hashimoto disease

[Applecore]

Please help.  I have posted several times on several questions and haven't gotten an answer.  I just recently was diagnosed with hashimoto disease.  I have probably had this for a lot of years just was never told the name.  It really upsets me as will I ever feel normal again.  I know many of you have this and how do you feel.  Will I ever feel energetic and do you go back and forth with hyper and hypo symptoms.  This whole thing is discouraging.  I am sorry to be so whinny.  I am feeling so down today and weak and my whole body feels that way.  I feel like I weigh tons.  I have headaches, not much, I can't remember anything,  My appetite is out of control.  I am trying to handle that and am not gaining at such a fast pace.  Please can anybody give me any encouragement about this disease.  I have nodules on my thyroid that are benign but producing.  I had an RAI 2 years ago.  Something good has got to come out of this whole thing.   Linda desperate in Md.

[jsbucket]

Hi I just wanted to say that I was diagnosed with hashimotos. I was miserable. Extreme tiredness. Extreme pain in joints. Throat hurt. Brittle hair. Hair felt like sandpaper. Brain out of wack thoughts out of wack. Major panic attacks. I was put on levothyroxine and then Tirosint. Tirosint is a newer gel cap that is basically supposed to be a pure form of levothyroxine. Anyway I was miserable. My family was miserable. All the doctors wanted to do was up my Tirosint dosage. I started having bad reactions to the medication. Doctors kept wanting to just up my dosage and said that the reactions I was having was not because of the medicine even though the medicine states on its side effects the serious reactions you can have. I was miserable. I read my bible and started praying and asking Jesus what I should do. The doctors tell you you have to take the medicine. I decided to quit the medicine and I started taking iodine and brazil nuts for selenium and Camu Camu powder for vitamin C and Carlsons Fish oil. The pain in my joints where I used to feel like I was 100 years old would be in so much pain went away almost immediately after starting iodine. I dont have anxiety like I used to. I am not as tired. My hair is nice and silky. I feel way better than I ever did on any medication. Praise Jesus!! I just know how miserable it it is and frustrating it is to feel like you will never feel better and you just cant take it anymore. I dont know if this will help anyone. I thought I would post it anyway just in case it might

[ourmarnie]

Go girl x

[Lyndahoney]

After 45 years of suffering and taking synthroid I have Just been diagnosed with hashi's. The really BIG thing no one tells you is... you MUST be gluten FREE if you have hashi's. This and this alone has changed my bad days into very few!!! It is very hard to be gluten free but there is lots of stuff out there now to eat Marked clearly GLUTEN FREE.
After one week of a gluten free diet my stomach pain left, along with IBS constipation/loose bowels, headaches, muscle pain and sleeplessness. TRY IT it will make a difference for you I am sure.

[kapitichic]

i have investigated the mercury removal and it will cost me $10,000 NZ to have them removed and crowns put on top of the teeth to protect them. its a bit out of my price range unfortunately - but i h ave been talking to some other people - Cancer survivors and they areonto an aAlkaline water maker - and have removed all grains from their diets and use colloidal silver and minerals as apart of their diet regime - they no longer have cancers... and  are younger healthier than ever... so am looking at this as an option to try as well - the body has an innate ability to fix itself - we jsut eat the wrong foods and are too acidic so the body fails and falls apart.... will keep you all informed ...

[vleah]

Hi.  I was diagnosed with hypothyroidism 18 months ago and a while after that, hashimotos .  I have blood tests every 3 months or so and the levels are in the acceptable ranges, although last christmas I was feeling exhausted, putting on a little bit of weight, hair thinning and mood swings so I increased my dose by half a tablet.  It improved my symptoms but I got paranoid because I thought I was experiencing hyper symptoms so I decreased the dose back to what the doctor prescribed.  I was wondering if anyone knows whether increasing and then decreasing the medication levels is harmful.   I was also wondering whether the T3 and T4 levels fluctuate even if the medication stays the same.  

Thanks

[revins]

How did it go with the mercury fillings removal??  I've been wondering about that myself!
God Bless!

