For the new members - Please introduce yourselves so we can get to know you. :)

[M]

. How long have you had Hashimotos?  I believe since 2002 but wasn't offically diagnosed until 11/5/09

2. What are you doing for treatment?  synthyroid  100mcg   Vitamin d Supp, Viatmin E, Folic Acid, A multivitamin, Birth control

3. Are you satisfied with the progress or do you feel you need to find a better combination of treatment?   Since being diagnosed and having someone clearly explain what was going on with me, I feel much better. I'm ver fortunate to have a great General Practicioner who set me up with a wonderful Endocronologist

4. Have you tried any successful diets (whether for losing weight or controlling symptoms) I want to lose weight and when I checked with my Endo Dr he stated that the majority of his thyroid patients have had success with Alli. When I checked with my General Prac, he believed in the old fashion exercise and diet regimen. I'm just trying to find something that will help me be successful in losing weight.


5. Tell us anything else about yourself - age, location, etc. that you would like to share.
  I am 36 years old  married and have 1 son .

In 2002 I began having female issues. I forget the exact medical term but basically my cycle was too long. I had a D and C done and thought that would assist with "fixing" me. Less than 6 mos later the OB was wanting me to have another D and C. She had ordered an up down (which is the oxide test basically) and it came back fine.I sought a second opinion from another OB. He gave me meds to basically flush me out.... I disliked that. So, I decided I would just live with the female side of things since they couldn't find anything wrong with me. All my levels in bloodwork showed I was fine.  Now fast forward to 2008....I decided that I wanted to do something about my weight. I started Curves and began to see some results. I also found out that we were expecting. I was thrilled. After my first trimester my hubby and I began telling family and close friends. In July of 2008 I went in for my normal appt and found out that the baby had no heartbeat. I was devestated. I had to have a D and C after carrying the baby another two weeks to see if nature would take care of things... that didn't happen. After a followup with a new OB he commented on my neck and scheduled me for an ultrasound. I was diagnosed with a goiter in Dec of 2008. He admitted that he didn't know that much about thyroids and had me follow up with my General Practicioner. In the meantime I had issues with my right ear. If felt like swimmers ear and my Family/general dr couldn't find anything wrong with it. He told me that I had two options- an endo or an ENT. I opted for the ENT since he was local - He got hung up with my goiter and didn't really do anything with my ear. In the meantime, I had my Gen Pract follow up with him.

Gen Prac was instructed to run a certain blood test ( not the TSH, but I believe a TSO) It was way off. My general dr then referred me to the Endo- I had to wait 6 mos to see him. During that time my General dr had me come in for bloodwork and he started me off at 25 mgs....I'm currently on 100 mg of a generic of synthroid. He admitted that his area of expertise wasn't the thryoid but that he and I would work through this together- I appreciate honesty. He has been true to his word and has assisted me

After meeting with the endo things really began to click together. He looked at my skin, listened to my journey through this and then took the time to explain things to me in a language I understood. I can not begin to tell you the difference that you feel in KNOWING and UNDERSTANDING what is wrong with you.

I had beat myself up for gaining weight- I didn't over eat but I didn't exercise all the time and felt that was the culprit.  I called myself lazy for working a 45+ work week which is mainly a mentally challenging job vs a physical one. I was tired ALL the time and didn't have the energy for anything- my sex drive was non existent.  I would sit down to watch TV and nod off.

I have been researching this disease and educating myself.  I have discovered that even though the thyroid is a very small part of our bodies it controls so much.

I sometimes feel like an old woman with all the vitamins I take but they do help me to feel better.

Have you ever felt that you just weren't firing on all pistons? That something was just off- no motivation, no memory, no gusto.... well, since I have been on the correct dosage and added the vitamins I don't feel that way any more. I also don't have the ear issue anymore. I had another Ultrasound done and will review it with my endo but I know my goiter is smaller. I can swallow easier and it's much easier to breathe.

