kind of cycle? Seriously, every spring for the past 5 years I break out with really bad folliculitis, then comes the muscle cramps and spasms and paresthesia in arms and legs. It feels like my arms and legs have fallen asleep, like when you're sitting and you know your leg is asleep but you haven't stood up yet to get the pins and needles. Does this sound like a Hashi's attack? i don't think i have any symptoms of going hyper or anything. Does anybody else have this? If so, any tips, especially regarding the pain from muscle spasms would be greatly appreciated! I realize it could be some as yet undiagnosed condition (if so, what?) but I was really hoping the Hashi's would explain everything and the levothyroxine would make it all go away...sorry this post is so long. I can't sleep and am just so frustrated from all this.


----------



## sjmjuly (Mar 23, 2012)

Levothyroxine is NOT the magic pill. Especially if you have hashi's. It only addresses the thyroid hormone replacement and not the autoimmune disorder which is actually what hashi's is. It's not a thyroid disease.
I have it too and it's pure hell. There is so much more that needs to be done to get you feeling better. Thyroid meds is a very small part of it. Research, research, research and make SURE you find a good doctor that understands the disease.
In the two years I have had this I have gone completely gluten free, soda pop free, had all my silver filling removed from my teeth, cut out dairy and take a slew of vitamins. You have to address the autoimmune issue and what triggers the flare ups. One of my biggest triggers was gluten. While it helped to cut it out, I still have issues. It is a ugly long process and not an easy one. You will have bad days and good days and I hope you never have the hyper flare ups. Those are the worst.


----------



## LindyLou (May 2, 2013)

Has anyone in this board used Low Dose Naltrexone to try to lower their AntiTPO numbers? I've been reading about it and am wondering if this is quack medicine or not.

Love 
Linda


----------



## bigfoot (May 13, 2011)

It takes about six weeks for T4-only medications (generic levothyroxine, Synthroid Levoxyl, et al) to be absorbed by the body. You started treatment only three weeks ago and it is going to take some time to get not only the dose right, but relief for your signs & symptoms. On the plus side, many of us have noticed improvements sooner than six weeks. You might want to eventually look into taking a little T3; either by way of adding it in as a separate medication (Cytomel), or via switching to a combined pill (Armour, Nature-Throid, Compounded T4/T3, etc.).

Sjmjuly is right-on, this is an autoimmune attack, not just a thyroid problem. Odd that yours seem to show up on a schedule -- perhaps spring allergies are tripping up your immune system, which is already busy dealing with Hashi's, then causing a worse flare-up? Just a thought. Do you have bad allergies?


----------



## sjmjuly (Mar 23, 2012)

bigfoot said:


> It takes about six weeks for T4-only medications (generic levothyroxine, Synthroid Levoxyl, et al) to be absorbed by the body. You started treatment only three weeks ago and it is going to take some time to get not only the dose right, but relief for your signs & symptoms. On the plus side, many of us have noticed improvements sooner than six weeks. You might want to eventually look into taking a little T3; either by way of adding it in as a separate medication (Cytomel), or via switching to a combined pill (Armour, Nature-Throid, Compounded T4/T3, etc.).
> 
> Sjmjuly is right-on, this is an autoimmune attack, not just a thyroid problem. Odd that yours seem to show up on a schedule -- perhaps spring allergies are tripping up your immune system, which is already busy dealing with Hashi's, then causing a worse flare-up? Just a thought. Do you have bad allergies?


Funny, I always seem to have a hard time with my hashi's in the spring too. I don't why as I don't have allergies, but something with the change of the weather and I have to deal with more issues as well.


----------



## TBRaysgrl3 (May 28, 2013)

Yeah, it is really like clockwork for me when the symptoms start showing up. Of course it took a few years to actually notice that though! I started having "allergy" symptoms ( post-nasal drip, nasal/sinus congestion, sneezing, etc) just in the year or so before I started having all the other crazy symptoms. Funny thing is, I was recently tested for allergies and everything cam back completely negative. Is it possible that the autoimmune aspect of Hashi's is what makes me feel like I do have allergies? Though a runny nose is really the least of my health problems these days...

