Hypothyroidism and weightloss
Replies
-
Don't you think it's possible after 10 different doctors have tested you and told you you're not hypothyroid that... you're NOT hypothyroid?
Look up the literature. reference ranges were lowered. with Hashimoto's it is entirely possible to be hypothyroid and have wonky tsh because the gland occasionally works until it doesn't.
the TPOab numbers along with the ultrasound and fine needle aspiration I went which had hurthle cells confirm my diagnosis.
My tsh has been everything from .2 below range to 5.6, but the Hashimoto's diagnosis is valid and it will entirely stop working, when is anyone's guess.
if you don't have it, good for you. I wouldn't wish it on anyone. But finding a good doctor is hard. Even harder when your tsh bounces all over the place from technically Hyperthyroid to Hypothyroid0 -
Danilynn1975 wrote: »mamapeach910 wrote: »Something to add for food for thought for those of you finding things frustrating. I was very, very fortunate to be initially diagnosed by a very good endocrinologist in a college town. He was used to advising students who would be moving on, so he gave all his patients advice to carry with them for life-long treatment plans.
What he told me was that I was going to have a fight of sorts on my hands for the rest of my life. He said that I would always have to strive to be treated by doctors by my symptoms and not be test results numbers.
If you're struggling, but test normal, perhaps you have not been treated to your optimum level yet. For example, I know, through years of treatment, that my optimum TSH level needs to be 1.2 or lower. There is a WIDE range of "normal" readings above that, but I would still feel quite awful within those readings.
If you don't have a doctor who will listen to you and treat you to the symptoms? Find a better doctor. I've never had a problem. Good doctors know about this. Bad ones don't.
See, the thing about those spots bolded is that not everyone gets that lucky.
Not many "good" doctors out there.
I've been to 10 doctors now over the last 5 years telling them something wasn't right. They all until doctor number 9 and several thousands of dollars spent after insurance and a large, large chunk of it out of pocket to get answer just to get the stupid test above and beyond the TSH test.
Which as a newly diagnosed Hashimoto's but with nodules and damage that according to the endocrinologist I saw is at LEAST 10 + years old.
Just since January of this year I have had to drive to New Orleans to get a doctor willing to order the tests, he was out of network and because of the Obamacare no longer accepts insurance anyway. Then when I got the doctor after numerous hours of my own research to find this guy, paid $1500 to get blood work done, again in New Orleans through his lab.
Then I had to bring his diagnosis and stuff back to my home 3 hours away from New Orleans and get an appointment with my PCP to get the referral to the endocrinologist. I waited 8 weeks for that appointment.
To get told that my TSH was still in range. So no treatment despite my antibodies destroying my thyroid numbering >1000. Oh and that TSH his range is .378 to 4.579, my TSH that day 4.55, so he's not going to treat because I am .02 in "range".
I am currently seeking doctor number 11 and/or saving up to go back to the doctor in New Orleans and pay out of pocket $325 for an office visit that will require more labs, more current than the Jan 30 visit I had with him, so he will prescribe medication.
Not everyone gets a good doctor, not everyone gets that lucky. Some of us go YEARS, Literally YEARS and numerous doctors with Hashimoto's, before we can ever get the diagnosis, much less decent medical care.
I also tested positive to another autoimmune at the same time. Which makes sense, they typically travel in packs. I paid out of pocket for that test too.
Yes, losing weight is possible. but this is not as easy to manage as the literature would suggest, given that good doctors are as rare as finding a diamond mine in your backyard.
My worry would be that this one dr might be out for money, not that all the rest of the Dr's didn't know what they are talking about. Not saying that is the case, but I would worry that it might be.0 -
blankiefinder wrote: »Danilynn1975 wrote: »mamapeach910 wrote: »Something to add for food for thought for those of you finding things frustrating. I was very, very fortunate to be initially diagnosed by a very good endocrinologist in a college town. He was used to advising students who would be moving on, so he gave all his patients advice to carry with them for life-long treatment plans.
What he told me was that I was going to have a fight of sorts on my hands for the rest of my life. He said that I would always have to strive to be treated by doctors by my symptoms and not be test results numbers.
