Hashimotos, interpreting blood results anyone similar?
Replies
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I wanted to reply since I just recently started taking thyroid supplements for hashi's. my tsh would be 2 to mostly high normal and then creep up high between 5 and 9 with fluctuating antibodies. i went to several drs for 2 years watching my levels change.
and trying to fix my health with diet, vitamin d ( which was low as well). everyone wanted to wait and watch my thyroid die.
all of your symptoms i had. with hashi's your levels can be normal one day and then the next not.
not sure if you had a second blood test but i would.
i also work with a naturopathic dr. as well using glandular supplements that did work for a while & going gluten.
i suggest reading The root cause http://www.amazon.com/Hashimotos-Thyroiditis-Lifestyle-Interventions-Treating/dp/0615825796
today, i am 3 weeks on natural thyroid replacement. the weight loss hasn't started but my brain is out of the fog, my energy and focus is better. i don't have my crazy mood swings and i can walk farther and not want to lay down and go to sleep.
so....not being a dr or expert, i can just share my experience. it's your body, you know how you feel. gather info, document your blood work and physical patterns and take that to as many doctors that you need if you need.
finally....no matter how much medicine you take, food and diet is very important with autoimmune thyroid disease.
we need to address the inflammation as our number one plan of healing attack.
good luck God bless0 -
OP, I was in a similar situation to you and was also told by my doctor that it couldn't possibly be my thyroid, as I was taking levothyroxine and my TSH was at 3 (no actual thyroid hormones were measured during my initial treatment). I still had ALL the symptoms of hypothyroidism, and was so, so, miserable.
Please visit http://www.stopthethyroidmadness.com for a wealth of information on this condition and how to get correct treatment.
I know it is difficult, if not impossible, to get on natural dessicated thyroid in the UK - but I firmly believe that it saved my life. Please send me a friend request if I can help in any way.0 -
You aren't being a pain at all. When it comes down to it, the only advice you might want to follow from any of us is to go to a different doctor and to read any informational links provided.Im sorry guys for being a pain0 -
I have hashimotos hypothyroidism..its a pain in the a**...Im learning to deal with it, I've had it for at least 5 years now, medication helps but not all the symptoms ever go away, I'm not dying so I'm thankful, but yes the weight issue is up n down for me, trying to do better!!0
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Kaiser's normal range for Free T4 is 0.8 - 1.5 ng/dL. If the same standard of measurement is being used, your number is really high.
You have every right to advocate for yourself! Just because you're in the "normal range" which differs from lab to lab, doesn't mean that number is "normal" for you. (Said my old doc--she's AWESOME!)
Mary Shomon is a thyroid patient advocate. She's mentioned in this article:
http://www.nytimes.com/2005/11/08/health/08hypo.html
The article also shows how divided the medical community is on treatment.
Her site also has a state by state directory of Endos with patient ratings of them.
Hang in there!!!!0 -
My mom has Hashimotos. When I was a little kid (and she was about 19) she gained almost 100 pounds in less than 5 months. Her whole life she has been very sick and tired all the time. Nothing seems to help her (except when she got prescribed adderral she lost a bunch of weight, for obvious reasons, but it came back.) It is best to get it in check as early as you can. My moms thyroid is almost nonfunctional and it took her forever to find a medication that worked for her, and it still doesn't work too well.0
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Goiter =/= hypo or hyper. It's simply an enlarged thyroid gland. You can have a low/non functioning goiter like in Hashimotos or iodine deficiency or a hyperfunctioning goiter with toxic adenomas/carcinomas and autoimmune conditions like Graves' disease. The mix of your hypo and hyper symptoms could be from the intial phase of a chronic hypothyroidism in which case your gland gets attacked and releases preformed thyroid hormone. Another possibility is Graves' disease which typically presents as hyperthyroidism but can show intermittent bouts of hypothyroidism due to occasional production of antibodies similar to those seen in Hashimoto's thyroiditis.0
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Goiter =/= hypo or hyper. It's simply an enlarged thyroid gland. You can have a low/non functioning goiter like in Hashimotos or iodine deficiency or a hyperfunctioning goiter with toxic adenomas/carcinomas and autoimmune conditions like Graves' disease. The mix of your hypo and hyper symptoms could be from the intial phase of a chronic hypothyroidism in which case your gland gets attacked and releases preformed thyroid hormone. Another possibility is Graves' disease which typically presents as hyperthyroidism but can show intermittent bouts of hypothyroidism due to occasional production of antibodies similar to those seen in Hashimoto's thyroiditis.
