# ?'s...Newly diagnosed



## darlisar (Aug 1, 2010)

My daughter was diagnosed with Hashimotos 3 years ago when she was 10 years old(no noticeable symptoms w/TSH testing over 100 at diagnosis). Two weeks ago, when going to the dr myself for severe constipation and telling dr about family medical history she decided to run a TSH and antibodies test on me. I received the results in the mail stating I tested positive and too had Hashimotos, but TSH was normal and to just monitor it. For as long as I can remember my hands and feet are always freezing, and am cold all the time. Constipation(about once every 7 days if I'm lucky), and more recently frequent headaches along with occasional migraines. My question is 1)does this sound right to just occasionaly monitor my TSH and 2) I have an 11 year old son, should I ask to have the anitibodies test done on him as a preventative?
My lab results:
TSH-3.71 with normal range .35-4.0
THYROPEROXIDASE Antibody-940.9 with normal range <5.6

Any advice would greatly be appreciated!


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## Octavia (Aug 1, 2011)

darlisar, welcome!

I am not a Hashimoto's expert, but I do have a few thoughts to share. For my entire adult life, I was cold, but the few times I had my thyroid levels tested, they were always "normal" (I have my doubts about that). I have also seen gastroenterologists for years for stomach/digestive issues.

Fast-forward to last year...I had my thyroid removed, so I'm now taking replacement hormone and keeping my TSH suppressed (because of my cancer diagnosis), and whaddya know - I'm not as cold as I used to be, and my stomach feels better almost all the time! So....as I mentioned, I have my doubts about my thyroid levels truly being "normal," but at this point, it makes no difference.

Regarding your son...if he tests positive, does that give you an opportunity to keep a better eye on things as he matures? I would say it's worth a shot, if that's the case. If it will just create worry, then maybe not. (Then again, if you don't get him tested, the not knowing could create worry as well.)


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## darlisar (Aug 1, 2010)

I too have seen a gastro dr within the last 6 months. It was for side/abdominal pain. Had an endoscopy done which said I had GERD and was told reason for side stomach pain. Recently had more probs with constipation and stomach pain and bloating, going as far as not being able to go at all, even with meds. Referred to gastro dr again(appt not til march). When I had my TSH tested in 2007 by gyno(no periods all year but 2 months) it was 3.86. As far as my son, wouldn't cause a concern, but instead I think be more of a relief. Apparently when my daughter was diagnosed she had had it for around 3 years(according to bone age xray) maybe longer. Had actually effected her growth hormones. So always a thought that might happen with him and not know til further progressed. Appreciate your response and thoughts on things


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## northernlite (Oct 28, 2010)

Although you should have a full thyroid blood panel the indications from what you provided are that you are hypo now. The recommended maximum for TSH is 3.0 although many labs still use the old value of 4.5 or even higher. Your TSH is not normal, it indicates you are currrently hypothryroid. You are above 3.0 and I would guess you would benefit from a trial of of Levothyroxine. You can try printing out the new guidelines for TSH level and sharing them with your doctor but you might need a new doctor.

With respect you your son, with the family history, I would insist they run a TSH with any blood draw he has. There is nothing they will do with the antibody number (as you have personally experienced) if the TSH is not bad so a TSH is an easy, less expensive blood test and is a good way to keep track of his thyroid health. You want to catch his if he is going to go way up like his sister's did.


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## peacesells560 (Aug 9, 2011)

I would definitely make sure your son got the TPO/TG antibodies test because of the family history. Hashimoto's does favor women, but men get it too {I'm one of them, I've had it since I was 14, but I wasn't diagnosed until I was 22, long horror story}.


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## Lovlkn (Dec 20, 2009)

darlistar,

A more "normal" TSH reading would be in the 1 to 1.5 range, you are high enough with antibodies to warrant further testing.

Your TSH and antibodies tests point to you being hypo thyroid. Please find a new doctor and see if they will do further testing to confirm, FT-4 and FT-3 testing should be a first line to determine your actual thyroid blood levels.

As far as your children a TSH, FT-3 and FT-4 would be the first tests I would run to determine if they have thyroid issues as well.

Constipation is a hypo symptom. I had all sorts of gastro symptoms when I was hypo - that has so far been the worst part of my thyroid disease. No more now that my thyroid levels are in line. It will get better for you.