If you're struggling, but test normal, perhaps you have not been treated to your optimum level yet. For example, I know, through years of treatment, that my optimum TSH level needs to be 1.2 or lower. There is a WIDE range of "normal" readings above that, but I would still feel quite awful within those readings.
If you don't have a doctor who will listen to you and treat you to the symptoms? Find a better doctor. I've never had a problem. Good doctors know about this. Bad ones don't.
See, the thing about those spots bolded is that not everyone gets that lucky.
Not many "good" doctors out there.
I've been to 10 doctors now over the last 5 years telling them something wasn't right. They all until doctor number 9 and several thousands of dollars spent after insurance and a large, large chunk of it out of pocket to get answer just to get the stupid test above and beyond the TSH test.
Which as a newly diagnosed Hashimoto's but with nodules and damage that according to the endocrinologist I saw is at LEAST 10 + years old.
Just since January of this year I have had to drive to New Orleans to get a doctor willing to order the tests, he was out of network and because of the Obamacare no longer accepts insurance anyway. Then when I got the doctor after numerous hours of my own research to find this guy, paid $1500 to get blood work done, again in New Orleans through his lab.
Then I had to bring his diagnosis and stuff back to my home 3 hours away from New Orleans and get an appointment with my PCP to get the referral to the endocrinologist. I waited 8 weeks for that appointment.
To get told that my TSH was still in range. So no treatment despite my antibodies destroying my thyroid numbering >1000. Oh and that TSH his range is .378 to 4.579, my TSH that day 4.55, so he's not going to treat because I am .02 in "range".
I am currently seeking doctor number 11 and/or saving up to go back to the doctor in New Orleans and pay out of pocket $325 for an office visit that will require more labs, more current than the Jan 30 visit I had with him, so he will prescribe medication.
Not everyone gets a good doctor, not everyone gets that lucky. Some of us go YEARS, Literally YEARS and numerous doctors with Hashimoto's, before we can ever get the diagnosis, much less decent medical care.
I also tested positive to another autoimmune at the same time. Which makes sense, they typically travel in packs. I paid out of pocket for that test too.
Yes, losing weight is possible. but this is not as easy to manage as the literature would suggest, given that good doctors are as rare as finding a diamond mine in your backyard.
My worry would be that this one dr might be out for money, not that all the rest of the Dr's didn't know what they are talking about. Not saying that is the case, but I would worry that it might be.
It was my eye doctor who told me what to go ask to be tested when after losing all my eyelashes on the bottom lid and 90% of the top.
If you have another reason my eyelashes fell out, I'll be more than happy to check it out. I miss them and would like them back.
The endocrinologist did confirm via a needle into my throat and an ultrasound I do have Hashimoto's. But I only got that referral after the nurse practioner, my pcp, looked over the test results and said, I kid you not, huh, never thought to test your antibodies.0 -
I don't understand why an endocrinologist that you were referred to by your PCP would diagnose you with Hashimoto's and then refuse to treat you. What was his plan to deal with the Hashimoto's?0
-
If you are being treated for a condition then that's great and I wish you all the best. However, the way you presented the story is why the outcome seems questionable. It seems that you self-diagnosed a problem, and then doctor-shopped until you found someone (who you paid) to agree with you. What is more likely? That you had ten bad doctors and one good one who had to be paid directly, or ten good doctors and one bad one who had to be paid directly?
Again, if you have a condition and are being treated then that's what matters and I wish you all the best.
I did look up the literature as you suggested. I used UpToDate which is a popular guidelines repository for physicians. The following is a direct quote from UpToDate on their article titled "Laboratory assessment of thyroid function."Presently there is considerable controversy as to the appropriate upper limit of normal for serum TSH. Most laboratories have used values of about 4.5 to 5.0 mU/L. A monograph published by the National Academy of Clinical Biochemistry argues that the upper limit of normal of the euthyroid reference range should be reduced to 2.5 mU/L because 95 percent of rigorously screened euthyroid volunteers have serum values between 0.4 and 2.5 mU/L [6]. However, a population study from Germany, which excluded patients with a positive family history, goiter, nodules, or positive anti-TPO antibodies, found a normal reference range of 0.3 to 3.63 mU/L [7]. The use of 2.5 mU/L as the upper limit of normal for serum TSH will increase substantially the number of patients in the United States diagnosed with subclinical hypothyroidism. Presently, controversy exists as to whether patients with serum TSH values between 5 and 10 mU/L require treatment (see "Subclinical hypothyroidism"). Until there are data demonstrating an adverse biologic significance for serum TSH values between 2.5 and 5.0 mU/L, the wisdom of labeling such patients as hypothyroid is questionable.
It seems that the first ten docs were practising well within clinical guidelines and medical literature, whereas the final doc is pushing the limits of what is clinically acceptable. In twenty years that final doc (and those practising like him) may be proven to be a hero or a villain... but for now, the evidence is murky.
Good luck with your health and reaching your goals, truly! Self-advocacy is very important in health care.0 -
blankiefinder wrote: »I don't understand why an endocrinologist that you were referred to by your PCP would diagnose you with Hashimoto's and then refuse to treat you. What was his plan to deal with the Hashimoto's?
Cone back in 6 months for more blood work and an ultrasound. Take selenium and vit d 10,000 iu a week because my vitamin d test revealed my level is a 13, optimal range is supposed to be around 80.
Also found my iron levels are super low too.0 -
If you are being treated for a condition then that's great and I wish you all the best. However, the way you presented the story is why the outcome seems questionable. It seems that you self-diagnosed a problem, and then doctor-shopped until you found someone (who you paid) to agree with you. What is more likely? That you had ten bad doctors and one good one who had to be paid directly, or ten good doctors and one bad one who had to be paid directly?
Again, if you have a condition and are being treated then that's what matters and I wish you all the best.
I did look up the literature as you suggested. I used UpToDate which is a popular guidelines repository for physicians. The following is a direct quote from UpToDate on their article titled "Laboratory assessment of thyroid function."Presently there is considerable controversy as to the appropriate upper limit of normal for serum TSH. Most laboratories have used values of about 4.5 to 5.0 mU/L. A monograph published by the National Academy of Clinical Biochemistry argues that the upper limit of normal of the euthyroid reference range should be reduced to 2.5 mU/L because 95 percent of rigorously screened euthyroid volunteers have serum values between 0.4 and 2.5 mU/L [6]. However, a population study from Germany, which excluded patients with a positive family history, goiter, nodules, or positive anti-TPO antibodies, found a normal reference range of 0.3 to 3.63 mU/L [7]. The use of 2.5 mU/L as the upper limit of normal for serum TSH will increase substantially the number of patients in the United States diagnosed with subclinical hypothyroidism. Presently, controversy exists as to whether patients with serum TSH values between 5 and 10 mU/L require treatment (see "Subclinical hypothyroidism"). Until there are data demonstrating an adverse biologic significance for serum TSH values between 2.5 and 5.0 mU/L, the wisdom of labeling such patients as hypothyroid is questionable.
It seems that the first ten docs were practising well within clinical guidelines and medical literature, whereas the final doc is pushing the limits of what is clinically acceptable. In twenty years that final doc (and those practising like him) may be proven to be a hero or a villain... but for now, the evidence is murky.
Good luck with your health and reaching your goals, truly! Self-advocacy is very important in health care.
Eyelashes are gone. Sort of speaks volumes something is wrong. The endocrinologist confirmed everything the New Orleans doctor found. Redundant blood work.0 -
You definitely need to up your vitamin D, that may be affecting your thyroid health. Take liquid drops, not chewable tablets or anything else. 5000 IU a day is what my dr has me on for a similar level.0
-
Don't you think it's possible after 10 different doctors have tested you and told you you're not hypothyroid that... you're NOT hypothyroid?
It is possible. However, I had about that many gp's say "Oh a TSH of 5 is well within normal range. There is nothing wrong with your thyroid." Ignoring hairloss, weight gain, depression, dry skin, brain fog, constipation, brittle nails, constantly being cold, fatigue, anxiety attacks, insomnia, hypersomnia, lethargy, etc.... for over a decade until a doctor said "lets just see what happens to those symptoms on thyroxine" and tested me for Hashimotos. I'm not saying all GPs are like that, but lets be honest having the vague symptoms of hypothyroidism being ignored is not unusual.0 -
mamapeach910 wrote: »mamapeach910 wrote: »Hashi's patient for 25 years here. Once you're properly medicated, losing weight is no different than anyone else. It's just a matter of monitoring your calories, creating a deficit, and exercising. Totally possible to lose weight.
I have other autoimmune diseases in addition to the Hashi's and have fatigue from one of them, so it's hard for me to tell when the Hashi's is acting up. I keep in pretty good touch with my endo because of it. I also moderate my carbs. It helps me keep my energy levels in check. I don't take them really low... just 150g at the highest. This isn't necessary for everyone with hypo-T, though.
Im pretty sure it's possible I've lost 32 pounds but now I feel like it's slowing no matter what . I don't log in my cardio or exercise anymore because I think it helps me to be more cautious on my calories . ( lol so I don't eat my hard work ) but hopefully the scale continues to move . Thank you so much
Weight loss slows down as you get closer to goal. Have you readjusted your goals through MFP recently?
Yes, I've lowered my calorie intake and upped my exercise. I've been losing like half a pound or so a month sometimes nothing isn't that pretty slow ? Or I don't know I've been exercising 5x a week I mean I can see a change in my muscles but not any loss0 -
lesliedias22 wrote: »Hashis here too... Diagnosed about 4 years ago. Not going to repeat what everyone's said on here, so all I'm going to say is... It can definitely be frustrating.
I was always really active my whole life, so I find that I personally have to continue to be active and when I wanna create a deficit and speed up the weight loss process, I gotta reeeeaaaally amp the exercise up. I do a lot of weight lifting to keep the metabolism up in general though (although I've been slacking lately)... Makes me feel a whole lot better compared to the days I do absolutely nothing. I always find I have more energy after a workout for that reason for sure.
True ok , but what if I have amped up my exercise? You think I need to turbo it then lol idk I guess I just need help!0 -
Random question here. But since this "autoimmune diseases travel in packs" thing has been coming up a lot...
What are some of the other autoimmune diseases everyone has going on?
Hereditary? Random?0 -
lesliedias22 wrote: »Random question here. But since this "autoimmune diseases travel in packs" thing has been coming up a lot...
What are some of the other autoimmune diseases everyone has going on?
Hereditary? Random?
I've mainly just got allergies and asthma which is in a similar vein as the body's normal immune functions get confused. From potentially life threatening to mild reactions: lavender, perfume, wheat, grass, dust, mold, lilies, juniper, lilacs, cats, copper, bees, band aid adhesives, nickel, SLS, tin (?? still figuring this one out), and quite likely a few others. I carry serious antihistamines and an inhaler with me everywhere and always have. But hey, my celiac test came back negative, so I got that going for me.
As far as my Hashimotos goes, only my m. aunt has been diagnosed with it. We both started showing symptoms as adolescents which I think is interesting. However- my husband's maternal grandma, aunt, mother, sister and himself all have Hashimotos too. Although only his grandma & aunt are experiencing any symptoms & are medicated for it (early 80's and late 50's). Again no other autoimmune diseases have been diagnosed (although his mom has a flag for RA). I think it's really interesting how it progresses differently in our families.0 -
1) If your TSH is normal, then this does not explain hair loss. Whatver is causing this, it is not Hashimoto's. It is common for Hashimoto's and other autoimmune disorders to be discovered before they cause any sympotms. Also it is not uncommon to not need meds after giving birth for a while, as your hormones are changing a lot. Even if you are hypothyroid and are going to be again hypothyroid in a few months, it is possible to get a break after giving birht, where you might even become temporarily hyperthyroid.
2) If you are not losign weight, you are eating at maintenance. If you are breastfeeding too, and still not losing, then you are eating a lot more than maintenance for your weight without breastfeeding. Either your calorie goal is not realistic and much higher than it should be (e.g. you are overestimating a lot exercise calories) or you are not properly countign calories (e.g. not using a food scale).0 -
lesliedias22 wrote: »Hashis here too... Diagnosed about 4 years ago. Not going to repeat what everyone's said on here, so all I'm going to say is... It can definitely be frustrating.