I was actually googling for a long time last night the symptoms for hyper...I DO have symptoms for hyper too! I read somewhere than when the antibodies are up that the thyroid overproduces and underproduces, which is why the docs cant give me medication? I understand that, but does this mean then that if thats the case i have to wait for my thyroid to die?
Oh and good news, I saw a different GP in the practice this morning and she said to me 'cant help' I said Im not leaving this chair until you refer me...AND SHE DID! I am seeing an endo on the 29th april...feeling good xx0 -
I have been hypothyroid for many years with frustrating dr's visits. Many GP's believe you're fine if you're in the normal range. NOT true. See an Endocrinologist! They are in in-tune with modern practices for treating the disease. I good Endo will listen to your symptoms and treat you accordingly while monitoring levels. I would also suggest being tested for Lime Disease. So many of the symptoms are the same and early detection is your best bet for a total recovery. Hang in there and advocate for yourself, no one else will.0
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I have been told that diet changes are good for Hashimotos...Im seeing equal information for both Paleo and Gluten free...oh Im so confused!0
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I have Hashimoto's too, for about 20+ years. My doc tests my blood 1x a year and calls it all good and I repeatedly tell him that I don't feel well. I'm tired, frequently cold, wake up in the morning like I haven't slept a wink. I went to a specialist, he upped my dose. I felt better than I had in years!! Retested my blood, I was hyperthyroid and they told me I can't continue that way, dropped my meds back down and guess what. Feel like crap again.
Losing weight is very hard. I've resigned to the fact that I'm not going to get any better so I quit trying to get help for it. I take my 125mcg a day of meds and the day is what it is. My specialist released me from his care, said there was nothing more he could do for me. What kind of doc does that?
I'm due for my annual bloodwork...I don't expect anything different than other years.
Good luck to you. I hate having this problem.0 -
I know that this seems to be the answer for a lot of things right now, but when my naturopath noticed I had a high count of thyroid antibodies in my system (even though I had normal thyroid function), she put me on a gluten free diet.
9 months later, I had my blood work retested and my thyroid antibody count had decreased SIGNIFICANTLY.
I wasn't convinced, still, that the two were related, so I've been eating gluten again for about 9 months. I need to go have my levels tested again at this point (but have been putting it off because I love bread!), and once I do that, if my thyroid antibody levels have increased again, I'm going to go GF forever (I think).
I don't want to be GF, and I am super NOT into fad diets, but I also don't want my thyroid to die and have to take thyroid supplement pills the rest of my life (like my mom does).
I know that the interwebs can be a scary place, but there seem to be a lot of anecdotal stories linking thyroid problems to gluten consumption. <sigh> But, I love bread.0 -
Goiter =/= hypo or hyper. It's simply an enlarged thyroid gland. You can have a low/non functioning goiter like in Hashimotos or iodine deficiency or a hyperfunctioning goiter with toxic adenomas/carcinomas and autoimmune conditions like Graves' disease. The mix of your hypo and hyper symptoms could be from the intial phase of a chronic hypothyroidism in which case your gland gets attacked and releases preformed thyroid hormone. Another possibility is Graves' disease which typically presents as hyperthyroidism but can show intermittent bouts of hypothyroidism due to occasional production of antibodies similar to those seen in Hashimoto's thyroiditis.
I was actually googling for a long time last night the symptoms for hyper...I DO have symptoms for hyper too! I read somewhere than when the antibodies are up that the thyroid overproduces and underproduces, which is why the docs cant give me medication? I understand that, but does this mean then that if thats the case i have to wait for my thyroid to die?
Oh and good news, I saw a different GP in the practice this morning and she said to me 'cant help' I said Im not leaving this chair until you refer me...AND SHE DID! I am seeing an endo on the 29th april...feeling good xx
Good for you for being assertive and sticking up for yourself. It is ridiculous you had to go to four different GPs to get referred to an endocrinologist, but I"m glad you've got the appointment and that it is only a few weeks away. Best of luck, I hope they are able to get your medical problems treated quickly so you can begin enjoying life again.0 -
Your symptons sound like all mine when I was first diagnosed with Graves Disease with Hashimoto's Throiditis. I have no idea was my blood work numbers were. My endocrinologist just told me that I was off the charts Hyperthyroid.
