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Posted 7/5/2012 8:39 AM (GMT 0)
Hi,
I was diagnosed with hashi 4 and a half years ago, initially they put me on 50 mcg /day, and with the time I reached 900mcg/week, I am still not feeling well and have many many symptoms, my latest TSH was 3.40, I tried TSH of 1, but that didn't help either... .

can any one gine me any advice.!

Thanks
Posted 7/6/2012 4:29 PM (GMT 0)
Hi Hypo,
I am sorry that you are feeling so poorly. When you said you tried a TSH of 1, what did
you mean by that? Also, what medication are you on?

I am on Armour and like you, my TSH dropped to below 1 but I still suffered from a lot
of hypothyroid symptoms. So I started reading everything I could about Hashi's. Some of the
most helpful books I found were Hope for Hashimoto's by Alexander Haskell and Why Do I Still
Have Thyroid Symptoms When My Lab Tests Are Normal? by Datis Kharrazian. Both of them
explain that since Hashimoto's is an autoimmune disease, it's important to try to stop
the inflammation and your body attacking itself.

You might try going to both of their websites where there is a lot of information. Dr. Haskell
has a series of videos that explain hashi's and his treatment consisting of three phases:

http://hopeforhashimotos.com/index.html

At Datis Kharrazian's website, http://thyroidbook.com/, go to his blog on the left side
of the page and under his blog go to his archive. He has lots of useful articles about
nutrition, gluten, lab tests, treatment, etc.

The other thing I was wondering from your post is if you might also have another autoimmune
disease that could also be causing your symptoms. It's pretty common to suffer from more
than one autoimmune disease and they can cause a lot of the same symptoms. Are you
seeing a gp, endocrinologist or another type of doctor?

Let me know how you are doing.
Posted 7/7/2012 5:07 PM (GMT 0)
I am on Eltroxin, I had a TSH of one for 4 1/2 months and didn't feel good, so I reduced the dose by 50 mcg /week and it jumped from 0.99 to 3.40, I see an endo .

What I wanted to know is, how much time does it take to feel well, many say that they feel the new dose after 6 week, I don't.
Thanks,
Posted 7/8/2012 12:43 AM (GMT 0)
The amount of time to see a difference after you start taking meds seems to be
different for everyone. I noticed a difference right away, but others have said
that it took weeks. Maybe someone else on the forum will chime in on this. There
was a discussion about it, but I can't find it now.
Posted 7/26/2012 12:55 AM (GMT 0)
I was diagnosed with Hoshimoto's thyroiditis Encephelopathy on June 4th 2011 I have had a hard time with it...As far as meds I'm on prednisone wich I started out with like 120mcg's now I'm down a  year later to 1-5mg tab 3 times a day so getting down there. My Endocrinologist stated they call that stuff Poisonzone. Guess you shouldn't be taking it long periods. I started out with symptoms of slurring speech, falling down mostly right side, tremors RT side only this disease is RT sided for some reason. When I pass out It's only for a couple seconds. Anyway MEDS synthroid 30mg, Vit D 5000, deficiiant they took blood and checked Endo doc.Seroquel 150 I snap them in half or I'm a vombie next day can't drive this and antivert 25 mg's @night, restoril 30mg's at night ( Iwon't take that with seroquel) zombie land. Oh now the good meds (ha,ha,) xanax 1mg, twice a day as needed, Klonopin 1mg 3 times a day as needed these were prescriptions given to me by the psychiatrist I have to see per my doctors recommendation, any way for 3 days NOT TAKING all my meds I'm getting these really really bad headaches, Really I'd like someone to tell me what the difference between HE and MS which is what they said I had first but they sent my labs to Mayo and it was definetly HE predicted by my GREAT doctor only one I think who understands what I'm going thru he is a U of M doc and is great. Any suggestions to bring up to doc let me know Thanks for listening eyes
Posted 7/26/2012 3:21 PM (GMT 0)
@Shelly
First, never just not take your medications. Most likely, that is what is giving you headaches. Plus, why did your doc give you both Xanax and Klonopin? They are in the same classification of drugs (Benzos) and taking both at the same time is pretty rare (as far as I know - I am not a dr - but I have taken both drugs in the past). I personally hate Klonopin. It is an old school drug, and yes it helps with anxiety and panic, but it is highly addictive when taken for extended periods. I just got off of it after being on it for 5 years. When you stop a drug cold turkey like that, it can give you headache, tremors, dizziness, irritability and seizures, just to name a few. You *have* to taper off of Klonopin, and that takes months.

