Introduction...Hashimotos (unmedicated)

Just1forMe

Hi everyone! I've been lurking around this discussion forum for a while so I thought I'd introduce myself
My name is Lisa and I believe I have Hashimoto's. My mother was diagnosed with Hashimoto's about 30 years ago & both of my sisters were diagnosed as well...one just recently and is now on meds and the other a couple years ago and she just had her thyroid removed last week. I have no health insurance but have had 2 basic thyroid tests (a year apart) at health fairs with one at the very bottom of the normal range, one at the very high end of the normal range. I have been reading about Hashi's for years and am very familiar with StoptheThyroidMadness.com, etc.
I have lost 72 lbs, but it has taken me almost 4 years and I am extremely rigid with my diet & exercise 7 days per week 1-2 hours per day. In the last year, I have only been able to lose just about 10 lbs.

My symptoms:
• Chronic low blood pressure & regular low body temp (96.6-97)
• Always freezing, especially hands and feet
• Heart palpitations periodically
• NO sex drive
• Complete brain fog...driving my husband& kids crazy because they tell me things several times a day that I fail to "hear" (read: have absolutely no recollection of it)
• I've been taking over the counter mild sleep aids for 3+ years to fall asleep & keep from frequent waking
• Fatigue
• Lack of any appetite except for a couple days before my period
• Hair loss
• Headaches (frequent) and dizzy spells (not frequent)

We have been trying to get to a point where we can swing health insurance (we are self-employed) and will probably get it by
this summer. I have been avoiding being "officially" diagnosed so that I am not saddled with the added cost of a pre-existing condition. Honestly, the most aggravating thing to deal with in all this has been the lack of ability to lose weight no matter what I try. I get my period about every 24 days and start to gain weight about 3 days before and during (usually 3-5 lbs) and when it is over, I literally have to lose it as if it were fat. Sometimes I can lose the last months gain by the time the next one is getting ready to start...if I am lucky. I've tried lowering my calories, raising my calories, raising protein, lowering carbs, zig zagging, spike days...just about everything I can think of. If something works, it works for a week or so then stops working.
After reading a lot of the posts on here from those of you who are on medication, it seems like the medication rarely helps with
the weight loss issues. Has anyone had any success with better losses after being on medication?

I know I can't give up. The last time I did that, I gained 45 lbs in 6 mos while actually eating a lesser quantity of food, but not tracking or exercising. It is just almost unbearable to work as hard as I am trying to lose with very, very little success. I probably spend 4-6 hours per day logging, planning, preparing healthy food, exercising, etc. I still have 30-40 lbs left to lose and at this rate It will take me another 5-6 years. I do realize that I am not only doing this to lose weight but to be healthier in general, but a little reward for my effort once in a while would sure be nice!

If anyone has anything encouraging to say, I sure could use it about now!
Nice to "meet" you all...sorry my introduction is a major venting session!
Lisa (North Georgia)

Jessilee75

HI Lisa- I am a diagnosed Hashi for the past 5 years, though I believe I have had it much longer. Five years ago I had my second child and loast my baby weight in about 6 weeks. Then it was like a switch was suddenly turned off and the weight gain and other symptoms started to hit me hard. In 3 months I gained about 50 pounds. I was extremely tired, my hair was falling out, I had headaches every day, I felt like I was in a continuous "fog". Mentally I started feeling like I was going crazy in my mind. I went to the doctor and basically was told that everything was because I just had a baby and due to stress (stress was/is very high but that is another long story! . When I asked about doing a thyroid check, my doctor said he didn't think it was that because he did not "Feel" an enlarged thyroid. But I insisted and it cam back that my levels were WAY off. Jump forward to 5 yrs down the road, today I am on 112 mg levoxthrine (my gp just lowered my dose, but for 4 years it was 125) I dont have the rapid weight gain, though losing is very tough. Most days I dont feel like I am in a fog, but I am always tired. As I tell people, it is just different levels of tiredness. My hair has been falling out more lately (and don't get me started on how dry and gross it is now...lol) I usually have cold hands and feet, but weirdly get flushed in the face and chest/neck area just about every day. My skin has this weird breakout thing going on... no one ever seems to know what it is when I go to the docotor....guess I will have to live with looking like I have razor burn on my neck! I stopped seeing my endo..he was a jerk. My next step is to get an appt with the Mayo Clinic here in Arizona. I am tired of feeling like this and there has to be somehting better! This has not only affected me, but my family as well. I am so moody now and I know its because I dont feel good. (Yes, I have NO sex drive and this has been a very big issue between my husband and I) Over these last few years I have really started listening to my body and realizing that I have many more symptoms which I believe are a result of my Hashi's (though most docotrs either dont listen or agree with me) I have a horrible time sleeping or staying asleep. I just bought some Melatonin hoping this will help. My hands swell alot and my joints hurt. Sometimes when I walk, my joints feel like I am 80, not 36. My periods are horrible now, plus I bleed in between cycles. I lose so much blood that I get anemic during those times. I want to say congrats on the weight you have lost, it is a struggle. Hang in there and know that there are many of us out here who understand the daily struggles. .Whether or not you are "diagnosed" officially, you sound very similar to me. You are an inspiration to me...you keep going despite everything! (Yes we all have those bad days when we say why even bother!!! )