But, I wasn't gaining weight, I was eating enough for 2 people every day and still losing weight. That was until they treated me with radioactive iodine after first trying antithyroid medications which I developed an allergic reaction to after about 3-4 months. Then I blew up like a balloon almost overnight.
I don't know the rules in the UK, but I would press your doctor to send you to an endocrinologist who can run other tests to see if other things are going on (adrenal fatigue, etc) to get you the right treatment.
Keep contacting the doctor until he takes your syptoms seriously and refers you to a specialist!0 -
Lisa, wonderful!Goiter =/= hypo or hyper. It's simply an enlarged thyroid gland. You can have a low/non functioning goiter like in Hashimotos or iodine deficiency or a hyperfunctioning goiter with toxic adenomas/carcinomas and autoimmune conditions like Graves' disease. The mix of your hypo and hyper symptoms could be from the intial phase of a chronic hypothyroidism in which case your gland gets attacked and releases preformed thyroid hormone. Another possibility is Graves' disease which typically presents as hyperthyroidism but can show intermittent bouts of hypothyroidism due to occasional production of antibodies similar to those seen in Hashimoto's thyroiditis.
I was actually googling for a long time last night the symptoms for hyper...I DO have symptoms for hyper too! I read somewhere than when the antibodies are up that the thyroid overproduces and underproduces, which is why the docs cant give me medication? I understand that, but does this mean then that if thats the case i have to wait for my thyroid to die?
Oh and good news, I saw a different GP in the practice this morning and she said to me 'cant help' I said Im not leaving this chair until you refer me...AND SHE DID! I am seeing an endo on the 29th april...feeling good xx0 -
Thanks guys, Ill keep you all informed...if you dont mind of course xx0
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I know that this seems to be the answer for a lot of things right now, but when my naturopath noticed I had a high count of thyroid antibodies in my system (even though I had normal thyroid function), she put me on a gluten free diet.
9 months later, I had my blood work retested and my thyroid antibody count had decreased SIGNIFICANTLY.
I wasn't convinced, still, that the two were related, so I've been eating gluten again for about 9 months. I need to go have my levels tested again at this point (but have been putting it off because I love bread!), and once I do that, if my thyroid antibody levels have increased again, I'm going to go GF forever (I think).
I don't want to be GF, and I am super NOT into fad diets, but I also don't want my thyroid to die and have to take thyroid supplement pills the rest of my life (like my mom does).
I know that the interwebs can be a scary place, but there seem to be a lot of anecdotal stories linking thyroid problems to gluten consumption. <sigh> But, I love bread.
Ummm, pardon me, but G-Free is not a 'fad diet' when it improves your health. Some of us have serious health issues related to gluten (ie celiac disease, etc) and unfortunately even if we love bread and other products with gluten in it (you'd be surprised that that includes some cosmetics and shampoos and other non-food products that can affect a person with gluten issues even though not ingested) we MUST go without these things or have a horrible and possibly shortened life. It is what it is, and I'd rather have my health than eat bread any day.
I hope you find some answers from your testing or physical experiences. Wishing you Good luck!0 -
I apologize if this has been asked/answered already but do you see a general physician or and endo? Do you know your T3? I am not a doctor, but I have hashimoto's and so does my daughter. Our experience was that we were symptomatic before it showed in our labs - I think because of the auto immune factor. Also, our T3 showed a need for meds before our tsh or t4. Some endos think that medicating early will help preserve thyroid tissue. Gluten and dairy are both very bad for hashis. Also, I have felt 100 times better on armour than levethyroxine, just my two cents. Message me if you want more details!0
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For a year I cycled between hypo and hyper but my blood tests were always "normal". It wasn't until I started having extreme hyper symptoms for 3 months and then I switched to hypo symptoms that my blood work came back as out of range and I started treatment with Synthroid. I was later told I had gone through Thyroiditis. The only thing that the doctor's did for me when my blood work showed normal was to treat my symptoms (beta blockers and anxiety medication). Also, I had a 2nd autoimmune disease that started around the same time so those symptoms confused the doctor because he was looking for one disease, not two.0
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Yes, please do keep us informed.Thanks guys, