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Why you still don't feel good even with treatment.. Hashimotos!

Tell me what you all think of this information?


If you’ve been diagnosed with hypothyroidism you have a 90% chance of your treatment never allowing you to feel normal.

According to the American endocrine society 80 – 90% of people suffering from hypothyroidism is due to an auto-immune disease called Hashimotos.  

In hashimotos our thyroid has become underactive because the immune system is confused and kills its own thyroid cells, over time you have less thyroid hormones because your immune system is continually killing them and that’s when you start to get the symptoms of hypothyroidism and probably about the time you were diagnosed.

There are 2 very important things to understand about hashimotos:

1.Because it is an immune destruction of your thyroid gland slowly over time you will lose more and more thyroid cells and your dosage will have to be increased to compensate for that loss.

2.The immune process itself blocks the thyroid receptor sites. The way hormones work are they circulate in your blood and attach to cells and create a specific change or response within the cell... With hashimotos disease the immune proteins actually will block those thyroid  receptor sites and the replacement can’t help that.. This is exactly why you still feel symptoms with treatment.. The doctors can measure the amount of thyroid hormone that you have circulating in your blood and that’s exactly what they do when they draw your blood and check your labs.. your TSH, FreeT4, FreeT3 etc.. what it tells them is how much thyroid hormone you have circulating in your blood, and make adjustments to your meds based on those levels, what it doesn’t tell them is the actual response that it creates when It binds to the cells, so your labs may look good after treatment because they ARE in fact giving you hormone supplements to circulate thru your blood stream, but you don’t feel good because the response within the cells is defective, not because you don’t have ENOUGH, not because you have TOO MUCH but because the response within the cells are defective and no amount of synthroid can fix that.. You have to slow down the auto immune attack and decrease the immune proteins that are blocking the receptors…
15 Responses
630135 tn?1241047558
Wow! That is great information. I have not been formally diagnosed with Hashi's as of yet. My TSH levels are in the normal ranges at 1.59 but I am waiting on the TPO antibodies test to see if I have any antibodies in my system. So I assume that if I get my results and there are antibodies present (in a high number) that I will be DX'd with Hashi's.

Thanks for the great info!
Hope eveyone has a great weekend!!

Lisa :o)
649848 tn?1534637300
COMMUNITY LEADER
That's why we tell people that Hashi is treated the same as hypothyroidism, but is harder to control.............That's also why it takes longer to feel better because the antibodies are still working on your thyroid and must get it completely destroyed and go into remission.  

In spite of what you've read on here recently -- no amount of synthroid, or other thyroid med is going to control the antibodies -- they have to finish doing what they do best (killing the thyroid) before you will be able to stay on a relatively even keel and even then, you will need adjustments in your med now and then.  

I think we have to get to the point where we can somewhat accept what is happening to us and be able to "go with the flow"/"ride the tide", etc sometimes.  We are going to go up and down, over and around, under and sideways, before we level off.  None of it is "fun" by any means -- we all know this -- the thing is: stressing about it so much seems to make it worse.  

The med will get your thyroid levels back to "normal" and if you are patient, you should start feeling BETTER, even though it may take a long time before you think you feel the best you can feel -- personally, I've felt so cr@ppy for so long, that I doubt I'll ever feel as well as I *think* I should, but when I look at the overall picture, I feel so much better than I did even a few months ago.  I went through my 30's, 40's and most of my 50's with undiagnosed pernicious anemia and (I suspect) thyroid issues, that absolutely ANYTHING has to be better than that -- now I have to take into consideration that I turned 60 this year, so that fact alone tells me that I should be going down hill ---------- I'm not satisfied with that.. because I now feel better than I did 10 yrs ago........

There ARE some things that may control the symptoms of Hashi's, such as possible diet changes, vitamins/minerals, etc.  That's about all we can do: try to control the symptoms...........until the dear, darling "butterfly" in our throat decides to "fly" away.  Just keep in mind that what works for one, might not work for another...........

I'm not saying that this isn't serious, I'm simply saying that we sometimes have to stop and put things in perspective again.  And trust me --- stress will make it worse.  

Avatar universal
I don't think the 90% chance of never feeling "normal" is true at all.  I think 90% can feel "normal" if that is defined as symptom-free.  It's just a difficult process, little understood by both patients and doctors, and too often abandoned before treatment is finished, leaving people hypo.  HOWEVER, I think this is a travesty, and most, if not all, people can get back to "normal" with proper treatment.

Hashi's is the most prevalent cause of hypo in the U.S.

"In hashimotos our thyroid has become underactive because the immune system is confused and kills its own thyroid cells, over time you have less thyroid hormones because your immune system is continually killing them and that’s when you start to get the symptoms of hypothyroidism and probably about the time you were diagnosed."  I agree completely...although diagnosis is often delayed.