I was always really active my whole life, so I find that I personally have to continue to be active and when I wanna create a deficit and speed up the weight loss process, I gotta reeeeaaaally amp the exercise up. I do a lot of weight lifting to keep the metabolism up in general though (although I've been slacking lately)... Makes me feel a whole lot better compared to the days I do absolutely nothing. I always find I have more energy after a workout for that reason for sure.
True ok , but what if I have amped up my exercise? You think I need to turbo it then lol idk I guess I just need help!
I don't know about everyone else, but I know for myself, both before and after my DX, more exercise never worked to get the fat to go. Only cutting calories did that.
0 -
lesliedias22 wrote: »Random question here. But since this "autoimmune diseases travel in packs" thing has been coming up a lot...
What are some of the other autoimmune diseases everyone has going on?
Hereditary? Random?
My mom has Sjogren's , Crohn's and Rheumatoid arthritis, and Fibromyalgia.
My niece was diagnosed Celiac at age 10, now has Juvenile RA. She's 19 this year.
they rarely present alone.0 -
lesliedias22 wrote: »Random question here. But since this "autoimmune diseases travel in packs" thing has been coming up a lot...
What are some of the other autoimmune diseases everyone has going on?
Hereditary? Random?
Mine were random, but celiac should be hereditary. I think it's possible that the ones I have went undiagnosed in other family members. My doctor theorized that family members possibly carried the genes but they were never activated.
I also have celiac disease, fibromyalgia (my endocrinologist does too, and she swears up and down that one day they'll link this to autoimmunity
) and psoriatic arthritis. All of the women in my family have Hashimoto's.
0 -
-
A TSH of 4.5 shows hypo.0
-
I have no idea where you live, but this claim makes no sense to me, unless you are somewhere where no endocrinolgist exist and you are expecting a random dr, like a pulmonologist to treat hypothyroidism. It is an illness so common, that it is trivial for an endocrinologist to diagnose and treat.0 -
lesliedias22 wrote: »Random question here. But since this "autoimmune diseases travel in packs" thing has been coming up a lot...
What are some of the other autoimmune diseases everyone has going on?
Hereditary? Random?
Type 1 diabetes, hashimotos, celiac here. Same with my mom. My son had type 1 diabetes and Addisons. No hashi. Sister has celiac and nothing else. FWIW I've had hashi for 30 years, treated with levothyroxine and am losing weight on mfp with a food scale and exercise.
@Danilynn1975 did I read you right where they did a biopsy on your thyroid before/without doing bloodwork? I've had an ultrasound and Bloodwork and fortunately didn't need a biopsy but the biopsy would have been a last resort to check for cancer.
0 -
lesliedias22 wrote: »Random question here. But since this "autoimmune diseases travel in packs" thing has been coming up a lot...
What are some of the other autoimmune diseases everyone has going on?
Hereditary? Random?
Type 1 diabetes, hashimotos, celiac here. Same with my mom. My son had type 1 diabetes and Addisons. No hashi. Sister has celiac and nothing else. FWIW I've had hashi for 30 years, treated with levothyroxine and am losing weight on mfp with a food scale and exercise.
@Danilynn1975 did I read you right where they did a biopsy on your thyroid before/without doing bloodwork? I've had an ultrasound and Bloodwork and fortunately didn't need a biopsy but the biopsy would have been a last resort to check for cancer.
The biopsy was to rule out cancer. Came back inconclusive. Repeat it in 6 months. Did show Hashimoto's. The biopsy was done after a white blood cell came back 3 times very high and other blood work off as well.
The biopsy came quickly after the ultrasound showed growths and swelling.
Then 3 different sets of more blood draws a week apart all showed Hashimoto's antibodies.
My aunt died from grave's disease that sent her into a thyroid storm in 1970, 5 years before I was born. Her heart gave out from it.
So they tested me for both. I actually have antibodies for Both graves and Hashimoto's.