[kapitichic]

ok i went the GP who specialises in hormone diseases and she has me on Thyroid (from a pig) it contains T3 and T4 not just the T4 - that the synthetic one has... i have been on it 4 days as of now. only 60mg and am to increase in 10days time by 30mg (inc every 10 days)  until i find a difference in my symptoms.

she also wants me to remove all my amalgam fillings (mercury) as she believes that this is the root cause of the autoimmune issue.....

i will keep u informed

[revins]

There is hope for losing weight and feeling better while still having Hashimoto's disease.  I was at the end of my rope with most of the docs, mainly my old Primary care and my Cardiologist.

I had these funky chest flutters, so the Cardio (even though everything checked out fine on those expensive stress tests and such) decided to slap me on Toprol.  Wrong move.  I woke up in hysterics from horrible black nightmares, only to have the stupid Toprol kick in and cause me to come crashing down in my BP and heart rate.  I finally went to his office un-announced and said "enough is enough".  He pretty well "ordered me" to stay on it and politely told him "Last time I checked my bankbook, You were working FOR ME... not the other way around, and I will NOT take another one of these pills because obviously I don't NEED them and you've missed something".  So he says "Maybe it's gastro related" and gives me an antacid script.

Sure enough, a gastro doc found that I had gastritis and silent reflux and because of my body's anatomy (my sternum and whole rib cage is twisted slightly) every time the reflux happened, it "bumped my heart a bit, causing PVC's to happen.  He said my gastritis wasn't bad enough to merit the antacid.  He felt that the Thyroid was the whole issue to my problems.  Evidently it can make stress worse (stress causes acid production), it can cause sleepless nights (night is when our bodies repair) which can cause more stress.  So he put me on 1/2 of a klonopin twice a day (a peanut dose he calls it) and 1 Lunesta at night to help me sleep good.  It's made a world of difference.

The Primary Care doc, Endo, and Cardio all agreed to my talking to a Nutritional Doctor and implementing a weekly b12 shot to help with my low energy level, and then later added CoQ10 (150mg) for the heart support, and 3 amino acids called lipotropics to help assist in the breaking down and moving out of fats and toxins.  They put me on a 1200-1400 calorie plan, instructed me to exercise every day (preferably 20-30 minutes of sustained cardio), no caffeine or cinnamon (it triggers acid in the stomach), and to drink at least 64 ounces of water a day.  I honestly feel wonderful!  We just recently were able to aspirate and remove a huge Thyroid cyst (about the end of November) and it hasn't come back.  My Thyroid levels (except for the Antibodies) are back to normal and my weight is down over 26 pounds.  Things are definitely looking up!  And a very embarrassed (and enlightened) Cardiologist is now saying that he should have listened more closely.  At least he's a better doctor out of all this as well!

Best wishes to those of you that are walking this road... there IS a light at the end of the tunnel.   There are a lot of great docs out there... you just have to find them.

[kapitichic]

i forgot to say i have also lost 10kg's doing the sureslim program - i guess they have it worldwide.... real food- but you need to weigh everything... - lost 15 but gained just under 5 over xmas and new year from oct  - now... shame..... ah well

[kapitichic]

i was diagnosed with hashimoto's disease sometime last year. i have decided not to go the Synthetic route and am trying to do it via diet and health supplements. Next week i am going to see a MD who specialises in Thyroid issues and natural health... iwill keep you all posted... I now know after reading this blog that my headaches which i never used to get are getting more and more common. also i have always suffered from low back pain but i think ornow wonder how much is caused byt he hashimotos.  i wil lalso ask to be checked for Gluten intolerance thanks w=for whoever picked that one up... i guess my main issues are the fatigue - man im so tired ... but i have joined a gym and go kayaking often ..... its great to find this site ... will try and keep you all posted with any info i find out  and hope you all will too...thanks a bunch and good luck out there ladies

[Applecore]

Yes it is possible to lose weight with hashimoto.  I believe when your numbers are right you will stop gaining and level off.  Then watch what you eat.  It may be a little harder but you can do it.  I have been diagnosed with celiac disease and have lost 7 lbs. due to change of diet.  I don't really eat as much as I used to eat - I think depression has something to do with it or it could be my thyroid is finally in the normal range.  You might want to look into being tested for celiac whichis gluton intolerance and may be affecting your whole family.  You can check it by a blood test.  If you have any stomach pain or acid reflux or some people don't have any symtoms.  I certainly will be praying for your and your children that you find the right doctor and treatment.  God still heals also.    love linda