My longterm goals are to lose weight and try one last time for another child. I have no pressure, other than Hubby telling me I have til he is 40 to get pregnant (that's in July 2010) ...... In the meantime, I try to focus on losing one pound at a time, having a healthy lifestyle and educating myself on what's best for me.

[Mo]

Hello M,

Thank you for your post! I am finding that I have to relocate the introduction posts to the main page so I am going to do that now. It will be under a new post called "Introduction: M".

I will need to permanently change this original format because the only way for the members to see your newest post is either to have checked "e-mail for replies" or come to the board daily to see if there are new ones. So, wanted to let you know that it will be copied to that location and replied to there.

Mo

[honourable]

hello! please help me!!!!
my name is hadi and i live in iran. about 1 month before i had a a blood test which showed that i have hashimoto . my tsh was more than 5 in 5 different tests(tsh varying from 5 to 9) and my tpo was 750 and 1130 in two different test. my t3 and t4 was normal. as i see now i have had hashimoto symptoms for many years but i did not no what was the problem. my doctor adviced me to use levothyroxin but because of a reson which i describe i should not use it now:
 I am 26 years old and i realy have problem with working and I should show to military service organization that I have hashimoto But my problem is that my tsh changes(between 5 to 9) and at sometimes it becomes near the upper level and sometimes in the normal range which shows I have no problem about thyroid . I need to keep it high as much as possible about 2 month in which I have to do my tests to show my hypothyroid . what should I do to keep tsh high enough for about 2 month? Please help me and let me become released from this hell.

[Mo]

Hello Hadi,

I have a question for you.

Why would it not be enough to prove Hashimoto's Disease which is not diagnosed by the TSH but the antibody tests?

If you have been diagnosed with Hashimoto's Disease, you have it no matter what your TSH reads from month to month. It does fluctuate. I'm not sure what you need for the military but perhaps you need to educate them on what Hashimoto's is. According to what you indicated, your Hashimoto's test results show positive both times. (antibody tests)

My home page has a video on what Hashimoto's is. Perhaps you can check that out which might help you describe to the authorities why your TSH is not the test to watch when it comes to Hashimoto's Disease. Now, hypothyroidism is most times a precursor to Hashimoto's Disease but with thyroid supplementation it often responds by moving into the normal range with the right dosage but this does not treat the autoimmune part of the condition.

Unfortunately, "normal" is not always an agreed upon number. When I was diagnosed, "normal" was between 5 and 8 I believe. Now some doctors like to see it under 3 and even more are seeing that lower is better for symptom management. It is much more about how you feel and less about the number. That is the most discouraging part of having the symptoms - doctors tend to dismiss them if the numbers are where they want them to be.

Perhaps you can ask for a second opinion and find a doctor who understands autoimmune disease?

I hope something I've said here can help. Let us know how things go.

Mo

[honourable]

hello!
thanks for your reply.
first of all i shoul answer your quwstion: i am not sure hashimoto would be enough for them to exempt me from military service but surly overt hypothyroid would be enough.(and maybe subclinical hypothyroidism)
my doctor said to me that i have hypothyroidism which its type is hashimoto thyroidities. as i know in hypothyroidism, tsh rises but as you said in hashimoto the number of tsh is not important and only tpo indicates hashimoto. did i understand right? so is it possible that for someone who has hashomoto, tsh would be normal ? how about hypothyroidism? some main short questions:
1-what is the reason of tsh fluctuation in hashimoto? is there any way to make it fix (about more than 8 or 9)? how?
2-everyone who has hashimoto, has of hypothyroidism too?
3- what would happen if i do not use levo thyroxin? whould my tsh rise or not?
4- at what time tsh fluctuation in hashimoto would finish and become steady?
5-at what time and condition, hashimoto would reach to hypothyroidism?
6-what is the difference between subclinical hypothyroidism and hashimoto?
7- is it wise for me not to use levo thyroxin to become overt hytpothyroid and can exempt from military service or it would be dangerous for my health?
as i investigated, the doctors in the military service only look at tsh to see if someone is hypo or hyper. so if my tsh will not be high enough they willl not consider me as a hypothyroid patient and i have to go to military service for about 2 years which is too much hard for me because of my disease. realy they do not look at tpo . i do not know. maybe hashimoto can not exempt me from military service!!!

[Mo]

Hello Honourable,

I'll do my best to answer your questions but PLEASE understand I am not a doctor and this forum is more for support than the technical side of Hashimoto's, however, as a patient, I can tell you what has worked or not worked for "me" and things I've heard from other sufferers along the way. That means that all the responses are coming from experience, not medical advice. Okay? Here it goes - I will answer your questions as I can after each one: (I am copying and pasting your e-mail below)

hello!
thanks for your reply.
first of all i shoul answer yourquwstion: i am not sure hashimoto would be enough for them to exempt mefrom military service but surly overt hypothyroid would be enough.(andmaybe subclinical hypothyroidism) That is sad because Hashimoto's is so far the most uncontrollable of the two. I am sad to hear it is not seen as a disease which can cause serious symptoms that can affect your service to the military.
my doctor said to me that i havehypothyroidism which its type is hashimoto thyroidities. People may have Hashimoto's without being hypothyroid - it is just that the of the two, hypothyroidism is the only one that most doctors know how to treat. as i know inhypothyroidism, tsh rises but as you said in hashimoto the number oftsh is not important and only tpo indicates hashimoto. It's not that it's not important, it is just that it is not defined by your TSH - it is defined by your elevated thyroid antibodies. It's important if you develope Hypothyroidism as a result of Hashimoto's Disease. One is treatable and one isn't (so far in traditional medicine) did i understandright? so is it possible that for someone who has hashomoto, tsh wouldbe normal ? Yes, is it common to have Hashimoto's in the beginning stages without an abnormal TSH. how about hypothyroidism? Doctors don't all agree on what is "normal" for the TSH. Here's some help on that... http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm some main short questions:
1-what is the reason of tsh fluctuation in hashimoto? is there any way to make it fix (about more than 8 or 9)? how? Wish I could answer this - the fluctuation is very common which is why the medication needs to be adjusted for each person differently. I find mine to be worse in the spring (maybe showing some allergy connection?) and less in the fall while taking the same dosage of thyroid supplements.
2-everyone who has hashimoto, has of hypothyroidism too? Honestly, I don't know that answer well enough - I know that at the beginning of the disease (Hashi's), many are not hypothyroid and also many tend to become hyperthyroid before they become hypothyroid. There seems to be a "last gasp" of the thyroid to work before it begins to give itself over to the antibody invasion. But this is not fully understood.
3- what would happen if i do not use levo thyroxin? whould my tsh rise or not? Probably - if it was higher and then your meds brought it down, it seems to me it would get higher again but I wouldn't recommend going off of your meds without a medical doctor's help.
4- at what time tsh fluctuation in hashimoto would finish and become steady? NOt sure what you're asking.
5-at what time and condition, hashimoto would reach to hypothyroidism? THis is a highly individual disease - there is no time period I am aware of that you can predict hypothyroid from a Hashimoto's diagnosis.
6-what is the difference between subclinical hypothyroidism and hashimoto? As far as I am aware, subclinical hypothyroidism is a period of time at which you are being watched to see if you need treatment for hypothryoidism (TSH numbers and possibly T4 numbers). Hashimoto's is usually definitely diagnosed with the presence of antibodies. See http://thyroid.about.com/cs/basics_starthere/a/antibody.htm which might help you sift through this issue.
7-is it wise for me not to use levo thyroxin to become overt hytpothyroidand can exempt from military service or it would be dangerous for myhealth? I can't answer this question unfortunately.. however, I can tell you I was once off of my medication for other reasons and my TSH went up to 98!!!! (and I was remarkably still alive) However, I don't recommend it. It took me a year to get back down to a safe level - and I'm still not there yet.
as i investigated, the doctors in the military service onlylook at tsh to see if someone is hypo or hyper. so if my tsh will notbe high enough they willl not consider me as a hypothyroid patient andi have to go to military service for about 2 years which is too muchhard for me because of my disease. realy they do not look at tpo . i donot know. maybe hashimoto can not exempt me from military service!!!  Please read the last link I gave you above - you might be able to contact the doctor named on that page or find another doctor that can help you with this issue. It is sad that you cannot get heard on this. I am sorry. I hope you can find some help soon. I hope this has helped a bit.