I do wish I could tell you about Hoshimoto's, I have no clue what is wrong with me, and I am not familiar to which thyroid condition is which. For the past several months,I have been researching the different illnesses that doctors have suggested. Among them are (including things that sidetracked that have not been suggested) Hypothyroidism, MS, Lyme Disease, Fibromyalgia, Lupus (several different types), Migraines associated with chronic sinusitis, and RA (to a small extent). I mention these because in my searching, it seems that almost all of these are considered "The Great Imitator" because they mimic symptoms of other conditions. MS, Lupus, and Fibromyalgia all are typically diagnosed when all other possible diagnoses have been eliminated. Lyme behaves a lot like them too, but a blood test will tell you if you have that or not. I could tell you the difference with MS and HE, but as I said earlier, I am only starting to look at thyroid conditions.
Posted 7/26/2012 8:24 PM (GMT 0)
Hi ShellyJo,

It sounds like you have really been suffering. I am so sorry. I had never heard of
Hashimoto's encephalopathy before. After looking at different sources, it sounds like it is
a rare disease and the treatment mentioned was just what your doctors has prescribed.
I know how bad the side effects of prednisone can be because my daughter suffers from
Crohn's disease and also has to take it at times to calm things down.

I've been thinking of you since yesterday, trying to think of something that might help.
And I have come up with a couple of ideas.

First, you might try going gluten-free for a month and see if you notice any difference.
There are several studies (if you would like references to them, I can get them) that show
a strong link between gluten intolerance and Hashimoto's disease. In fact, i was just wondering
if you have been tested for celiac disease.

I agree with SoSt9, you might want to take a look at your anti-depression medications.My
sister was on several drugs (I don't know what all them were, but one was Klonopin) and she
started falling down, couldn't remember huge spaces of time, slurred speech, etc. They were
afraid she had MS or early onset dementia. After an MRI and a battery of tests, the neurologist
thinks the problem was the number and amount of medications prescribed by her psychiatrist.
They are working on decreasing the drugs and she is doing better, but she has a ways to go.
She was in danger of losing her job because they thought she was drunk at work.

One other thought is that you might talk to your doctor about the possibility of trying
LDN, low dose naltrexone. It is being used to treat a number of autoimmune diseases
with pretty good results. There is a lot of discussion about it on the Crohn's disease
forum and you can check out more information at the following link:

http://www.lowdosenaltrexone.org/

One final thought is you could also try Armour thyroid medicine and see if it helps. I know
I feel better on ARmour than I did on Synthroid. Let us know how you are doing.
Posted 8/3/2012 4:19 PM (GMT 0)
Hello,
It's a month since my first post, today is more than 3 and a half months since I am on 900 mcg/week, and I feel no improvement, is it possible to take this long? or I am on the wrong dose? I have a scheduled blood test in few days.
One endo once told me that it takes three months for levo to work... so maybe there is hope.
I am just frustrated and wanted to hear some encouragement !

Thanks,
Posted 8/13/2012 6:52 PM (GMT 0)
Hello,
My last TSH test shows 0.61, so what do you think?

Thanks,
S
Posted 8/14/2012 4:28 PM (GMT 0)
Did you only have the TSH test? Did they run any other thyroid tests? Are you still on the
prednisone? What symptoms are you currently having?
Posted 8/14/2012 7:51 PM (GMT 0)
Hello,
they ran also FT4, and that was 15.5 (10-20).
I never said that I take prednisone, I have blurred vision, fatique, brain fog, excessive sleeping, weight loss, dry skin, sinusitis, obsession, anxiety and much more.

What do you think, shall I reduce the dose? my family doctor wants to reduce my dose.
Thanks,
S
Posted 8/15/2012 3:30 AM (GMT 0)
I'm sorry, I got your post confused with Shellyjo's. I really don't know what is going on, but
my personal opinion is that 900 mcg per week seems like it could be high. Does that mean
you are taking about 125 mcg daily?

I would talk to your family doctor. I wonder if there is something else going on with you.
Has anyone checked your adrenal glands? You said you were diagnosed with
Hashimoto's 4 and a half years ago. Have you had your thyroid antibodies checked lately?
Your symptoms fit with hypothyroidism but not the weight loss. I'm just wondering if
you could be suffering from another autoimmune disease besides Hashi's. They often
have a lot of the same symptoms.

I just think you should be feeling better by now if it was just a thyroid problem. What
does your family doctor think? What other lab tests have they run? I'm wondering if
you could have a problem with your adrenals, pituitary, a hormone imbalance or ?????
If your family doctor doesn't know, I wonder if you could get a second opinion from
another endocrinologist? I wish I could help you, you sound miserable and this has
been going on way too long.

Another possibility is to ask to change to Armour or reduce the Eltroxin and add Cytomel,
which is T3. Maybe that's what you need. Did they check your free T3? It's so puzzling,
I would ask your family doctor, especially if you trust him/her. Let us know what he says.
Posted 8/15/2012 2:18 PM (GMT 0)
Hello,
Adrenals are fine, my FT3 from previous tests was low normal,
as I mentioned previously, with a TSH of 1 I was alittle hypER, so I think that 900 mcg per week is also high, I'll reduce as my family doctor suggested.

Thanks,
S
Posted 8/15/2012 3:14 PM (GMT 0)
I think you might have trouble converting T4 to T3. That might explain the problems you are
having. Google "T4 to T3 conversion" and see if that applies to you. You could also look
at the "stop the thyroid madness" website. Then you could discuss it with your doctor.
Posted 8/16/2012 8:39 AM (GMT 0)
Hello,
Actually I have read the stop the thyroid madness.
I'll consider this and will discuss it with my doctor.

Thanks for your time,
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