Hoshimoto's Thyroiditis Normal THS

[NPennsylvania]

I am 30 yrs old, I have a family history of Hoshimoto's and was recently diagnosed with Hoshimoto's Thyroiditis but my THS levels are in the normal range.  
Unfortunatly, I am already experiencing several of the side effects of Hoshimoto's including weight gain, severe fatigue, hair loss, depression & mood swings, muscle pain, etc.  the symptoms are the reason I ended up going to my Doctor and finally saw an edocrinologist.  
My endocrinologist tells me that she won't treat me yet because my THS levels are still normal and she just wants to continue monitoring me.  That she will see me every six months and when the levels are low enough she will start treatment.  Oh - plus she insists that my symptoms are not a result of the hoshimoto's thyroiditis but that they must be a result of something else.  What!  I've been doing a lot of research on the subject and what she's telling me and what I'm reading are telling me two different things.
I have a family history, all the symptoms and I just don't see why I have to live with all these horrible symptoms without treatment.  In my research I've read that when antibodies are present it's been effective to treat with a low dose of replacement hormone even when the THS levels are normal - that when this is done it can slow the progression of the disease.
I just can't see sitting back and waiting, knowing that the disease is destroying my thyroid when I could be receiving treament and trying to slow or stop it.  
Has anyone else been in my situation or know anything about this?  Any information would really be appreciated.  The thought of going through what my family members who have this - or gaining one more pound, or being tired for one more day scares me to death.
Thanks, Nicole

[stephanie778]

I have the exact situation and am looking for a new doctor that treats this. The stress of some doctors do and some don't is nuts. This leads to heart disease so I have to wait to have that it is nuts. Very very stressful and it makes everything worse to read that it truly needs to be treated and yet it is a fight with doctors.

Stephanie

[goolarra]

Make sure to have both antibodies tested...TPOab and TGab...some of us with Hashi's are positive for one, some the other, and some both.

In addition, make sure your doctor requests FREE T3 and FREE T4 as well as TSH.  It's very important to speciify FREE.  Otherwise, they'll run total T3 and total T4...not nearly as useful.  When you have your blood drawn, verify again that they've ordered FREES.

[SoooDone]

I can relate to so much of what has been said here! I have suffered from many of the symptoms associated with hypothyroidism for a year and a half. So far I am being treated for some of the symptoms seperately: Zoloft for depression, prescription ibuprofen for carpal tunnel, Pantoprazole for reflux (which was supposedly the reason for my chronic throat issues, swollen tongue and fatigue due to lack of sleep), and Betamethasone for eczema. Several other symptoms have simply gone untreated. My doctor did test my thyroid in 2010, but I don't know if he is looking at the antibodies. I am going to see him today and request full thyroid bloodwork. I hope I can get to the bottom of this! It is such a relief to know that there may be light at the end of this tunnel, because my quality of life absolutely *****. Thanks to all of you for sharing your stories!

[ManyQuestions99]

Hi Folks-

I know that this is a pretty old conversation, but I was diagnosed with Hashimoto's about two months ago and was a little concerned about the approach my Dr. is taking, so I figured I would reach out in case anyone is still there.  My TSH levels were normal about 2.3 or so and it was the presence of a low level of TPO antibodies (around 70) that made her think Hashimoto's.  She decided to start me on  levothyroxine right away (50 mcg) as preventative treatment.  She measured my TSH levels again a few weeks ago and decided to increase the dose to 75mcg as she wants to get my TSH levels down below 0.88 (they were 1.881) to prevent Thyroid damage in the long run.  I am appreciative that she is taking a proactive approach, but am a bit hesitant after reading a few articles stating that there can be long term complications of this type of therapy, including Osteoporosis.

I was wondering if any of you have heard anything new on this subject...  I am pretty young to be diagnosed with this from what I gather (I'm 27) and I will be taking hormone replacement for a long time if I start now, so  this is why I worry about the long term effects of this treatment.