loulou0612

I am hypothyroid and my son has hashimotos, as I have been trying to loose weight and feeling unsuccessfull the Drs felt I may be insulin resistant...fast forward and a lot of research found out that Since Hashis is an auto immune problem and one of the main culprits is gluten....as I continued to do research I found the best eating program for Insulin resistance is following the primal/paleo diet....because in IR( a large percentageof Hypo patients are Insulin resistant) Your body converts carbs to Fat instead of breaking it down for energy... I have been following the Primal diet (so I can use dairy) for 7 days and I will have to say it is remarkable...I not only lost 4.3 lbs in a week, I am feeling better everyday....sleeping better, I am not as cold as usual and have more energy... anyway, Not that I think everyone should go primal but I wondered if gluten could be a culprit with you.

Bridget28152723

You def sound like you may have it. I was diagnosed with Hashi's in 2011 after having my 4th baby. I cant not lose weight! I lost only 10 lbs. in 7 months, now I should have lost more , because I just had a baby, and this is not my normal weight! I have no sex drive , and love to sleep in the morning when my baby sleeps. I am on LEVO 25 mg. but have only been on it since Nov. because at first my labs were showing I had an over active thyroid( no I didnt lose a lot of weight ) when I turned hypo my weight loss came to a hualt. I exercise 6 days a week, and try to burn 400-500 calories each day. I feel bad that you are doing all that hard work and not losing , you need to get labs and thye need to test for the antibodies. I lso figured it would take 5 years to lose my last 25 lb. !!! I hope not! BOTTOM LINE .....It is nearly impossible to lose weight if you are in hypo range , this doesnt go for someone who is regulated by their meds, My hypo is a little better since being on eds for 2 months but my TSH is still 5.8, so I wont lose probably until its under like 3.0?? I gained most of my unwanted weight at the end of my pregnancy( about 20 extra lbs) , Im talking 10 lb. a week sometimes so I must have had a problem then, Its so devastating to not be able to lose , for me anyway I never been "overweight" . hang in there , eat healthy like you are and hopefully you can find a good Doc, keep talking to us on here

Just1forMe

I was diagnosed with Hashi's in 2011 after having my 4th baby.

I strongly suspect that mine started after I gave birth as well. After each of my children (who each weighed 8+ lbs), I did not lose ANY weight in the 3 weeks after childbirth ...2 lbs was my biggest loss. How do you give birth to an 8 lb baby and lose 1 lb?? It took me a full year of dieting after giving birth to even lose their birth weights! The doctors never even suggested thyroid issues...just told me to keep dieting and exercising. I've always been made to feel like they thought I was lying when I would say that I was hardly eating and exercising every day. Very frustrating.

fiberartist219

I strongly encourage you to get treatment for it whether or not you have health insurance. I find that the testing and medication is not that expensive. I want to say that the blood tests are probably less than $100 and the medication itself is $12 for a month's supply without insurance. You only have to get tested a couple times a year unless your symptoms change.

My life is so much better when my thyroid hormones are stable and adjusted. If I went without meds, I'd be asleep on the couch all weekend and barely able to function.

seaglass2

Hi Lisa,
Hang in there! I hope your medical insurance comes through soon so you can receive treatment. If I were you and could swing it I would go to the doctor and have the tests to confirm if you have hashi's. You know which ones to request based on the information on Stop the thyroid madness.

As you know there are many medications. STTM has lots of information on Armour. It is cheaper than the synthetics (which is why I think the drug companies tried to get the FDA to shut down Forrest a couple of years ago but public outcry made them think again) and the only way you are going to feel better if it is in fact hashi's is to be medicated.

If you are a private pay patient, there really would be no record of your diagnosis since you are not submitting anything to insurance so I am not sure how an insurance company would learn of a pre-existing condition.

With your question in regards to being medicated and weight loss. Being medicated has not made losing or keeping weight off any easier. But I do feel better and have a better sense of well-being with the medication.

In your posts you mention you have young children that could account for the fatigue and being tired could account for loss of sex drive and just about being able to enjoy anything in life. Where you are in life, your lifestyle, level of stress could be a factor too - not just hashi's.

Good luck!!
Donna

p.s. - have you tried any dietary changes like eliminating gluten?

Just1forMe

If you are a private pay patient, there really would be no record of your diagnosis since you are not submitting anything to insurance so I am not sure how an insurance company would learn of a pre-existing condition.