[beccamomof2]

Hello I was told almost a year ago that I had hashimoto and to just pretty much give up because it had gone so long. What is it with some of the doctors in the world? Anyway I was having such bad pains all over, my brain was just shot (had to drop out of college due to memory loss) and was falling asleep every time I would sit down. Being a young mother of 2 very active girls I was not going to take the give up and die route. Yes there for the first few months I was wondering why it took so long to find out what was wrong with me. Now my heart is effected and the weight I have gained is just beyond belief.  But the very worst part is I just found out today that my 7yo little girl also has hashi and that I also need to have my 4yo tested. I have changed my diet and now its going to be a family fight that we aren't going to give up on. Has anyone been able to drop any weight with  this?? I have been told its not going to happen but yet again I'm also supposed to go live in a hole till death comes. Even if its only 10-20 lbs there has to be a way to drop the weight that is putting more stress on the system, right?

[Applecore]

I couldn't believe it when I saw this had popped up again.  I have been having major problems with negative thoughts today.  They seem to come from the pit of my stomach and I have been fighting them all day.  I know they are a lie.  They tell me that I am not going to make it.  I know I will.  I am taking natural stuff for depression and that is what I want to do and everyday I have a battle with something.  That is right now.  I don't know exactly what is causing this as I was a lot more stabile that I am right now.  I keep on pushing through and taking my meds as I am supposed to and taking the lorazapam like the doctor said to and also breathing excercises and trying to think as positive as possible.  I started making jewelry today.  I make my first two pair of earring and them turned out pretty good.  Have you ever had thoughts that really tried to bring you down and lie and tell you stuff that you know isn't true.  I am a Christian and I know that the liar is a liar from the beginning but it is hard to open up a little and cry and then it seem I have to really fight.  I am going for counselling and that probably is causing some of this because it is hard at times and this is one of the times.  I believe this opened up for a reason so I am hoping to get some positive responses to this.  I am taking l-5htp and SAMe for the depression.  It is hard to tell how much it helps.  I am really angry at feeling like this and look forward to it going.   Thank you all so much for your help.   Love and prayers.   linda

[mnnj]

Hi,
I was wondering if anyone knows anything about having Hashimoto's disease (hypothyroidism) and pregnancy.  My husband and I both have it and we want to get pregant in the late summer/fall.  I have been researching on the internet and found many sites saying we will have infertility issues, miscarraiges, birth defects, complicated pregnacy, etc. etc.  I have been crying all day.  Is there anyone on here who has any experience/advice.  
Thanks,

Melissa

[gajuca]

Hi I just stumbeld accross this forum, by searching for any information on the hashimoto disease, two weeks ago my daughter (6 years tommorrow) has been diagnosed with this disease and now I am looking for information what to do.  A year ago I had a suspicion that she might have something wrong with her thyroids, went to the doctors, but they thought I am a paranoid mother, my daughter cant sleep at night and she has got a bone structure of a 3 year old, cant concentrate, is underweight and I would say her whole development is backwards, it has taken me more than 5 years now to find out what wrong, and I still have no idea what I am up against.......the problem that I have got is that the bloodlevel is still allright, the ultrasound is fine ......but I know that she has got the disease....her nails are full of fungus, she has got a wheat gluten intolerance and all the other symptoms are there.......I really want to help her and even try to safe her from taken long life medication....yoga...herbs...diat what does help, anybody any idea
I would really appreciate any comment
thank you

helpless mother

[jelw]

Hello, I am new to the forum but I have had hypothyroidism for over 30 years and diagnosed w/ Hashimoto's for 20.  I have good days, bad days, good years, bad years.
One of the consistent issues is taking meds at the same time in the same way every day.  It makes such a huge difference.  The hair, skin, nails all improve, as well as the more important, brain fuzzies, depression and anxiety.  
An important factor to remember is that there is NO perfect numbers in the diagnosis or treatment of this disease.  When you are tested for your TSH, T3 and T4 levels the Docs are looking for "acceptable" ranges.  What is right for your body may be entirely different for another person of the same basic build.  They have recently broadened the threshold of "acceptable" levels because so many people were undiagnosed - flying just under the radar.  This becomes super important in your management of your own disease. The doc's check your labs and want to prescribe according to their standard.  Once you find a level that is working for you (not perfect life the way we remember but working) make a note of it.  If they put you up or down a level and you don't function as well don't assume they know best and stick with their dosage, tell them you did better on xyz dosage.  Be clear here, I am not suggesting ever taking yourself off your meds.  That is a nightmare waiting to happen.
One of my major problems over the years with this disease was the feeling of having no control.  Take your control back.  Manage your diet, manage your meds, and manage your support network.