I agree with #1.

#2 is a bit more complicated.  It's true that TSH, FT3 and FT4 do not tell you what's going on at a cellular level.  There is a condition called RTH (resistance to thyroid hormone) that inhibits use of T3 and T4 at a cellular level.  It is EXTREMELY rare and genetic. People who have this have to get FT3 and FT4 levels way over the top of the range to relieve symptoms.  I'd be interested in reading your source for this...do you have a link?  I still maintain that you do not feel symptoms if you are treated properly.  The problem is that once patients are "within range", most doctors think they're "done"...go home, eat less, exercise more, you're symptoms are no longer thyroid related.  Wrong!  Unfortunately, there is no way to stop the autoimmune attack until the thyroid function is destroyed.  

Please post the link if you have it.
Avatar universal
I found this information from a website about Dr. Robert Boydston, a Hashimoto's Expert in Fresno, CA.

I"m doing research to understand this diagnosis better.

In my opinion i believe the body has a miraculous healing ability, i refuse to accept a diagnosis that

1. I was never tested for antibodies and was given a cookie cutter treatment and diagnosis.

2. Has a genentic predisposition when nobody in my family has any type of autoimmune disease.

and

3. a disease that doctors dismiss further treatment for as long as you are "in range" on lab reports but don't even care how you actually feel. What kind of doctor does that? aren't they in the profession to HELP people?


It completely astounds me at how dismissive doctors are about this disease.. If there is anything else wrong with you then they are willing to do what is necessary to treat you, to answer questions, to do tests to diagnose you and come up with a treatment plan for successfully treating your disease and your symptoms so why as it pertains to this particular disease do they look at us suffering with this as overweight, hypochondriacs with nothing better to do then complain about symptoms that obviously have nothing to do with our disease because we are afterall "within range" and i by the way am not even overweight..

But I REFUSE to accept this type of treatment.... and i REFUSE to accept to wake up every day and risk the quality of my life based on a doctors advise to treat something they obviously  don't understand or even want to take the time to understand.

I have been through 4 endocrinologists and they all are the same, cookie cutter diagnosis and treatment minded, your levels are within range, shut your mouth, take your synthroid and go see other specialists to diagnose your high cholesterol, gastro intestinal, physical therapist, gynecologist and psychiatrist and LEAVE ME THE HE!! ALONE because it's NOT your thyroid.. The poor ignorant Endocrinologist who don't even give a **** anyway...

I want answers... not just for myself but for ALL OF US... I'm sick and tired of being sick and tired and i will not be 20 years from now complaining of the same things i am today.. I REFUSE to accept this as "as good as it gets" some days are better than others and just accept it attitude, not me... i WILL beat this and I WILL feel better..
649848 tn?1534637300
COMMUNITY LEADER
We're all "sick and tired of being sick and tired"............Hashimoto's is the main cause of hypothyroidism; therefore a lot of doctors "assume" that's the cause - I'm not saying that's right -- just the way it is.  

You can have a "genetic predisposition when nobody in my family has any type of autoimmune disease".

I have a son who was diagnosed at the age of 10 with Type I diabetes (autoimmune) -- that's "genetic disposition", yet no one in either MY or my husband's families had EVER had it (or any other autoimmune)...........That was in 1982 when he was dx'd and over a period of 20 yrs, no one else in either of our families had a problem ------- however, in the past 5 years, I've had a nephew (older than my son) and a sister (in her 70's) dx'd with Type I diabetes.  In addition, I have a sister (62) with Hashi, dx'd just a few months before I was in 2008; I've been dx'd with pernicious anemia (another autoimmune), plus Hashi -- all this in the past 5 years and the youngest of all is my son who was dx'd at the age of 10 --- he's now 37......genetic disposition --- I'm thinkin so.........

This is not the only disease that doctors dismiss if you are 'in range'..........."What kind of doctor does that? aren't they in the profession to HELP people?"  Yes, they are supposed to be in the profession to HELP people, but a lot of doctors dismiss things if you are in range (and I've even had some out of range dismissed), because that's what the insurance companies pay them to do...the less treatment they do for you, the less expensive it will be --- and it's likely only going to get worse with the new heath care issues in front of congress.........

you have only been dx'd a short time ago and haven't really been on med long enough for it to do a lot.  I know it's hard, but I have to say "patience, patience and more patience".  It's not easy, but that's what it takes.  It has to go slow and easy or it will actually take longer to get to feeling better.......

Avatar universal
I was diagnosed and have been on treatment for 3 years.... I think that is a long enough time to give these doctors to figure things out for me.. Same treatment for a 3 year period  + same results = INSANITY.. In my opinion...
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