That is an interesting thought. I wish I knew someone who could confirm that for sure! I know that the last time I applied for health insurance, they asked for a list of any doctors that I had seen in the last 5 years and made me sign a release form so that they could have access to the doctor's records so I just assumed they would find out that way.

It is absolutely not the cost of a doctor's visit or the meds that I am worried about as I agree those are affordable. It is the cost of the increased monthly premium (every month for years) when we get our health insurance that I am worried about. I wish I had just gone years ago, but now we are so close to getting the health insurance, it seems silly not to wait.

In your posts you mention you have young children that could account for the fatigue and being tired could account for loss of sex drive and just about being able to enjoy anything in life. Where you are in life, your lifestyle, level of stress could be a factor too - not just hashi's.
p.s. - have you tried any dietary changes like eliminating gluten?

Ha, ha! I just turned 50 My young child is almost 9 and the other 2 are 16 & almost 20 so I am past the point of their wearing me out physically...emotionally, most definitely! :laugh:

No, I haven't tried eliminating gluten, but I have upped my protein to 40% and lowered my carbs quite a bit.

tecallahan

Lisa,
First, huge kudos for losing 72 pounds! You must be doing something right, although I don't know how with unmedicated Hashi! I cannot imagine trying to deal with it without any meds. I really hope you are soon able to get some help!!

I will admit I am in a bad place right now -- that is my thyroid is in a bad place -- and it breaks my heart reading all the stories of symptoms and misery that we all are fighting.

I am intrigued by the primal/paleo -- I'm pretty restricted as to what foods I can eat - I can't have dairy, gluten, eggs and a bunch of other foods - but my dietician has always thought I am insulin resistant so I may try it. I am halfway there without dairy and gluten :ohwell: .

My Naturopath is also convinced that stress causes some of the symptoms to be magnified - so I am trying to calm myself and forgive myself for not losing weight. But it's hard - you are brain washed for years to eat less and exercise more -- and then we don't understand why eating right and exercising doesn't really help!

I am glad that this forum is here - it's good to know you are not alone.

Terr

tannity2

Thank you for opening this discussion, Just1forMe. Enlightening to hear everyone's stories.

Here's how I found out I had Hashi's:

Two years ago I went through an incredibly stressful period when my mom died -- when I came home, I knew I had to see a doctor because I was so weak, exhausted, feeling crazy, losing hair, strange "rash-like" breakout on both sides of my nose, feeling horrible, totally not myself. But I hesitated to see a regular doctor because I'm self-employed and pay through the nose for health insurance. I was so afraid of this becoming (to the insurance co.) a "pre-existing or other condition" and my premiums increasing that I decided to see a naturopath and pay for everything myself.

Immediately, she suspected thyroid issues. She had me work directly with the labs for my blood tests -- which saved me a lot of money. When my thyroid results came out barely within the healthy ranges, she wasn't convinced I was out of the woods. She had me do another test for Hashimoto's and several food allergy tests. I was off the charts for Hashi's, and my allergy situation was alarming. I was allergic to brazil nuts, almonds, all dairy including whey, gluten, caffeine, and a daunting list of other things.

When she first put me on Armour, my heart palpitations increased so much I couldn't function, let alone sleep. So, she lowered my dosage to an amount she wasn't really comfortable with (she thought I should have more) -- but it made all the difference for me at the time. I finally had energy, the brain fog was clearing, and my hair even started growing back. It took a while before I could psychologically eliminate all the foods I was allergic to, especially gluten. I was hoping for a miracle weight loss when I finally did. Nothing. I even gained. My naturopath suggested I look at the amount of sugar in my diet and try to completely eliminate that. She also suggested I eliminate all processed foods because of a possible reaction I may be having to hidden ingredients. (No fun at all!) She also suggested something else that completely stumped me -- that I see a counselor who might be able to help me with emotional eating issues -- especially grief issues around my mom's death.

After less than a year of counseling and finally following my doctor's suggestions, I'm slowly losing weight and feeling strong, healthy -- even vibrant. I work full time teaching kids, so I put out a lot of energy, not counting exercise. I still eat a few processed foods (mainly a protein powder and a fiber bar almost daily), but I make sure they're organic and I can understand every ingredient.

I realize each of our thyroid issues are unique -- and Hashi's is unpredictable, to say the least. What works today may not work tomorrow. What works for me is just that. I think MFP has helped me turn things around because I can monitor all the adjustments I have to make to help me try to stay in balance each day. Being an autoimmune issue, it's a lifetime journey -- and I imagine, for me, that journey will continuously change course. Hope I'm up for the rollercoaster!