Diet:  Get checked for Celiac disease as Applecore suggested to Shazza97. Cutting the wheat from my diet has been a major help! btw I have used very little splenda and never went near the other fake sugars.

Meds: as jd2 pointed out, adjust to what works for you not the lab report.

Support Network: Friendly but firm is my motto.  Tell friends and family if they are undermining you. Show them printouts of the medical data. They understand far less then we do. There are some good people and professionals out there but most of us have had to suffer the fools that tell us it is all in our minds.  Don't accept that from anyone!  If it helps, get mad not depressed. Getting mad can lead to action, which can lead to understanding. Depression is so very draining and dangerous.  I believe we had all had serious bouts with depression. Anything we can do to fight it and to help each other is so important.  
I am so happy to have found this forum.  Thank you all.

[bmtaylor]

I just found out that I have a very large thyroid with a goiter with 5 nodules on my thyroid.  I have sever mid to low back pain and I am always tired.  I have been getting b12 shots thinking it was that.  I gave a bunch of blood and go back to my Endo on Tues.  She suspects but doesn't know for sure yet that I have Hashimotos disease.  The doctor told me the options I had were to get needle biops... or to remove my thyroid all together.  I'm leaning towards the latter.  Once the thyroid is removed, does life get better?  I just found this out today so excuse my ignorance.  I know I would have to take a pill for the rest of my life.  Is that what everybody is talking about..the dosage of that particular pill?  Is there anyone on here that had Hashimotos disease and had their thyroid totally removed?  I would love to talk to you.

Thank you!

Bridget

[jd2]

hi!
i have hashimotos too, and it took me a year of adjusting my dosage of synthroid to feel close to normal.
most days now i have enough energy, and feel pretty good most of the time. (and no more suicidal thoughts - shazza97).

when i was diagnosed, my first doctor started me on 50mcg. this turned out to be about 4 times too much for me. although i had all the hyper symptoms, she wouldnt let me reduce my dose. i did it anyway because i was so sick and just couldnt keep taking it.

after seeing a few different doctors, i now have a great GP, who has thyroid herself so understands. she lets me adjust my dosage myself (well i guess she cant really stop me), although i only adjust it by 3 or 6mcg at a time (yes i cut those tiny tiny tablets up), depending on whether i feel like i have hypo or hyper symptoms. then i wait 2 weeks to see what happens. my doc also works with me by testing my tsh every now and then to see what the dosage is doing to me. im very sensitive to the medication too - i take 12.5mcg 5 days, and 15.5mcg 2 days. some doctors told me this was so small that i didnt need it at all (which was totally wrong - if i dont take it i go hypo. when diagnosed and on no meds tsh = 6 and was so depressed i wanted to kill myself). but my new endo tested my tsh and t4 when i felt hypo on less than 12.5mcg, and agreed that my t4 was low and i needed a little bit more synthroid.

anyways, what i am trying to say is that, unless i am on exactly the right dosage for me, i feel terrible, even though my tsh might be in the normal range. (and it is only a difference of about 6mcg/week for me to feel good or bad).
my mum is similar, although she is on a higher dosage and gets affected by a difference of about 12.5mcg.

Linda, when you find the right dosage, you will feel better. I see no reason why all of us thyroid patients cant find the exact right dosage for us to feel like we used to! (or even better!)  we just need some doctors to help us (although there are some great docs out there), instead of just saying take this dose and thats it.

[levo885]

I just recently went to the doctor for my annual physical, and my doctor did the swallow test and found a nodule.  I went in for an ultrasound and it found several nodules.  After I found out that I had nodules, I had to go to a endocrinologist and she diagnosed me with having Hashimoto's disease.  I recently went in for a biopsy, and I found out that I have several nodules and one is particularly huge and she told me that it was getting calcifications and there was blood going to it.  She also told me that I had a nodular goiter, and even though it isn't cancer I probably need to go have a lobectomy to get rid of the biggest nodule.  I was asked if I have felt any different and I told them no.  I really didn't know that I was sick because I keep a very active life and I have three children so I don't have time to think about being sick.  I am very worried about having cancer, but I know with the proper treatment I will be okay.