Thank you all for the support. I really appreciate it. I know that it is still too soon and I'm on too low a dose (50 mcg) to have everything be magically better. I just hoped that doing something would prevent yet another attack. What do you guys do for relief when you have these flare ups? I don't want to sound like a baby, but the pain from thr muscle cramps/spasms is often times quite, um...distracting, to say the least. Any tips?


----------



## sjmjuly (Mar 23, 2012)

TBRaysgrl3 said:


> Yeah, it is really like clockwork for me when the symptoms start showing up. Of course it took a few years to actually notice that though! I started having "allergy" symptoms ( post-nasal drip, nasal/sinus congestion, sneezing, etc) just in the year or so before I started having all the other crazy symptoms. Funny thing is, I was recently tested for allergies and everything cam back completely negative. Is it possible that the autoimmune aspect of Hashi's is what makes me feel like I do have allergies? Though a runny nose is really the least of my health problems these days...
> 
> Thank you all for the support. I really appreciate it. I know that it is still too soon and I'm on too low a dose (50 mcg) to have everything be magically better. I just hoped that doing something would prevent yet another attack. What do you guys do for relief when you have these flare ups? I don't want to sound like a baby, but the pain from thr muscle cramps/spasms is often times quite, um...distracting, to say the least. Any tips?


Mine depend on what I feel during a flare up. Mine used to come in the middle of the night and scare me half to death. Pounding heart, sweating, anxiety, etc. All I could do is kick the covers off, get a cold wash cloth and take an Ativan. They usually pass and I could go back to sleep.
If you are undermedicated, the only thing that will fix that is time and slowly increase your dose until you hit the "sweet spot". Sometimes it can take months. There is no quick fix to this monster. 
Best thing is to find out what your triggers are and then avoid them as best you can.


----------



## bigfoot (May 13, 2011)

Yeah, you might watch for gluten, too. It is a no-no if you happen have either: a) Celiac disease, or, b) gluten sensitivity. They are not one in the same, and you could be negative for Celiac, but still have a bad gluten sensitivity. (Ask me how I know, LOL.) Anyway, simple tests that your doc can run. I discovered that when I went gluten-free, that within 3-4 weeks things really calmed down quite a bit. The doc felt that the gluten was driving quite a bit of inflammation, and thus, worsening the Hashi's. Same goes for dairy for some folks. I discovered that when I stopped gluten, I filled the void with lots of yogurt, cheese, and milk. Not such a good idea...


----------



## LindyLou (May 2, 2013)

Bigfoot, I'm curious as to how you know. I have microscopic colitis (similar in symptoms to celiac but in the large intestines). I came across a forum for this condition and it was the general consensus there that gluten, dairy and soy were exacerbating this condition. I tested negative for celiac yet when I removed gluten from my diet it made a definite difference. This new endo I'm seeing for Hashi's and HPTH told me to eliminate gluten. I had already done that 2 1/2 years ago. I think the next thing will be to remove all dairy. Nt that I consume much but use coffee mate and still eat cheese and frozen custard.


----------



## bigfoot (May 13, 2011)

They can do a saliva test to check for gluten sensitivity, amongst other things. There are some saliva tests you can do that will utilize four different swabs, and return results on everything from a cortisol profile to gluten sensitivity, blood sugar, DHEA, etc. If your doc isn't open to it, a naturopath should be familiar with it (that's who did mine). Only catch is that insurance might not cover it. ZRT Labs and Diagnos-Techs are two labs who offer saliva testing. I'm not sure if there's a blood test at this point to check for gluten sensitivity (instead of Celiac), but there might be.

Glad your endo recommended eliminating gluten. It definitely sounds like it works for you!