Oh, and P.S. I had started having panic attacks like 1.5-2 yrs before I was diagnosed and It has been hell...  I keep reading posts from women who say the same thing, but even my Dr. who is good about listening to me doesn't think that these can be caused by Hashimoto's, esp because my tests don't suggest hyperthyroidism.  I think that is interesting, esp. since my panic attacks have greatly decreased in the few months that I have been taking  levothyroxine... Go figure!

[PDee]

I think one of the problems is that the "old time" Doctors do not keep up on what the current guidelines are.  My Doctor will not treat me unless my TSH is above 10 or if I want to have children.  But according to the new guidelines there is a basis for treating Hashi's even if your TSH is not that high.  The following is a quote from:

http://www.aace.com/pub/guidelines/

AMERICAN ASSOCIATION OF CLINICAL ENDOCRINOLOGISTS
MEDICAL GUIDELINES FOR CLINICAL PRACTICE
FOR THE EVALUATION AND TREATMENT OF
HYPERTHYROIDISM AND HYPOTHYROIDISM
2006 AMENDED VERSION

"Treatment of subclinical hypothyroidism remains
controversial, and recent arguments for and against treatment
have been proposed (19,21). We believe that treatment
is indicated in patients with TSH levels >10 μIU/mL
or in patients with TSH levels between 5 and 10 μIU/mL
in conjunction with goiter OR positive anti-thyroid peroxidase
antibodies (or both). These patients have the highest
rates of progression to overt hypothyroidism. An initial
dosage of levothyroxine of 25 to 50 μg/day can be used,
the serum TSH level should be measured in 6 to 8 weeks,
and the levothyroxine dose should be adjusted as necessary.
The target TSH level should be between 0.3 and 3.0
μIU/mL. Once a stable TSH level is achieved, annual
examination is appropriate."

Now if only my doctor would pay attention.

[Yvsie]

I too am new to this forum and also an RN. Funny how us nurses seem to be soo complicated!
I have very high antibodies TPO >100 and the globulin one 212. My TSH was slightly raised and now is normal. my free t4 and free t3 are within normal limits. ultrasound scan confirms thyroiditis.
I am due to see an endocrinologist in early november and hope that he will start me on a low dose as I am suffering with numerous symptoms which I have always blamed on menopause/ stress etc etc. the thought of being started on medication and knowing that I might feel better is brill!! i cant take hrt because I had a pulmonary embolus.
fingers crossed for the endo
Yvonne

[TCav]

I never realized how common this illness was until reading this site for the first time today.  I was experiencing severe fatigue and major hair loss.  It was shortky after I had my son so most doctors were blaming my symtoms on my changing hormones he was a year old.  I had to push to have my thyroid tested and my doctor was shocked to learn that I was right.  He monitored my levels for 3 months before sending me to an endo.  I was placed on Synthroid.  I am still in the process of adjusting my levels.  My symptoms have not gone away and new ones are happening at each adjustment but if I had not insisted I never would have known.  Fight for yourself and your health.

[borninquisitive]

It's a long, frustrating road! A doctor wanted to prescribe Paxil for anxiety, my next doctor (co owner of the clinic) wanted to give me anti depression meds. Called me a hypochondriac. Then a test came back, with elevated antibodies. For which I had to push for.

I repsonded to one of your other posts. Don't know if you will find luck but I hope you do!

Best,
~Kate

[Dee j]

Hi all,

New to this site. I have been diagnosed with Hashimoto's. I have high antibodies but normal Tsh.Although over the past two weeks it has risen slightly.I went to an endo who won't treat me. My GP sent me to him because she believed that my new found panic attacks and depression were hypo related.
But the endo won't treat me at this time. I also have muscle aches, fatigue, headaches,diarrhea, brain fog. I am in search of a endocrinologist who is more open minded. I have been experiencing living hell for about one year now. Does anyone have any suggestions on a good endo from Massachusetts. Any info would be appreciated. I also believe its **** that you have to have a out of range TSH to have symptoms. And I am living proof. You have to advocate for yourself because the Dr's are not God like some of them think. By the way I am an RN and have been in this career for 20 + so I know how Dr's can be and you need to be careful and not give up.

