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01-04-2012, 06:08 PM
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#1 | Junior Member (female)
Join Date: Nov 2011 Location: Champaign, IL USA
Posts: 21
| Questions about Hashimoto's Hello... as a newby, I posted under the catagory Autoimmune Diseases & never got an answer. I was hoping to have a head's up on Hashimoto's before I went to see the Rheumatologist for my lab results. The reumy mentioned that Hashi's was a possibility at my last appt. Well, after getting the confirmed diagnosis from him today, I still have questions. When I started to ask him, he said that as a rheumatologist, his job was OVER. My pain management Dr. referred me because of a 1:160 tilter on my ANA. Now that he has found out what disease I have, that is all he will do!!! I didn't like him much anyway, so even though I was shocked... good riddance!!!
He said to return to my regular Dr. for an updated thyroid check, so since my regular Dr is in the same office, I asked if he would order the labwork. I have been on Levoxyl for years & he said that my TSH was checked last January. They were fine then, but were due to be checked again. I had them draw the labs before I left the office today, so do not know the results yet.
I do not have a follow-up with anyone & I have many questions about Hashimoto's! I have checked many website, but they do not answer the questions I have. First of all... should I see another specialist? So far, I have seen a neurologist, pain specialist & now a rheumatologist in the past 4 yrs.
Along with Hashimoto's, I have Fybromialgia and many (11) ruptured discs in my neck & lower back, spodylosis & OA in my spine, ankles, hips & knees. I have periods of confusion & short-term memory loss. Could this be caused by Hashimoto's? Will the Hashimoto's make this worse over time? I know that the fybromialgia deals with nerve endings, which is being treated by Cymbalta. But my joint/spine problems keep me practically bedridden & on narcotic pain meds. I have been tested for MS & it strongly runs in my family. I have faint white matter in the frontal lobe of my brain, but my spinal tap was negative. My regular Dr said that with a strong family history & now having Hashi's, that it could possibly lead to MS. Is this true??? |
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01-04-2012, 10:05 PM
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#2 | Senior Veteran (female)
Join Date: Jan 2003 Location: Missouri, USA
Posts: 12,925
| Re: Questions about Hashimoto's
It seems you'll be surprised to learn that Hashimoto's has no symptoms of its own. The only thing it does is cause thyroid failure resulting in hypothyroidism. It's the hypoT which causes the symptoms. And the treatment for hypothyroidism caused by Hashi's is the same as the treatment for hypoT due to any other reason. There is no cure for Hashi's. So, at this point, years after you've started treatment for your hypoT, the Hashi's is a moot point. The situation is analagous to the bop your little brother gave you when you were six that caused a scar on your leg. The scar is there, you could "treat it" with plastic surgery, but nothing can undo the bop.
You have many, many symptoms that are the same as under-treated hypothyroidism. There are several experts who believe that "fibromyalgia" is not a disease unto itself, but the manifestation of unrecognized, atypical, or inoptimally treated hypoT. I'm inclined to believe that you are probably one of them.
There are several red flags in the story you're relating that lead me to further believe you aren't getting the best thyroid care.
First, ANA is not the test used to diagnose Hashi's. TPO and Tg antibodies cause Hashi's, and there are specific tests for those ABs. ANAs are non-specific ABs that only suggest that the AI process is going on. It cannot specify which disease. If your rheumy didn't test for TPO and Tg ABs, he was not being as thorough as he could be. But as I said... It really doesn't matter much. Knowing you have Hashi's is more a matter of curiosity than anything else.
Second, Hashi's does not "lead" to MS or any other disease. It only affects thyroid tissue. However, people who inherit the flawed gene that allows the onset of autoimmune disease - any autoimmune disease, like Hashi's, Graves', MS, RA, lupus, etc - are predisposed to develop more than one of them. Perhaps that's what your doctor meant. I, for example, first developed Hashi's and a few years later, ITP. I keep my fingers crossed that this will be it for my lifetime.
So, my best suggestion is for you to get copies of your latest thyroid levels w ranges and post them here for comment. Pursue the issue of optimal vs. "normal" levels. Most MDs only prescribe a high enough dose to get your TSH anywhere within "normal" range instead of treating to optimize your FT4/3 levels to a place in their ranges that relieves all your thyroid symptoms. You'd be amazed at how many MDs just don't get this right.
Last edited by midwest1; 01-04-2012 at 10:06 PM.
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01-05-2012, 05:59 PM
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#3 | Junior Member (female)
Join Date: Nov 2011 Location: Champaign, IL USA
Posts: 21
| Re: Questions about Hashimoto's
I received a phone call this morning from my Dr's nurse, telling me that my TSH was "fine" & that I should stay on the same 10mg of Levoxyl that I've been taking for years. I'm just not sure what to think. I will try to get a copy of my TSH to see the exact numbers & post them.
Meanwhile, I am not sure why my ANA showed 1:160 this year causing the red flag, when last year I had it drawn & nothing was said. Is this something that just pops up all of the sudden? I was having the same symptoms last year as this year, so I don't understand. And if this year, I have Hashi's, then why doesn't my Levoxyl change? Idk... this is just really confusing to me!
Here are the lab results I have received so far...