----------



## TBRaysgrl3 (May 28, 2013)

So, I went to the doc today because he wanted to see me now that am having this flare up. He just told me to be patient during this whole titration process and prescribed an allegedly non-sedative muscle relaxer for the muscle spasms in my back. He also added to my next order for blood work, testing cortisol, for gluten sensitivity, and a few other things to test for inflammation.

I also got copies of my labs and US from a couple weeks ago that led to the diagnosis. On 6/5 my TSH was 42.82 (0.5-4.5) with free T4 of 0.8. On 6/15 my TSH was 57.13 (same range) and free T4 was the same. Free T3 was 2.1 (2.3-4.2). Quite a jump in TSH in just a week. TPO AB was >1000 (<35). They didn't test for any other antibodies. The US report indicated Thyroiditis and a goiter. It also said it had "hypervascularity". Anybody know what that means? Thankfully, no nodules or anything.


----------



## bigfoot (May 13, 2011)

Holy smokes... a TSH of 42.82 and then 57.13?! Wowzer. No wonder you feel awful.

Do let us know what the new labs show.


----------



## ChrisHasHashis (Jun 17, 2013)

Just coming here to say the hyper phases for me come and go and I hate them. I have Toprol beta blocker but don't often need it. My exterior neck/throat is sore today so I know something is up.

I use an app for android called thyroid tracker and it's free to track my symptoms.


----------



## TBRaysgrl3 (May 28, 2013)

Thanks, Chris. I will look up that app. I just had a blood test yesterday to check my levels after one month on the 50mcg of levothyroxine. I don't know what's going on with me right now, but I definitely don't feel right. My throat has been so swollen since about Friday. It's very painful, causing radiating pain in my neckband shoulders, andI am starting to have trouble swallowing. I have a follow up appt with my doctor next week to go over everything and move to the next dose in the titration process. I will post my lab results as soon as I get them, I know it's only Beenmonth of this process, and since diagnosis for me, but so far it is pretty horrible. Definitely ready for it to be over, especially now that I have a giant inflamed thyroid. Am I right in assuming that that is the antibodies attacking my thyroid as a result of the low dose I am on? It seriously feels like something is trying to rip out my throat and choke me at the same time, not to mention my neck looks triple it's normal size. (Sorry for the rant, but this is a completely new symptom for me and I'm not handling it very well!)


----------



## TBRaysgrl3 (May 28, 2013)

After almost three months on meds, my thyroid seems to be doing well. After 6 weeks at 88 mg, my TSH was 1.26 (.5-5.0) and my FT4 is 1.6 (.8-1.8). This should be great news, however, I still feel like crap. How long does it usually take to get adjusted to the meds and feeling better? My doc seemed surprised that I am not feeling a lot better and especially that my weight hadn't started to go down at all. He now wants to put me on an anti-depressant (I was on Zoloft, then Cymbalta last year and am no longer emotionally depressed, just physically). I still have horrible fatigue, wake up groggy and by 6pm I'm ready for bed. After each but up in my meds, about 4 weeks later I feel like I'm getting a cold or having an allergy attack or something, congested, achy, etc. Does anyone else experience that? I know it's still early days, but I really would like to feel better soon!


----------



## StormFinch (Nov 16, 2012)

Have you had your vitamin D and ferritin checked? I was low on both and the fatigue symptoms sound very familiar. If you haven't had a Free T3 run, you might have that checked as well. It could be that you aren't converting properly.


----------



## Desertrose (Jul 30, 2013)

I have definitely felt that feeling of being achy and "sick"....Sick like my body is "coming down with something" and then nothing, no cold or flu actually follows. It was one of my very first symptoms that I went to the doctors with. 
Funny enough, I was put on thyroxine a bit more than a month ago now and just recently I've had a sore scratchy throat and that same "coming down with something" feeling. 
It's winter here, so maybe my body IS trying to fight something off? I don't know.
I have read that when you start medication it can kick start production of your own thyroid hormone and that you can make three steps forward, three steps back for quite some time until everything levels out.
I'm hanging onto the hope that this is the case.