Hang in there. Mo

[honourable]

hello Mo
your information could help me a lot. thank you very much. I will never forget your kindness.

[Mo]

Hello Honourable,

I am glad it might have helped. Please come back when you are doing better (or before if you need to) and let us know how you are doing.

Sending good thoughts your way.

Mo

[michelentim]

Happy to find this site
My name is Michele.  I am 46 years old.  Last June I went to my regular general doctor and she ran blood tests for me and found my TSH level was 5.5.  Called me and said I had Hypo.  Me not knowing anything I put full trust in her since I thought she must know what she was doing.  My sister and Father are Hypo.  She put me on .88 of Synthroid.  I figured since my sister and father take it I would be ok too.  Not my case.
30 days later I went back to the doctor for more blood work to see if the drug was working.  My levels read 0.587.
No t3 or t4 or antibodies test ever run.  I was not informed enough to know about those tests.  In the meantime come August I started having anxiety issues as well as rapid heart rate.  I went back and forth to the doctor.  She ran and EKG and did a chest x-ray.  All were normal just a faster than normal heart rate.  Also between August and November my blood pressure started to go hay wire.  I was pretty scared.  So the doctor put me on blood pressure meds.  Finally my blood pressure went down to a more normal level.  In November my anxiety got so bad that I FINALLY started to do my own research.  Looked like to me I was having side effects to Synthroid.  Might be taking a dosage that was too high for me.  So I take my husband this time and go back to the doctor in December.  I demanded she reduce my levels of Synthroid to see if that would make a difference.  She put me on .25.  Within a couple of weeks I started to feel better and thought everything was going to be better.  During this time though I started to make appointments with new doctors.  I made an appt. with a cardiologist.  Thank goodness for him.  My appt was set for X-Mas eve at 8:45am.  The day before I ended up in the ER with a Tachycardia.  The ER doctor was sure it was because of the Synthroid and told me to get off of it.   (I didn't know at the time I had Hashi's due to lack of proper testing).  Went to the cardio the next morning and he agreed also that it was the Synthroid and told me to stop taking it and that my TSH levels were never high enough to warrant this type of dosage.  So I felt better knowing that someone was paying attention to my problems.  I finally had that appt. with my new doctor.  He ran proper blood work and found that I had antibodies.  He ordered an ultrasound of the thyroid and of course I have a few small nodules and then I got scared.  I was referred to an endocronologist.  She confirmed Hashi's.  Panic set in!  OMG what was happening to me.  I am so scared.  She put me back on Synthroid but at the .25 dose. 
Had blood work done prior to starting the drug again and my TSH was about 3.3.  Probably within a more normal range since I had been on Synthroid previously. 
My last blood work done by my new doctor was a TSH of 4.151   FREE T3 of 2.7  FREE T4 of 0.95  This was done prior to my visit to the Endo.  So when my Endo did my TSH they called and said 3.3.  Hummm.  I would have thought it would be a higher number.
I go back to the endo again the middle of the month.  I have so many questions.  My cardio put me on Typrol XL to help with the rapid heart rate and palp's.  I really don't want to be on it but, he wants to keep me on it until my levels are normal and they don't raise my Synthroid levels.  He will take me off the drug after that to see what happens.  Ok let's play with my heart!  Scared to death here!
Thank you for listening to me
Michele
 