This is part of the issue they have with treating me. With antibodies for both, my thyroid could swing quickly and dangerously fast.0 -
Ok sorry I missed all of that in all of the replies. That's crazy to have antibodies for both graves and hashis. And I'm sure very difficult to treat.0
-
I had a doctor tell me I was tired because I have kids, never mind the 20+ other symptoms I had on a checklist for him. My new doctor ordered tests and found out I have Hashimoto's. My tsh was in high normal range but my antibody count was 818, normal range is in the 30s.
My recommendation is get an antibody test to check for Hashimoto's since it is the main cause of hypothyroidism. I have found that I can't lose weight on 1400 calories per day, unless I go lower carb and gluten free. Gluten mimics thyroid cells and makes the immune system want to attack it, which worsens symptoms. I get terrible bloating (up to 3lb), brain fog, fatigue, irritability and lack of concentration if I eat a serving or more of a glutenous food.
Also, if you get synthroid, or other thyroid pills, take them an hour before eating or four hours afterward for full effect. And time other medications around them in the same way. Vitamin D, zinc, and selenium are often found to be deficient in hypothyroid/hashimoto's patients, so consider taking supplements and see if anything improves.0 -
I hope aggelkik comes in and rebuts that whole gluten mimicking thyroid cells. That sounds like woo to me.
Also, bloating is gas... how does gas weigh 3 pounds?0 -
It's an excuse - nothing more. One I've used to defend my lazy behavior for over 10 years until I got sick of it. There are several elite level athletes performing at a level higher than they were prior to total thyroidectomy.
CICO - losing weight is as easy as simple diet and exercise.0 -
It's an excuse - nothing more. One I've used to defend my lazy behavior for over 10 years until I got sick of it. There are several elite level athletes performing at a level higher than they were prior to total thyroidectomy.
CICO - losing weight is as easy as simple diet and exercise.
I think you might be more accurate to say "It can be used as an excuse."
Not everyone posting here is excuse-making.
But I will agree, there is some "you don't know my hypothyroidism!"
0 -
mamapeach910 wrote: »It's an excuse - nothing more. One I've used to defend my lazy behavior for over 10 years until I got sick of it. There are several elite level athletes performing at a level higher than they were prior to total thyroidectomy.
CICO - losing weight is as easy as simple diet and exercise.
I think you might be more accurate to say "It can be used as an excuse."
Not everyone posting here is excuse-making.
But I will agree, there is some "you don't know my hypothyroidism!"
Thank you - very true.
Willpower can overcome almost anything, especially hypothyroidism. Just need to find a motivator that suits you.
0 -
Hashi here - I was just diagnosed this spring and am still working on getting medication right. I think I need more than the 50mg I was initially prescribed. I am going back to monitor soon though so that should get sorted.
Thanks for all the advice above. I've gained 25 pounds pretty quickly at least in part as a result of Hashimoto's and am anxious to get back down to my regular (and then ideally goal) weight.
0 -
Anyone with advice on losing weight with hypothyroidism?
I have Hashimoto's (autoimmune thyroid disease). I lost the weight and have maintained for a year by following the advice in the Sexypants post: https://community.myfitnesspal.com/en/discussion/1080242/a-guide-to-get-you-started-on-your-path-to-sexypants/p1
Meds (in my case, Synthroid & Cytomel) reduce the fatigue, so I can be more active. But I kept gaining until I learned to log everything I eat & drink accurately & honestly. And I lost the weight before my levels ever entered the "normal" range. Logging changed my life.0
This discussion has been closed.
Categories
- All Categories
- 1.4M Health, Wellness and Goals
- 393.8K Introduce Yourself
- 43.9K Getting Started
- 260.3K Health and Weight Loss
- 176K Food and Nutrition
- 47.5K Recipes
- 232.6K Fitness and Exercise
- 428 Sleep, Mindfulness and Overall Wellness
- 6.5K Goal: Maintaining Weight
- 8.6K Goal: Gaining Weight and Body Building
- 153.1K Motivation and Support
- 8.1K Challenges
- 1.3K Debate Club
- 96.4K Chit-Chat
- 2.5K Fun and Games
- 3.8K MyFitnessPal Information
- 15 News and Announcements
- 1.2K Feature Suggestions and Ideas
- 2.6K MyFitnessPal Tech Support Questions