I've always heard the saying "If it spasms, give it magnesium".
If you take vitamin D it can sometimes deplete magnesium in your body which is why you should take a magnesium supplement along with vitamin D - from what I understand.


----------



## bigfoot (May 13, 2011)

Yes, great news that your TSH dropped like a rock! It can take quite a while for your body to adjust to things. For example, when I first started levothyroxine meds, it probably took me a few months for things to finally start stabilizing a bit. Until that point, it was somewhat of a roller-coaster ride. Hyper symptoms one day, with hypo symptoms another day. Rinse and repeat. (I'm sure the raging Hashi's didn't help, either.) IMHO, both you and your doc are expecting too much, too soon after only a month and a half of treatment.

The fact that you are not emotionally depressed anymore kind of goes against the idea of using an anti-depressant. Many docs seem to want to use them as a catch-all for complaining patients. But ultimately, only you can decide what's right for you, and what you want to try with the support of your doc. If you aren't comfortable starting down a certain road, just say so. You might want to take a read of Dr. Hall's excellent info (also available in .PDF) about anxiety and endocrine disorders, which kind of puts things in perspective: http://www.drrichardhall.com/anxiety.htm

I echo the suggestions of getting your Vitamin D-25, Ferritin, and Free T3 run. Really, the Free T3 and Free T4 are what should be used to monitor things. The TSH is more of a delayed trend-line, with the Free's being what is available *right now* for your body to use. Otherwise, you wind up chasing your tail from lab draw to lab draw. You should also get a Reverse T3 test done to make sure your body isn't shunting your active form of T3 (Free T3) to the inactive form of T3 (Reverse T3). This would potentially result in decent-looking T3 labs, but you still feeling awful and being symptomatic.

IMHO, your doc should also be doing their due diligence, and turning over other stones, such as: checking your 24-hour Cortisol levels (urine or saliva, broken into different collection periods), testosterone and estrogen levels, running those tests for Celiac disease & gluten sensitivity (not the same test), checking ANA, and making sure there's no other hidden disease or illness in the background (Lyme, H. Pylori, rheumatic issues, etc.).

Another thing to consider is what brand and type of thyroid medication you are taking. If you are taking generics, it's advisable to get switched to brand-name drugs ASAP. The generics can have up to a 10% +- fluctuation. So that means this month you might be getting 50 mcg of T4 (levothyroxine), then 45 mcg next month, and 55 mcg the month after that. Also, different fillers and binders in each medication (both brand & generic) can affect people differently, whether you're sensitive or have a full-blown allergy to something. Further down the road, you might want to consider trying to add some T3 medication (Cytomel), or else switching to a desiccated product that has T4 & T3 in a fixed-ratio (Armour, Nature-Throid, West-Throid). I guess my long-winded point is what works for Person A might not be the best for Person B.

hugs3


----------



## Ana78 (Aug 8, 2013)

sjmjuly said:


> Levothyroxine is NOT the magic pill. Especially if you have hashi's. It only addresses the thyroid hormone replacement and not the autoimmune disorder which is actually what hashi's is. It's not a thyroid disease.
> I have it too and it's pure hell. There is so much more that needs to be done to get you feeling better. Thyroid meds is a very small part of it. Research, research, research and make SURE you find a good doctor that understands the disease.
> In the two years I have had this I have gone completely gluten free, soda pop free, had all my silver filling removed from my teeth, cut out dairy and take a slew of vitamins. You have to address the autoimmune issue and what triggers the flare ups. One of my biggest triggers was gluten. While it helped to cut it out, I still have issues. It is a ugly long process and not an easy one. You will have bad days and good days and I hope you never have the hyper flare ups. Those are the worst.


No, no completely disagree. hyper is not worse than hypo.