Thanks
Denise

[borninquisitive]

h/h,

I just wanted to thank you for your testimony. It is reasurring and good to hear that you were treated, despite the controversy on this matter. It's great to hear that you are doing much better.

There is hope and your story is testimony to that. It's a matter of finding a good, caring doctor who doesn't mind standing on his/her own two feet and treat based on clinical findings (determined Hashi) and symptoms.

Thanks again for posting.

Best,
~Kate

[hypo/hyper]

Well, I guess I will add my two cents for what it is worth.  This is just based off of my experiences alone.  I am also an RN, who had a very similar case to what you are describing.  My TSH was considered "normal"  origionally it was 5.8, then it went back to 2.5, then back up to 4.2 and then it was 3.5.  This was charted over a few weeks.  My antibodies were positive for Hashi's.  I HAD been completely healthy, or so it seemed.  Then I was hit with panic attacks and anxiety from hell, and the rest of all the hyper symptoms, followed by a few weeks of hypo symptoms.  My period is all screwed up (completely normal prior to all this).  I would cycle back and forth and back and forth.  I realize now, that it is Hashitoxicosis.  My endo did not want to treat me until my TSH was 10.  But due to the constant fluctuations and the cycle of horrible symptoms, he trialed me on levothyroxine.  My two main concerns were the chest pains with the heart palpitations and the bounding heart beat, and the major hairloss I was experiencing, but that was just the tip of the iceburg.  Really, the tip of the iceburg......Anyway, I was told that he felt that my symptoms had to be related to something else, but was never offered any ideas as to what.  I went to see a dermatologist for the hairloss, he said it WAS totally related to the thyroid.  AND with the trial of levothyroxine, voila all the symptoms seemed to magically disappear, except for the horrible choking feeling that still remains.  Really,  I am feeling very much back to my normal self.  I don't know where I would be right now had he decided not to trial me.  So, basically, my story seems to coincide with the evidence that supports giving low dose treatment to prevent the progression of Hashi's.  Go figure.  The thyroid is such a controversial thing, especially the treatment.  If it hadn't been for my journey with this, my sister would have never found out she had Stage 3 papillary thyroid cancer.  Thyroid issues run on both sides of my family big time.  Good luck with this.

[borninquisitive]

In this writing, it states Hashimoto's as a disease.

Takamatsu et al., Osaka, Kobe and Mibucho, Japan, studied characteristics of three groups of patients with Hashimoto's disease, i.e. having both TGAb and TPOAb, TGAb alone, or TPOAb alone.
Of 401 patients with Hashimoto's thyroiditis:
79% had both antibodies,
19% TGAb alone,
and 2% TPOAb alone.
Age, gender-ratio, and incidence of familiar predisposition were similar in the three groups. The main findings were that patients with TGAb alone have frequently nodular lesions i.e. 53% versus 20% TPOAb alone, and 9% both antibodies. In this group hypothyroidism was relatively rare i.e. 23% versus 50% and 58% respectively. The frequences of low echo-amplitude of the thyroid were 26%, 0%, and 69% respectively.
http://www.merck.de/servlet/PB/menu/1266180/1266180.html

In my mind, if somebody is experiences so many thyroid symptoms, despite a normal TSH and then later, find out of range antibodies (and thinking imaging comes after) and diagnosis is Hashimotos...I can't think their symptoms are purely coincidental. Maybe other things are a factor but by the same token, perhaps not.

That said, I should think the Doctor would have excluded other causes of symptoms.

[borninquisitive]

I think treatment could be had here, in the US.

I think it's good to be cautious. I don't think being on either extreme is a good idea.

To the original poster (and yes, there is debate on this also):

American Association of Clinical Endocrinologists:

[GravesLady]

All I can suggest is to go to Japan or Germany to get treated.

I prefer the US.

No disrespect intended - just a matter of preference.