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## bigfoot (May 13, 2011)

Totally agree with everything that has been posted -- you have to be very persistent with the doctors and do a little research and Q&A on your own. That is awesome that you have come here to the forum to get some info! I also was told my thyroid was "fine" many, many times (it wasn't). Having a lab value be within a range and having your body's performance optimized are two totally different things. Like others have mentioned, your TSH is hypo (over 3.0), as is your daughter's. If either one of you are having symptoms it would definitely be in your best interest to follow things more closely, get second (or third) opinions, and look at starting thyroid medication. There just isn't enough of a consensus between doctors and the medical community right now to get ideal treatment without advocating for yourself (or your family). If you leave it to them it might be years, decades, or never when they finally decide things have gotten "bad enough" to warrant treatment.

Also, watch out for doctors who strictly go by TSH only (you also want to incorporate the FT4 and FT3 that's been mentioned), and those antibody tests can give everyone an idea of what's going on behind-the-scenes. Also watch for any doctors who start to brush you off or dismiss your concerns. Ultrasounds are another way easy to get more background information.

Don't worry, you and your family will do great! Getting the knowledge and having a game plan going forward is 99% of the battle. You have already done that big step...

:hugs:


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## darlisar (Aug 1, 2010)

Thanks everyone for your replies! My daughter is on medication and sees a pediatric endocrinologist that is great!! She has an appt next month so I think I will ask the dr's opinion on myself and also if my son should be tested. If she agrees with everything being said, then maybe I can get a referral from her(Kaiser ins). All this info will be useful when I do talk to her. If all this I am feeling is from being hypo, I sure hate to imagine how my daughter was feeling with her TSH over 100


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## Andros (Aug 26, 2009)

darlisar said:


> My daughter was diagnosed with Hashimotos 3 years ago when she was 10 years old(no noticeable symptoms w/TSH testing over 100 at diagnosis). Two weeks ago, when going to the dr myself for severe constipation and telling dr about family medical history she decided to run a TSH and antibodies test on me. I received the results in the mail stating I tested positive and too had Hashimotos, but TSH was normal and to just monitor it. For as long as I can remember my hands and feet are always freezing, and am cold all the time. Constipation(about once every 7 days if I'm lucky), and more recently frequent headaches along with occasional migraines. My question is 1)does this sound right to just occasionaly monitor my TSH and 2) I have an 11 year old son, should I ask to have the anitibodies test done on him as a preventative?
> My lab results:
> TSH-3.71 with normal range .35-4.0
> THYROPEROXIDASE Antibody-940.9 with normal range <5.6
> ...


That does not make sense because severe damage can occur to your bowel and other bodily organs.

Also, with TPO that high, I would like to suggest that you insist on ultra-sound and Thyroglobulin Ab to see if you have cancer.

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Anti-microsomal Antibodies- TPO Ab
Negative test is normal; you should not have any of these antibodies. And the healthy person does have a low titer of TPO.
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

TPO Ab
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

TPO Ab should be negative, 0
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

(The normal thyroid has TPO but should not have antibodies to TPO)

I share your concern.


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## joplin1975 (Jul 21, 2011)

Agreed with Andros. My TSH was in the low 4s, with normal free T4 & free T3...my TPO was around 780. I had five thyroid tumors with cancerous invasion into three lymph nodes. It could be Hashi's, but why not rule out cancer?


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## darlisar (Aug 1, 2010)

I never even thought of having an ultrasound done to check for thyroid cancer, and that being a cause of it being high. I know my daughter had one done when diagnosed, but thought it was routine precautionary measure. I just assumed since daughter has it, and I tested positive, it was the same thing. Although when talking with my dad I was told aa few years back my cousin on his side had been diagnosed with thyroid cancer(don't have any details re situation but trying to find out more). The letter I received from the dr just stated, and I quote ""thyroid antibodies are positive and you have Hashimotos thyroiditis. hyroid function is still within normal limit this time but may need to have it checked periodically". Also it showed my RBC low with being 3.99 and normal range 4.2-5.4, but no mention to that, so not sure if it just being a little below is significant or not. With what everyone is saying about the endo guidelines being different then reg physican guidelines I kinda feel I wouldnt get really anywhere talking to primary about this and might be better off asking my daughters endo at her next appt and getting her advice. As I would have to get a referral from my primary to see and endo first.