[Downinfla]

I was diagnosed with Hashimoto's Disease and Grave's Disease in 1992.  It was really quick, my thyroid enlarged (Goiter) down in my chest cavity and was pinching my esophagus.  I went into the emergency room and by the next day only had a piece of my thyroid left.  I have been taking Levoxyl since then and have not had any more problems, as long as I take my medicine.  Prior to all this I had a lot of the same symptoms as described above.  From the time I was a child I had an adams apple, now its gone.  Look for things like caluses (hands & feet), hair loss, dry skin, irritableness.  I have never used splenda or any other type of sugar substitute, never was depressed or experienced any type of mental problems from it, actually I was and still am living a very active life.  So keep your chin up, things will get better once they figure out the mg's you need to get back to normal.  I get tested once a year and have not had a change in my meds for approx. 10 years.  Good luck !!  

[Applecore]

let us know how you make out.  It is a process as I am learning.  The fear is the worse thing and that is one reason why we can help each other to elivate the fear.  Also the anxiety meds help and the Lord.   with love and lots of hope   Linda

[shazza97]

Gosh! Thanks so much... I've never felt so eager to see a doctor! I hope your anx/ dep subsides soon, you seem to be doing pretty excellently so far!  since your first posting,, what an inspiritation!
Shaz

[Applecore]

Yes all of this will get better.  My eye pain is gone.  My energy is returning.  My weight is going down.  The thyroid takes time to change - it is not quick that is why we are all here for each other to encourage each other as we have to wait it out.  The hair and skin will come back normal.  Mine has.  I was scared actually terrified is the word.  I am taking lorazapam which helps me on a daily basis to handle the fear until I get further along with my counseling and the thyroid get normal and stays there.  It got to normal once and then jumped back up to 5.6.  I am going for blood test on monday and will know more what is going on.  I am very sensitive to thyroid hormone so am on low dose 37.5 except on Sunday 50 .  This is the second week I have taken it.  I believe the thyroid issue has thrown me back into some depression and anxiety issues that were not resolved early in my live and I am having to face them now.  That is basically why I am taking the anxiety meds. now.  They really help me to feel basically normal.  I think the suicidal feels come with not having any hope and there is plenty of hope out there.  We will give you hope so continue to communicate with us as we have ALL been there , some still are and some are on their way out and some are out.  I am also diagnosed with celiac (gluten intolerant) and am finding all the stuff they are giving me supplements and not eating gluten also making me feel better.  Have you been tested for celiac.  It can cause thyroid problems.  It is a simple blood test.  Also I am having my adrenal glands checked this coming week.  Don't give up hope.  The endo's don't always say symp;toms are part of this but they certainly are as so many on here will tell you.   your are on my prayer list.  keep in touch.  linda

[shazza97]

Reading this page has made me cry.. I have Hashimoto's and i think my elder son has Graves.
I am still awaiting teatment for this condition and over the christmas period was very close to doing somthing silly, i'm sick of this!! I'm losing my familly! because of this desease i am not the mum/wife i used to be.. i had a wondeful life until this thing ruined everything. (My family are having trouble understanding my tiredness) The physical differences and disabilities which come with this disease is so damaging, Why does it take so long to diagnose??
My doctors were so quick off the mark to blame everday stresses and work that it took a while for me to be sent for a bloodtest which detected antibodies,it was 6 months later that i got to see the endo consultant who then wanted me to have a radioactive scan which revealed nodules and enlargement of my thyroid, another 3 monthes to re see the endo who then sent me for ultrasound taking another 3 months for that appointment. ultrasound has revealed Hashimotos now waiting to see endo consultant in Feb. Im scared,, will my hair/skin return to normal ?? Will my suicidal feelings dissapear when i get some treatment? will my shoulder pain go? will i feel warm again? will my eye pain go?.will my energy return? I have found your post very reassuring.. I have neverwritten to a forum before so am very new to this..many kind regardards Shazza97