Thyroid Disease suffers

[Chicabee19]

I assume I'd be better off going to an endocrinologist? or should my family dr be able to tell me what's up?

Not necessarily! Many of my contacts have had more trouble with Endos not listening and refusing Armour. Doesn't make sense since an Endo should be more informed.

If your family doctor will do the tests, the results can tell you what's up with your thyroid function if you know what to look for.

Look at the ranges and you'll be able to see where your numbers sit within the range. I always like my numbers to be on the high end, btw.

Feel free to PM me - I can help you figure out all the numbers if you want.

What is Hashimotos Encephalitis?

...."A very rare condition associated with Hashimoto's Thyroiditis is Hashimoto's Encephalopathy, a neuroendocrine disorder. Much like the antibodies in Hashimoto's Thyroiditis attack the thyroid, in Hashimoto's Encephalopathy, antibodies attack neurons in the brain. While Hashimoto's Encephalopathy is quite rare (there may only be several dozen diagnosed patients in the U.S.) it is also likely that there are many more undiagnosed sufferers. Because it is little known and its symptoms are primarily neurological, it is easy to misdiagnosis or overlook and the symptoms frequently lead to mistaken neurological diagnoses.

Some of the most common symptoms of Hashimoto's Encephalopathy include: disorientation, psychosis, tremors, concentration and memory problems, jerks in the muscles and lack of coordination, headaches, partial paralysis on the right side, and speech problems. Sometimes, patients are mistakenly diagnosed as having had a stroke, or having Alzeimer's. Typically, Hashimoto's antibodies levels will be high, and the patient may also have a diagnosable case of Hashimoto's Thyroiditis, but TSH levels may also be normal...."

It was never discovered what caused my severe and sudden illness in 2002, but I now believe I may have had Hashimoto's Encephalopathy or Herpetic Encephalitis. I had massive shingles all over my head at the time. I had grand mal seizures, extreme muscle jerking, memory problems, massive head pain. I stopped breathing twice and had 2 near-death experiences. One of my pupils is permanently larger, and I still have small provoked partial seizures. I avoid them by avoiding flashing lights, certain PC monitors, etc.​

 

[reallemons1]

Thanks. Sounds awful. Glad you got through your illness without too much permanant damage. I had my thyroid antibodies checked 4 or 5 years ago. The numbers were pretty high. The doctor said I was very allergic to myself. What can be done to lower the antibody count, if anything?

 

[Chicabee19]

What can be done to lower the antibody count, if anything?

I put this list together -- what I have learned over the years from several great sources:

1) adjust thyroid medications by T3 and T4 levels rather than TSH

2) split your dose 2 times a day and take it sublingually to stabilize T3 blood levels, which can be all over the place with autoimmune thyroid problems (I do best taking mine 3 times a day - 1 grain 5 a.m., 1 grain 10 a.m., 1/2 grain 4 p.m., but it is usually recommended after breakfast and after dinner. I don't sleep well, which is why I take my last does at 4 p.m.)

3) keep T3 and T4 in the upper third of the range unless you have cardiac issues, and then it should be kept in the lower third

4) stay away from iodine supplementation - it can exacerbate antibody attacks

5) use Armour (containing T1-7 & calcitonin) instead of synthetic drugs (containing only T4)

6) avoid gluten - some research has shown an antibody connection to gluten sensitivity

7) Selenium supplementation can be of some help

8) optimize your diet and your vitamin and mineral supplementation, hopefully with a whole-food supplement.

9) study all the amazingly valuable information available at: http://www.stopthethyroidmadness.com/hashimotos/

10) join the NaturalThyroidHormones yahoo group so that you always have the most up-to-date information: http://health.groups.yahoo.com/group/NaturalThyroidHormones/messages

11) If you are Hypothyroid, eat Soy or textured vegetable protein (TVP) no more than 4 oz. once a week - it is highly anti-thyroid.

Eat these foods raw no more than twice a week since they contain goitrogen isoflavones and isothiocyanates: broccoli, cauliflower, brussel sprouts, cabbage, spinach, mustard, rutabagas, kohlrabi, garden cress, bok choy, radishes, turnips, peaches, strawberries, peanuts, pine nuts, millet, rape seed (Canola oil).