BTW, I'm 61. My mom was just shy of 90 when she passed. She had Hashi's, too.

pen2u

Hi Just1forMe & all, I've been logging in to MFP since July '11 but haven't found this group until today. I found out I had Hashi's after taking levothyroxine for years for hypothyroidism and suddenly having severe hyperthyroid symptoms. It turns out the manufacturer of the thyroid replacement had changed the formula but I was never informed. When I thought I was dying or at least going insane (hair loss, sudden weight loss, aging rapidly, rapid heart rate, insomnia, etc.) my primary doctor referred me to an endocrinologist who diagnosed the Hashi's. It's been a bumpy ride, with the endo not being much help after all other than checking my levels and adjusting my meds. Once when I mentioned being cold all the time she said "Buy a space heater and wear more clothes."

On my own I quit eating gluten and found that a South Beach- Primal type diet worked best to eliminate my brain fog and fatigue. I also added Wilson's Temperature Symdrome supplements which help a lot. Losing weight is really difficult, gaining much easier. With MFP it's been slow and steady, as long as I get enough exercise & avoid sugar & grains The minute I add those things I either plateau or gain.

I hope you can get the help you need w/o jeopardizing your future insurance. It's vitally important to take care of this, not just for weight loss but for your overall health. The thyroid gland makes everything else in your body run correctly. Best wishes!

seaglass2

Lisa,
I didn't realize you were 50 (I'm. 53)! That certainly changes things! A lot of the hashi's symptoms are also symptoms of perimeopause and menopause. A double whammy for sure!! My personal experience with perimenopause during my 40's was a hellish time. I am post- meonpause now and for me it has been a return to energy & vitality.

I have no idea why, I am not taking any medication (other than armour ) but I feel like the other hormonal surges have ceased.

Hope you can figure it all out. It is a journey that's for sure!

Donna

Grammyof2kids

I developed Hashimotos when I went thorugh menopause at 51,, 15 years ago . I have worked with endocrimologists, Wholistic doctors etc. and have become convinced this is an autoimmunine/immune problem, not a thyroid problem and the immune system must be addressed before real and permanent progress can be seen. I am taking Natur-throid (a hypo-allergenic version of Armour) and taken gluten out of my diet for the last six months and am working on dairy. Right now I eat only raw milk/butter etc. in limited quantities. I have done well on the Weston A. Price eating recommendations (see the website) and have recently been able to take off 40 pounds since July 2011, the first real weight loss since gaining 80 the years I was diagnosed. The Nourishing Traditions in a good cookbook to follow.

I was an elementary teacher, under a lot of stress both mentally and enviornmentally, going thorugh menopause, and at my wits end as I had never weighed more than 120 at my highest. The endo who diagnosed me through a needle biopsy kept telling me to exercise more and eat less. I was already running 3-5 miles per day and eating under 1,000 calories per day. This caused me to ruin my feet and probably set back my metobolism and had no effect on my weight. I would recommend finding a wholestic and/or naturopathic doctor to advise you on how to rebuild your immune system. . Under this plan, my allergies are finally manageable and rarely flare up. Most research shows that with Hashi, the thyroid is actually fine and many times can bounce back if the immune issues are addressed early.. Good luck, it's a tough road and you must be your own advocate.

Coccinellid

Hi Lisa,

I was diagnosed with Hashimotos at the start of my 4th pregnancy.

I think this might be a good book to read http://www.amazon.com/How-Reversed-Hashimotos-Thyroiditis-Hypothyroidism/dp/059516708X/ref=cm_cr_pr_product_top

mebohan

Going out on a limb here.... does anyone care to share any lab results? About a year ago I had my thyroid checked because despite working out alot and eating generally healthy ( at least 5 days a week anyways) I can't seem to lose a single pound.

My TSH was low but my thyroglobulin antibody was high, thyroglobulin was low, and thyroid stimulating immunoglobulin (or something like that abbreviated tsi) was "positive" when the normal range is "negative. other results were in the normal range. I am debating if I should go back and and have anything rechecked since I STILL haven't been able to lose weight after working out hard for the whole year (this time i kept a log before I found MFP, so I can show it to my doc??)

Last time we left it that I wasn't severe enough for any medication or further diagnostic imaging, but I still can't lose weight which is extrememly frustrating. I am 27 years old and have never had any children so I'm a little confused here!

If any of you have any results to share of what a "lab result" for a real problem should look like, please share. Feel free to message me if you don't want to share it with the world of MFP

seaglass2

mebohan go to the website stopthethyroidmadness.com

It is a wealth of information. It will give you an explanation of each of the tests in a thyroid panel and which ones are significant and what the results mean.

If I understood your post correctly you stated you tested positive for thyroid antibodies. If this is correct, you have autoimmune thyroid disease. Lots of us here do, don't panic. But basically it means you body is attacking your thyroid (hashimoto's disease). You probably should be on some thyroid hormone therapy. Again, check that website.