Hashimoto

[DarleneB]

DR. IZABELLA WENTZ  just published  a new book a best seller already... called Hashimoto's Protocol. ..I haven't got my copy yet.  She is  pharmacist who had full blown Hashimoto's. .but through research and being her own Guinea pig. .she has been in remission  for I think 3 years now.
She also has any book called The Root Cause...I am waiting for this .also....she says there is a root cause to our autoimmune diseases.

[irish]

This should be interesting. I will have to watch for it. Hashimotos is a different disease in that it can be so hard to sort out its symptoms from Sjogrens and some other autoimmune diseases. Sometimes people can have positive TPO and not have symptoms. The only way to know if you are in remission would be to keep track of symptoms and get TPO and TSH done on a very regular basis. This is what I know about it. I have Hashimotos for many years and my son has a very bad case of Hashimotos and was very ill. Thanks for the information. Irish

[Way2dry]

Thank you for letting us know about this book.  I'm afraid I have Hashimoto's as everything I've read points to that as being the cause of an underactive thyroid. My TSH is 4.30.  More tests this week.  I'm pretty depressed about this. 

Irish - what is TPO?

[Scottietottie]

Hi 

I have Hashimotos and the good news is that when the medication hits the 'sweet spot' - one can feel ever so much better. getting to the 'sweet spot' and maintaining it can present a challenge but it strikes me as being more treatable than Sjogren's.

Before I got the medication right I was incredibly depressed and had really awful brain-fog. Now it's not so bad. The brain - fog left - I attribute to Sjogren's. It's a lot better than it used to be though.

Take care - Scottie.  (I need to keep my TSH between 0.3 and 2 to feel right.)

[irish]

TPO is thyroperoxidase antibodies which is the test for Hashimotos. A lot of times the doctors don't do this test but it needs to be done occasionally to see if a person has converted from negative to positive. Most people convert sooner or later to the positive. Irish

I said this wrong.... should not be negative to positive for the TPO blood work. The normal range is something like 0-35 if I remember correctly and anything above means that there are some extra antibodies against the thyroid that are hanging around.

Basically the treatment for the Hashimotos is the levothyroxine and some times the medication is given at a lower dose even when there is not a diagnosis of hypothyroid. If a person has really high numbers then the big gun meds are used. My son had a 26,000 TPO which is extremely high and was really affecting him. He was put ono Methotrexate 25 mgm once a week. Right now the doctor is trying to decide if infusions of Rituximab would work for this.

The Hashimotos has not been researched a whole lot, ....especially when people have these super high TPO's occurring with Hashimotos encephalophy. For those of us with the Hashimotos the TPO should be done occasionally and when found to be positive then it should be monitored on a regular basis. Maybe once a year....everyone would have to discuss this with their doctor. The reason that TPO should be followed is because of the fact that these numbers tend to vary plus they show up better than some of the other blood work antibodies do.

When we have multiple autoimmune diseases we can blame symptoms on Sjogrens or one of the other diseases we have and frequently find out by accident that the thyroid antibodies are causing the symptoms. Another thing to keep track of. Good luck to all. Irish

[Way2dry]

Thanks for your responses.  This is such a great forum - everyone is so helpful and I am learning a lot!  I had never heard of Sjogren's or Hashimoto's before, so it's nice to have somewhere to go for support & answers.

[A Mom on Spin]

Was surprised to learn this past weekend at the SSF's patient conference that hashimoto's is the number one overlapping disease with Sjogren's - not lupus or RA.  That was news to me!

Liz

[DarleneB]

I got one of my books on The Hashimoto protocol by Dr IZABELLA WENTZ.
The book is really really good...goes into diet changes and what supplements to take....

[irish]

Hashimotos is probably the most common overlap autoimmune disease with RA and with lupus. I had read an article years ago by a researcher who said that it may be proven over the years that Sjogrens is the main autoimmune disease and the rest sort of branch off from it. Who knows what they will find. Actually, there are so many symptoms that are alike in all the autoimmune diseases that it is really hard for doctors to sort things out. It seems that the aches and pains are common to all of them plus pretty much all of the autoimmune diseases have some type of skin issues. It really is interesting learning about all these diseases.

The thing that continues to plague me is the fact that we can go to the doc for years and they do all these tests and come up with nothing. Do they not know that if they can't diagnose something fairly soon they should start thinking autoimmune. Just me sounding off. Good luck. irish

[LadyDi]

All of my autoimmune issues started out with my thyroid gland some 20 years ago. This lousy small town endocrinologist diagnosed me with a multinodular goiter with a dominant nodule. He scared the wits out of me, by telling me that I could have thyroid cancer and ordered me to see a surgeon to have my left thyroid lobe removed. My TSH at the time was so low (below 1) and I was so hyper and anxious that I was bouncing off of walls!

I have not been the same since I had that surgery. I take thyroid replacement medicine and my TSH is kind of high @ around 2.4 now. After all of the bullsh**t and the incorrect diagnosis, he then said to me "well it could have been Hashimotos."

I think that it was Hashimotos and that the thyroid surgery that I had was totally unnecessary. It did a number on me, as where they have to cut is a very high risk area. I believe that Hashimotos is related to all of the other autoimmune issues including Sjogrens.

What a stupid doctor that I had! He damaged me because he didn't know what the heck he was talking about. Sometime I entertain the thought, that if I had never had that thyroid lobectomy, then I never would have ended up sick. I then have to remind myself not to waste my time thinking like that because i'll never know.

[irish]

It is not uncommon to have nodules in your thyroid and they can become cancerous. Probably a good thing in some respects that your doc was so aggressive as back in those days the docs didn't know that much about the thyroid. My son with severe Hashimotos has several nodules and get larger and then shrink and drive him crazy. His TSH jumps around terrible and he is always having to change his medication dosage.

By the way, your TSH is really in a pretty good place. I wish mine would be a little higher. My docs want it to be under 1.0 and I keep telling them it is too low for me. I think that when we have Hashimotos our TSH jumps around anyway but we don't get it checked all the time so we do't know it for sure.

Also, I want to reassure you that mist likely the thyroid surgery could have been a stressor that could have made your Hashimotos worse or even kick started the Hashimotos or any of the other autoimmune diseases that you have.I have had autoimmune issues since age 21 and have had many surgeries plus 3 babies (last pregnancy almost killed me with autoimmune symptoms) and many other illnesses and infections. All I can say is that I really could never tell if I got worse or better after any of these procedures as I always have some symptoms going on and am never symptom free.

The thyroid is a hard problem as it is so darned complicated. The truth is, we all could use a good endocrinologist but they are hard to find so we have to make do with our family doc and keep on the good side of him so that he doesn't give up. We frustrate our doctors cause they so often feel helpless. Good luck to you. Irish

[Way2dry]

I'm so confused. Just got my blood tests back & don't think I have Hashimoto's but I don't know what to think now.

My TSH went from up from 4.30 on 3/8 to 4.32 a month later. T3 & free T4 are in normal ranges. Thyroglobulin Ab and Thyroid peroxidase Ab are also in normal range.   

I know I'll have to talk to my pcp but I was wondering if anyone else has a similar situation and are you being treated with thyroid medication for a high TSH only?

DarleneB - let us know how you do on the protocol. Good luck!