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## joplin1975 (Jul 21, 2011)

It's good you are following up...

Just so you know, the u/s won't show if you do or do not have cancer, but it will show if there are nodules growing on the thyroid (common for people with Hashi's). Depending on the size and characteristics of the nodules, the appropriate additional follow up, testing, or monitoring can be determined. Good luck!


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## darlisar (Aug 1, 2010)

Good to know about the u/s not showing if cancerous or not, I misunderstood that. So then is it more common for people with Hashimotos to develop thyroid cancer? As a mom of a daughter with it, and her only being 13 now, that is a scarey thought. When she had her u/s at 10 years old, the results came back normal. What would be the things to watch out for, for that? I have been trying to educate myself on all the different things related to hashimotos since finding out she had it. It broke my heart to learn that she had had the condition for so long without it being detected. She was maintaing good grades(3.0 or better however after starting meds, started getting 4.0), some tiredness, but was explained by being in competitive cheer, which would also explain away the weight gain. Occasional constipation, but was thinking dairy related. The day I took her to the dr for a sports physical was when I had noticed she hadn't grown any in the last few visits that year and was going to mention to dr. Thats when dr found goiter. At that point her thyroid was completely destroyed and non functioning, medication will be for life. And bone age xray showed them being around age 7-7 1/2 years old. Which leaves a mother thinking, how could you have not known something was going on. Since starting thyroid med and levels coming down, seems like she has started to experience more symptoms of the condition. Weight gain, even with counting carbs and eating healthy(some attributed to puberty though), hair clumps falling out in shower, very dry itchy upper legs(sometimes so much their hurt). So I have been trying to learn all the different things associated with this so we know what to expect or know when should call her dr. And know, for myself as well.


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## joplin1975 (Jul 21, 2011)

My understanding is that people with autoimmune thyroid issues are more prone to thyroid cancer, but Hashi's does not automatically = cancer...particularly if the thyroid issue is being treated. I ignored my relatively minor symptoms (assumed it was part of the aging process), so I think that, in part, was what got me in trouble.


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## Andros (Aug 26, 2009)

darlisar said:


> I never even thought of having an ultrasound done to check for thyroid cancer, and that being a cause of it being high. I know my daughter had one done when diagnosed, but thought it was routine precautionary measure. I just assumed since daughter has it, and I tested positive, it was the same thing. Although when talking with my dad I was told aa few years back my cousin on his side had been diagnosed with thyroid cancer(don't have any details re situation but trying to find out more). The letter I received from the dr just stated, and I quote ""thyroid antibodies are positive and you have Hashimotos thyroiditis. hyroid function is still within normal limit this time but may need to have it checked periodically". Also it showed my RBC low with being 3.99 and normal range 4.2-5.4, but no mention to that, so not sure if it just being a little below is significant or not. With what everyone is saying about the endo guidelines being different then reg physican guidelines I kinda feel I wouldnt get really anywhere talking to primary about this and might be better off asking my daughters endo at her next appt and getting her advice. As I would have to get a referral from my primary to see and endo first.


Low RBC is very significant. It could mean anemia which is common in hypothyroid. So, a ferritin test would be good.

Ferritin http://www.thewayup.com/newsletters/081504.htm
(should be 50 to 100; the closer to 100, the better)

Also, while it is true that the presence of high TPO is found in patients w/Hashimoto's; that just happens to be one of those things and is in no way definitive as a stand alone diagnosis.

Only FNA can be definitive if Hurthle Cells indigenous to Hashimoto's are found by the pathologist. Then it is undeniable. Furthermore, there are cancerous Hurthle Cells as well.