[Mo]

Hi Michele,

Welcome to the board and unfortunately to this disease. I have some good news for you... later this week I am hoping to send out to everyone who is a member of this site some groundbreaking information on this disease I just found through a traditional doctor who is finally spreading the word about the lack of attention the medical world gives to this disease. I'm just trying to formulate an e-mail and will send it as soon as I have that ready. Be watching for it in your e-mail and make sure my address is not blocked:

hashihope@gmail.com

I am sorry you had gone through all that. Check out my home page and all the information there about Hashimoto's and also check out "my story" page. You will find my journey similar to yours.

I am sure we will all find better answers as the medical community begins to catch wind of this frustrating disease and lack of adequate treatment.

You will be okay - there are ways to help your symptoms. Check out my first post on this board "How to live better with Hashimotos" which is on the top of this forum. Unfortunately, it is not an easy and fast road to health with this disease. It is so much more than "just take this pill for the rest of your life and eventually your thyroid will die". I think we have much more we can do than that and this is what this board is for. For us to help each other. I am hoping more people post so we can learn from each other.

If you would like to reply to this post, please start a new topic on the board. Thanks!

Hang in there...

Mo

[kinshealth]

HI I' Jada and I was diagnosed with Hashis about 2 years ago. I'm 27. My thyroid became enlarged at 4 months Postpartum and from there I was diagnosed Hypo/Hashis. I have switched to hyper now though. I'm currently taking herbs, and supplements,doing acupuncture and plan on cutting out gluten here shortly. I see a ND who is trying to help but I feel we are still not on the same page. All in all i'm not feeling much better and I'm getting very frustrated.

[Mo]

HI Jada,

It sounds like you are doing some good things to help yourself. It is so important to have a doctor who you trust. To me, that is most important. Perhaps you might try a different doctor? Have you considered getting the book I recommended recently? In fact, you are a new member so you probably didn't get my e-mail. I will post the book name on this forum at the top of the main page. I really recommend the book.

Not only does he help you classify your type of Hashimoto's (meaning where your "root" issues might be) but he lists different tests to help you and your doctor pinpoint the best treatment.

I will go post that right now.

Feel better and come back often to share your results and talk to others that understand.

Take care,

Mo

[Betsy]

1. How long have you had Hashimotos?  Not sure - it was diagnosed in 2005, but I may have had it for as long as 30+ years.

2. What are you doing for treatment?  I'm on Armour, and right now I'm in a wellness program run by a group of chiropractors who use the protocols of Dr. Kharrazian, who wrote "Why Do I Still Have Thyroid Symptoms".

3. Are you satisfied with the progress or do you feel you need to find a better combination of treatment?  Progress? Has there been progess?

4. Have you tried any successful diets (whether for losing weight or controlling symptoms)  Before I changed my diet for the wellness program I was eating lowish carb, higher fat in January and losing weight at at pretty nice pace. Since I stopped that, nothing much is happening. The only other time I lost weight in the last 5 years was when I was on drugs for insulin resistance. When I got off them most of the weight came back.

5. Tell us anything else about yourself - age, location, etc. that you would like to share.  I'm 58, live in Texas with my husband and a dog. We each have kids and grandkids from previous marriages, but none living with us.
 
Weird things from my medical history: all my hair fell out when my son was about a year old back in 1973. It grew back once, then fell out again a few years later. Now, over 30 years later, it's growing back a bit. Thyroid related? Maybe.
 
I had mono around Xmas 1990. That may have contributed to health issues including a sleep disorder.
 
I was having trouble losing weight and feeling fatigued around the end of 2004. I learned a bit about thyroid issues on a forum and decided to see if I could get a diagnosis of hypo and some Armour and then life would be great, right? The first two doctors I saw wanted to prescribe anti-depressants. The third found a nodule, which they thought might be cancer, so in June I had half my thyroid removed. During the surgery they said it wasn't cancer, so they sewed me up and sent me home.
 