Cooking helps to deactivate the goitrogenic compounds, so eat these foods in cooked preparations - 1 cup 2-3 times per week.

note: Fermentation neutralizes thyroid-depressing substances in foods.​

 

[FisherMOM]

I went to the Dr yesterday.. he wrote me a prescription to ease me on to Armour. Said he would start me out at 15mcg/day for a month and change it every month until we got to 60 mcg/day.

Well, at the pharmacy, they said that they could not get Armour. Said they would keep trying. (?) The said that if they could not get it tomorrow, they would call my Dr and see if there was something else he could give me. I said "NO. this is MY choice, there IS NO other option. I requested this kind"

They said that if it is the manufacturing causing them not to get it, no pharmacy will have it? I mean what's up with this? They didn't explain well as to WHY they couldn't get it. They will call me tomorrow... around 5pm (I wont be home) and they will let me know if they can fill the prescription.

My dr also said he did not need to do all of those tests seeing as I am already diagnosed with hypothyroid. He will test my t3s the next time though.

If I cannot get Armour, IS there another choice besides Synthroid and it's generic?

 

[HennysMom]

FisherMom,

that doesnt make any sense - are you in a very very rural area? Armour is very popular and is out there - even WalMart carries it.

As far as if there is another choice, well - not if you want to go with the Armour "natural" way, no, I dont think there is. If you want to go with the synthetic "Armour" - then its Synthroid with Cytomel (T4 & T3) and Cytomel must be taken twice a day due to its short life.

Did your dr perform any tests on you at all? What was your dose of thyroid med before he put you on Armour and why would he "ease" you onto it ?? I dont understand that concept at all - you would go right onto the same dose equivalent that you were on your prior thyroid medication - dose for dose. ??

 

[FisherMOM]

Dr says it is bad for your heart to stick me on the dosage right away? I take 100mcg generic synthroid now. He says that my dosage would be 60 mcg of Armour.

I do not go to our Walmart as they take HOURS AND HOURS to fill a prescription... sometimes days. I did go to Wegmans which is a huge grocery store here in NY. They compete with Walmart.

Sadly, if Wegmans can't come through for me, I think I will try Walmart. I just hate making 2 trips, because I KNOW it won't get filled until many hours later.

I have been diagnosed with hypothyroid for 10 years now.
My blood work came back normal last month... but right AFTER my blood work, things went haywire. Overnight I had Straw like hair, dry insides of my hands and my scalp, very, VERY tired.... I know it was thyroid related. I feel better than I did, but still off.

And no, He did not do new blood work. But wants to near the end of December once I am on Armour... IF I get on it.

 

[HennysMom]

I've never heard of that regarding the dosing...is he an endo? I've had my meds switched up several times and always gone straight up or down to whatever it was w/out problems. I was on 150mcg of Synthroid and just switched to 100mcg of Synthroid and 10 mcg of Cytomel - all in the next day. That equates to my org. dose between the two. I couldnt go on Armour right now because I am so med sensitive and my levels are still all over the place - my endo will let me if I dont feel better on Syn/Cyto combo (was on this combo a few years ago and felt MUCH better than just Synthroid alone) - but..at least he's willing with the Armour if I want to or need to later.

I dont understand the not running tests - unless you just had them done - and it takes up to 8 weeks to register the levels when a med change is done for it to read correctly - a minimum of 6 weeks, but most need 8.

I hope your doctor gets you feeling better soon. I would really question the half-dosing for that amount of time though -if you're already hypo then it will take no time for you to fall faster and the tests he runs still will not tell him anything because you're not on the equivalent dose of Armour to Synthroid.

 

[thewobsers]

what about a compounding pharmacy?
we have several here in Ohio and they make your prescription tailored to your needs, in house.
ours is called Buderers... just wondering... i just found this thread and need to go to the library to read all of the 19 or so pages since my dial up will take forever to read, and 2 toddlers are very impatient for my attention... very interesting thread.

 

[FisherMOM]

I did question him about the dosage and he said it was because of a sensitivity issue that some people may have with it, and that it is best to ease up to the correct dosage. He said something about it can put a strain on your heart if you start out at the correct dosage from the get go.

No, he is not an Endo.. but he did know about Armour as soon as I mentioned it. I felt pretty confident that he knew what he was doing.

I am not totally sure why he wants to do blood work after a month though. maybe to see if my numbers have changed since last time because of my symptoms? that makes no sense either I guess.

 

[FisherMOM]

Quote:
I have never heard of this kind of a pharmacy. Personally, I wouldn't be surprised if it was a New York State issue with this medicine. I say that only because NYS is so greedy.