I don't debate these issues due to Graves' Rage.
Besides the US Gov.  data speaks for itself.

GL

[NPennsylvania]

I guess I forgot to mention in my original post that the Dr did test me for everything from lupus to low iron to diabetes (pretty much everything you can think of) when she originally tested my thyroid.  So when I was back in her office and she told me about the Hoshimoto's Thyroiditis she said she can't think of anything else that would be causing all of these symptoms but that it's not the thyroid.  
I don't know, I'm just reading a lot of things that says you can have normal THS levels and still be symptomatic.  I've read about that study that was done concerning treating those who have the antibodies but are still within normal THS - and also the debates on it.  So I really don't know what to do -  like I said before,  I've seen what family members have gone through with this and the Dr has ruled out pretty much everything else for the symptoms.  I know it's not all in my head (how I feel I mean) so the only other option for me is to go to another Dr and hope he/she either treats me or figures out what in the world is making me feel so horrible!  I was just looking to see what others thought who had more experience with all of this.  So, if anyone has anymore to add - I'm will to listen.  
Thanks again for all your help.  I really appreciate it!  Nicole

[borninquisitive]

As an aside NP, I have elevated TgAb and in range TPO (no dx as of yet). My TSH is within range. I too have been dealing with numerous symptoms. It wasn't until April that I was tested for antibodies. All previous thyroid  tests were TSH.
My Dr will be running thyroid tests again next month, I do believe.

It has been suggested I get an US.

For years, I have been taking Selenium and just read not long ago that this can be helpful for thyroid patients and can reduce TPO antibodies.

[GravesLady]

My reference is based on the US Government Guidelines set forth by
U.S. Preventive Services Task Force (USPSTF) Jan 14, 2004.

It also depends on which grades of hypothyroidism referring to, which again, depends on and relates to, levels.

Antibodies - Re:
Johns Hopkins Autoimmune Disease Research Center
labtestsonline
medicinenet.com
MyThyroid.com: Blood Tests
US Government Guidelines (USPSTF) Jan 14, 2004

GL

[borninquisitive]

"Doctors do not diagnose and treat based solely on symptoms alone."

Prior to the TSH test which -from what I am told -came out in 1973 they did.  

It would be interesting to know, how many who were treated for a thyroid conditon prior to 1973 were misdiagnosed.

With a confirmation of Hashimotos and symptoms w/o elevated TSH, I do think some doctors would treat. Again, there seems to be a debate in regards to this.

"Just because you have Hashi antibodies doesn't mean you will come down with thyroid disease."
"Thyroid levels are the determinating factor, antibodies just confirm."

Hashimotos in itself is considered a dieses, no?

I wonder if any studies have been done, showing x number with Hashimotos having a normal TSH-progressed to hypothyroid (out of range TSH). Anybody have a reference site for this?

[borninquisitive]

There seems to be two schools of thought on this-it's debatable. That said, I did post this question to Dr. Lupo today.

6)There seems to be 2 schools of thought in regards to Hashimotos, those with in range TSH. a) treat b) do not treat.
What is your possition on this?

C&Ped from another site:

[GravesLady]

What was your TSH, FT-4 and FT-3 levels with Labs reference range.

I agree with your doctor.  Doctors do not diagnose and treat based solely on symptoms alone. Symptoms might not be from thyroid. A lot of other health conditions share a lot of thyroid symptoms.  After diagnosed with levels and treated, then symptoms  are taken into consideration, along with  levels.  
We shouldn't blame everything on our thyroid. Women without thyroid problems experience these symptoms too! The same goes  with antibodies, autoimmune thyroid such as Hashi. Just because you have Hashi antibodies doesn't mean you will come down with thyroid disease. Thyroid levels are the determinating  factor, antibodies just confirm.  However, if you carry the Hashi antibodies, then have levels checked on an annual bases for your Hashi levels might show up in the future, then you will be treated.

All the above is dependent on what your levels relate.  

Last thought. In some cases, to determine treatment, considerations are; thyroid levels, symptoms and family history.

Good Luck!  GL