Three weeks later I went for a follow-up with the surgeon who informed me that I had both cancer and Hashi's. I had the rest of the thyroid removed in August, then RAI (radioactive iodine cancer treatment) in October.
 
I've seen umpteen doctors since then, trying to find a decent one who would prescribe Armour, not cost an arm and a leg and be alert to other issues, too. I think I've finally found one. Along the way I was diagnosed with adrenal insuffiency and excessive daytime sleepiness and alpha wave intrution, which is a sleep problem possibly associated with chronic fatigue syndrome.
 
I've had antibodies tested a couple of times and only once have they been out of range, and barely at that. No one has ever addressed the Hashi's specifically as far as I know.
 
I'm still tired, although less so than 5 years ago. Any bit of stress makes me feel like a limp dishrag, but my cotisol saliva tests look wonderful, so I'm cured of that (a little sarcasm here, I think). Hopefully the new program and supplements will fix all that and dampen the inflammation. I find it hard to get excited, though, as I've been waiting for the magic cure for a long time.
 
Nice to have found a group of people who knows what I'm talking about!

[Mo]

Wow Betsy,

That is QUITE a journey you have been on.

Sorry to hear of so many years of trials. Do you have ANY amount of your thyroid left? If not, I would assume that your Hashi tests would not show as an issue since there is no tissue to destroy? I believe the Nourishing Traditions food preparations will help your chronic fatigue and I have an idea for your sleep issues but I will be posting that on a new topic area within the next week so check back on that. I want to be SURE I am suggesting a legitimate option so I am trying it out a full 3 weeks before confirming it's value to me first.

Hope to see you more between here and our Nourishing Traditions class.

Take care,

Mo

[pjpants]

Hi,
 
My name is Lindsey, I am 30 years old.  I had a baby girl 16 months ago.  Prior to becoming pregnant, probably sometime in 2002, my doctor noticed my thyroid looked enlarged.  He tested it and sent me off to an ultrasound to look at some small nodules.  Told me my TSH level was around 300, but that is only "borderline, so we'll keep watching it" and the nodules are not concerning.  Throughout the years, it remained what traditional doctors call "borderline"  I'm learning that 400 is considered hypothyoid but that the jury is out on what should actually be considered hypo. 
 
After my daughter was born, I noticed I kept feeling worse.  I felt ok while breatfeeding, but when I stopped, I felt worse and worse.  Tired (which I attributed to being a new Mom), grey hairs popping out all over my head (getting older???), my feet and legs ache when I get out of bed, and gaining weight.   One day, I noticed a goiter sticking out the front of my neck in the mirror at the gym.  I went in for a physical Dec 09.  My nodules had increased considerably and TSH is 379 so my Dr sent me off for a needle biopsy.  It was the most terrifying event for me because exactly one year prior, my best friend had her thyroid nodules tested, and they were cancerous.  She's been battling thyoid cancer for the past year. 
 
My biopys turned out to be benign, I celebrated.  Then moving forward to try to treat my "borderline" hashimotos.  My doctor said we really didn't need to treat, but since I reported feeling tired and because I've gained over 20 lbs in the last 5 years, he gave me Synthroid.  Almost like I didn't need it!  After a week on this medication, I had to stop.  I don't know why, but I felt like an absolute psycho on that medication.  I was extremely depressed, almost suicidal and my thoughts were all over the place.
 
So...here I am...My Dr told me to stop taking the meds and do NOTHING!  He left me out to dry.  I'm looking for a new doctor.  I just found this website tonight and I'm so excited.  I've been pounding gallons of coffee each morning because I'm so tired, and I load my coffee up with sugar free sweetners because I'm frustrated with my weight gain!!  WOW, I will be stopping all that tomorrow for sure.  Keeping on with my healthy diet and my exercise and hoping to find a doctor that cares to treat me.