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2


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## darlisar (Aug 1, 2010)

thanks, after seeing that the RBC what low, but not being addressed in the letter I was thinking that maybe it being just slightly low was not a concern or was normal. Looking back on labs from last year it was the same then too(3.99). Checked my sons online(advantage of Kaiser) and my sons were lowtoo(2009).If this means anything to anyone would love to hear
WBC'S AUTO 4.1 norm range 4.5 - 14.5 
RBC, AUTO 3.84 norm range 4.0 - 5.2 
HGB 11.9 norm range 11.5 - 15.5 
HCT, AUTO 34.1 norm range 35 - 45 % 
MCV 88.8 norm range 77 - 95 FL 
MCH 31.0 norm range 25 - 33 PG/CELL 
MCHC 35.0 norm range 31 - 37 G/DL 
RDW, BLOOD 12.4 norm range11.5 - 14.5 % 
PLATELETS, AUTOMATED COUNT 254 norm range 130 - 400 X1000/CUMM 
MPV 9.4 norm range 7.4 - 10.4 FL


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## Andros (Aug 26, 2009)

darlisar said:


> thanks, after seeing that the RBC what low, but not being addressed in the letter I was thinking that maybe it being just slightly low was not a concern or was normal. Looking back on labs from last year it was the same then too(3.99). Checked my sons online(advantage of Kaiser) and my sons were lowtoo(2009).If this means anything to anyone would love to hear
> WBC'S AUTO 4.1 norm range 4.5 - 14.5
> RBC, AUTO 3.84 norm range 4.0 - 5.2
> HGB 11.9 norm range 11.5 - 15.5
> ...


Well; there are quite a few below range results that leads me to think your son's ferritin, your's and your daughter's should be checked as per the link I provided. Hubby?

There could be a genetic link. Are you a vegetarian family?


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## darlisar (Aug 1, 2010)

Yes I noticed that too. But at the time was never told anything in reguards to it by the doctor. As far as the kids dad, he left when the kids were 4&6 and is not in their lives(his choice). What would the ferritin indicate or what could it be a sign of?


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## Andros (Aug 26, 2009)

darlisar said:


> Yes I noticed that too. But at the time was never told anything in reguards to it by the doctor. As far as the kids dad, he left when the kids were 4&6 and is not in their lives(his choice). What would the ferritin indicate or what could it be a sign of?


If low, malasorption/celiac disease, of course excessive bleeding which I know can be ruled out,not enough consumption of foods high in iron, hypothyroidism and vitamin C deficiency.

In the grand scheme of things, it would appear the children have the very best mom in the whole wide world. That puts the scale in better balance.


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## darlisar (Aug 1, 2010)

Thanks so much for the response and the compliment! I may just be being a worry wart, but after reviewing his labs from a little over 2 years ago, and mine as well, I definately think it wouldn't hurt to go ahead and have another physical requesting blood work for him(he has them yearly for football, but no lab work with it). And will definately follow thru with asking my daughters endo her opinion on things. All this information has been very informative!!


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## Andros (Aug 26, 2009)

darlisar said:


> Thanks so much for the response and the compliment! I may just be being a worry wart, but after reviewing his labs from a little over 2 years ago, and mine as well, I definately think it wouldn't hurt to go ahead and have another physical requesting blood work for him(he has them yearly for football, but no lab work with it). And will definately follow thru with asking my daughters endo her opinion on things. All this information has been very informative!!


And please keep us informed. I for one would like to know the doctor's comments.


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## darlisar (Aug 1, 2010)

I definately will. I actually went ahead and scheduled my son a check up, and am gonna ask if she can run routine blood work(as I noticed previous time his were low). Also will just throw in there was suggested by my dr to have the antibodies test run(doesn't hurt to fib a little, it was suggested for me afterall). My son has actually been on the low end of the % scale for weight, and just barely broke the 10th percentile. Although, as frustrating as it is to his sister(hashimotos) eats as much as he wants- Bu recently has gone thru spells where I can't seem to get him to eat much at all. Which before all this had commented to family member was a little concerned. I thought the suggestion about family link to low iron was interesting and will be looking into that as well. This site has been very informative


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## Andros (Aug 26, 2009)

darlisar said:


> I definately will. I actually went ahead and scheduled my son a check up, and am gonna ask if she can run routine blood work(as I noticed previous time his were low). Also will just throw in there was suggested by my dr to have the antibodies test run(doesn't hurt to fib a little, it was suggested for me afterall). My son has actually been on the low end of the % scale for weight, and just barely broke the 10th percentile. Although, as frustrating as it is to his sister(hashimotos) eats as much as he wants- Bu recently has gone thru spells where I can't seem to get him to eat much at all. Which before all this had commented to family member was a little concerned. I thought the suggestion about family link to low iron was interesting and will be looking into that as well. This site has been very informative


Bless your heart. We are all very interested parties so we will be waiting to hear what you find out.