Test Normal Abnormal Reference Range
ANA/ SEE BELOW NEGATIVE
LUPUS PANEL *
DNA AB <1
HISTONE AB <1.0
ANTI-SM SEE BELOW <1.0 NEG
ANTI-RNP SEE BELOW <1.0 NEG
RHEUMATOID FACTOR* 9 <14
SS-A AB SEE BELOW <1.0 NEG
SS-B AB SEE BELOW <1.0 NEG
CBC W/ DIF
WBC 4.3 4.5-11.0
RBC 4.39 3.80-5.30
HGB 13.1 11.7-16.0
HCT 37.9 35.0-47.0
MCV 86.3 80-101
MCH 29.8 26.0-35.0
MCHC 34.6 31.0-37.0
PLT 202 150-400
NEUTROPHILS % 56 36-75
LYMPHOCYTES % 33 20-50
MONOCYTES % 8 3-10
EOSINOPHILS % 1 0-4
BASOPHILS % 1 0-2
LYMPHOCYTE CT 1.4 1.0-4.8
NEUTROPHIL COUNT 2.4 1.8-7.7
MONOCYTE CT 0.4 0.0-0.8
EOSINOPHIL CT 0.1 0-0.5
BASOPHIL CT 0.0 0.0-0.2
RDW 10.9 9.9-17.1
COLOR P.YEL YELLOW
URINALYSIS-
pH 6.5 5.0-8.0
SP GRAVITY 1.010 1.003-1.035
APPEARANCE CLDY CLEAR
PROTEIN NEG NEG
GLUCOSE NEG NEG
KETONE NEG NEG
BILIRUB NEG NEG
BLOOD NEG NEG
UROBIL NORM NEG
NITRITE NEG NEG
LEUK TRACE NEG
RBC NEG 0-2 / HPF
WBC 2-5 0-2 /HPF
EPITH MOD FEW
BACTERIA FEW NEG
THYROID PEROXIDASE AB 99 <35
ANTI-THYROGLOBULIN AB <20 <20
COMP. METABOLIC PANEL
GLUCOSE 71 65-99
BUN 14 7-18
CREATININE 0.7 0.6-1.0
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01-05-2012, 11:18 PM
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#4 | Senior Veteran (female)
Join Date: Jan 2003 Location: Missouri, USA
Posts: 12,925
| Re: Questions about Hashimoto's Quote:
Originally Posted by Lucy56 I received a phone call this morning from my Dr's nurse, telling me that my TSH was "fine" & that I should stay on the same 10mg of Levoxyl that I've been taking for years. ... I will try to get a copy of my TSH to see the exact numbers & post them. | (Your dose must actually be .10 mgs [point one-0]. Ten mgs would be enough for 10 people at once.)
By all means, find out your TSH and post it here. But you need to know that TSH is not the best standard that smart thyroid doctors use to dose by. TSH is a pituitary hormone that only indirectly suggests thyroid status. The actual thyroid hormone levels of free T4 and free T3 are simple and easy to directly measure, so they provide the clearest picture of thyroid status. It's far better to use them as the treatment guide. There's every possibility that your thyroid doctor doesn't even test your FT4/3. Many have no clue how important that is. Then when symptoms persist or worsen, they blame them on something entirely different.
On average, optimally treated thyroid patients who take a levothyroxine product (Levoxyl, Synthroid, et al) will have TSH of 1.0 or less and free Ts well within the upper half of their lab ranges. If yours aren't similar to that, you can assume that your symptoms are very probably related to under-replacement of your thyroid and would be relieved if you were to take the right dose for your needs. Quote:
Meanwhile, I am not sure why my ANA showed 1:160 this year causing the red flag, when last year I had it drawn & nothing was said. Is this something that just pops up all of the sudden? I was having the same symptoms last year as this year, so I don't understand.
| ANAs have nothing to do with hypothyroidism. As I said, TPO (thyro-peroxidase) and Tg (thyroglobulin) antibodies are the ones that are specific to Hashi's. You're positive for TPOs, so that is the basis of the rheumy's Hashi's diagnosis. None of the antibodies themselves specifically cause symptoms. The damage that they do to the body is what causes symptoms. Antibody titers can fluctuate from test to test, being there one time but not the next. I would not attach too much importance at all to them now. Quote:
And if this year, I have Hashi's, then why doesn't my Levoxyl change?
| You have had Hashi's for years. It's what damaged your thyroid gland, causing you to need Levoxyl in the first place. It's the most common cause of hypoT in most parts of the world. Apparently, no one looked for those antibodies at that time, and they were only incidently found now while looking for something else. Or, if they were tested for, it's possible they were there in too low a titer to measure or the test method wasn't sensitive enough to pick them up.
And as I explained above, your Levoxyl dose probably does need to change. You must make sure your thyroid MD is testing your FT4/3 in addition to TSH each time, and you need to learn to interpret the results in order to make sure you're getting the best thyroid care you can.
I know it took you a lot of time to type all those test results, but only two of them (the peroxidase and thyroglobulin) are thyroid-related. I can't tell you a thing about any of the rest. Sorry.
Let us know about the TSH and free T tests, if you have them. We can comment further then.
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