----------



## Ana78 (Aug 8, 2013)

It seems to me like a hashi attack due to seasonal allergies. I couldn't take levo, was allergic to it and gave me similar symptoms in legs and arms. could hardly breathe, walk, etc. but it happened to me from the beginning and not only in spring. had to change to Armour.


----------



## TBRaysgrl3 (May 28, 2013)

I am quite frustrated because after my last visit to the doctor, he said my numbers looked perfect and basically wrote off how I was feeling now as unrelated to my thyroid or the Hashi's. Now, a couple weeks later, the fatigue is worse than ever, and my neck is sore, feels like I am choking, etc, like it did before I was diagnosed! I know that Hashi's can cause fluctuations in people, but can it do that even when my TSH was down to 1.26 just a few weeks ago? Has anyone else had a goiter start to grow AFTER being successfully medicated?

I have another follow up appt with the doctor in two weeks. Any advice on what I should ask him, tests to run, etc? Is it time to find a specialist? I don't want to overreact because I was only diagnosed and put on medication a few months ago, but I am so tired of feeling tired and just feeling like crap! Any advice on dealing with the ups and downs of this seriously annoying disease? Thanks!


----------



## Ana78 (Aug 8, 2013)

it happens to me with most things I eat. before I didn't know what it was since i wasn't allergic to so many things (after diagnosed with hashi's I became allergic to everything according to allergy tests and my own body telling me, even to things that were negative for allergy gave me a lot of weird symptoms). right now I ate a piece of mango and my neck or throat is swollen. it is difficult to swallow. two loratadines but nothing seems to really work. I too feel sick with my thyroid numbers over 1, especially after I eat something so I'm guessing it has to do with allergies caused by hashi's.


----------



## TBRaysgrl3 (May 28, 2013)

I haven't eaten anything out of the ordinary in the last few days since the neck and throat issues started again. I had an allergy test done at the same time, from the same blood draw as when the doctor originally noticed my high TSH, and it came back negative for everything. I also have been experiencing serious hot flashes and constipation, which are very unusual for me. Both started around the time of the throat issues...plus the fatigue is worse. I called the doctor's office today to let him know of the new/returning symptoms, so I'll wait and see what he says....I just wish there was a way to get relief from some of these symptoms! I am feeling jittery, agitated, and restless, but yawning from the fatigue at the same time, if that makes any sense. Also seem to have less ability to concentrate, spacing out or having my mind wander (opposite of how I am normally), and I am sweating like crazy, and just generally feeling like crap. Anybody else have a similar experience? If so, what did you find helps?


----------



## StormFinch (Nov 16, 2012)

I'd say have your Free T3 run along with your FT4 and TSH, have him check your vitamin D and ferritin if it hasn't been run, and ask for a second ultrasound. If your thyroid is actually growing, comparing the two will tell you. Also, if you haven't added a selenium supplement (200 mcgs per day) you might give it a try. It's said to help reduce antibodies.


----------



## Ana78 (Aug 8, 2013)

I had same symptoms with levo. I thought i was going to die, called rescue twice and they said my vitals were "fine". Switch to armour and never had those probl again, except for when my thyroid numbers are low and need to adjust the dose; then i get cramped muscles and other symptoms but never as bad as when taking levo


----------



## Ana78 (Aug 8, 2013)

About your allergy test, the blood one i think only measures few things. To me the best is the skin test. Scored number 1 (minimum) for shrimp allergy in blood allergy test and number 4 on skin test


----------



## TBRaysgrl3 (May 28, 2013)

Does anyone happen to know the name of a good endo or thyroid specialist anywhere in Florida? Preferably in the Tampa Bay Area? My primary care doctor is great in general, but seems to be a little out of his depth treating the ups and downs of Hashi's. Anybody also know what hospitals or universities specialize I thyroid or autoimmune issues or are doing research in that area? Thanks!


----------