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## darlisar (Aug 1, 2010)

Glad to report the dr's said my son tested negative, and all levels seemed to be in normal range


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## Andros (Aug 26, 2009)

darlisar said:


> Glad to report the dr's said my son tested negative, and all levels seemed to be in normal range


Can you get a copy of the lab report with results and ranges? That is if you would like us to have a look?

Would like to know what tested negative and I don't care for the word seemed.

Good to hear from you!


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## darlisar (Aug 1, 2010)

This was his lab results. I said seemed cause at first I wasn't sure how to interpret the TPO results. I was looking for simple term, positive or negative -I called and they said his results meant negative because they were below the normal range. Like I mentioned earlier the reason for gap was because I had his checked when my daughter was diagnosed and then I also did this last time when I was told I had Hashimoto's as well.

2/17/2012
TSH 2.79 norm range .4-4.0
Free T4 1.04 norm range .81-1.54
TPO AB <3.0 norm range <5.6

5/6/2009
TSH 1.51 norm range .4-4.00
Free T4 .90 norm range .81-1.54


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## Andros (Aug 26, 2009)

darlisar said:


> This was his lab results. I said seemed cause at first I wasn't sure how to interpret the TPO results. I was looking for simple term, positive or negative -I called and they said his results meant negative because they were below the normal range. Like I mentioned earlier the reason for gap was because I had his checked when my daughter was diagnosed and then I also did this last time when I was told I had Hashimoto's as well.
> 
> 2/17/2012
> TSH 2.79 norm range .4-4.0
> ...


What I see is that the FT4 is below the mid-range of 1.17 which I don't consider good and the TSH kind of high. AACE recommends 0.3 to 3.0. Not sure if there is a difference for pediatrics though.

There is a smattering of TPO AB. There should be none.

Does your son complain about anything in general or specifically re how he feels?


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## darlisar (Aug 1, 2010)

Range is not different for peds. I too was wondering about the TPO because it said <3, read results online and of course had to be on a Friday. Left msg for dr, and nurse called back saying anything below the normal is considered negative. I had read both that under normal range means negative, and any showing up means positive. I also noticed that his TSH had gone up since last time. He is 11 1/2 could this be due to puberty? As I know my daughter with Hashimotos was told her TSH would flucuate during puberty. My daughters endo appt is the 26th, I had planned on asking her dr her advice and recommendation re myself as my TPO's were 941.9 and TSH 3.89. But dr just said monitor periodically. I guess I could ask her her opinion about my son as well since it is her specialty after all. But for now all I can do is keep eye and monitor.


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## Andros (Aug 26, 2009)

darlisar said:


> Range is not different for peds. I too was wondering about the TPO because it said <3, read results online and of course had to be on a Friday. Left msg for dr, and nurse called back saying anything below the normal is considered negative. I had read both that under normal range means negative, and any showing up means positive. I also noticed that his TSH had gone up since last time. He is 11 1/2 could this be due to puberty? As I know my daughter with Hashimotos was told her TSH would flucuate during puberty. My daughters endo appt is the 26th, I had planned on asking her dr her advice and recommendation re myself as my TPO's were 941.9 and TSH 3.89. But dr just said monitor periodically. I guess I could ask her her opinion about my son as well since it is her specialty after all. But for now all I can do is keep eye and monitor.


That is all you can do for now. Have you had an ultra-sound of your own thyroid?

Have you ever had Thyroglobulin Ab labs test?


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## darlisar (Aug 1, 2010)

No, I haven't had an ultrasound done. The dr that had ordered the lab work, just sent a letter in the mail stating I had Hashimoto's, but TSH was in range(3.89) and to just monitor it periodically. This was not my reg dr, I had emailed my dr before getting the letter asking what the TPO results meant. He replied he didn't even know why that test was ordered when my TSH was in normal range. And that was it. I had responded because I was being seen for severe constipation, my daughter has hashimotos, and other dr said it's hereditary. I didn't get any response to that. I finally go to the gastrenologist on the 20th so I don't know, maybe he will say the two are related and be of some help. Otherwise, my daughters poor dr, will be the one left to ask these questions.


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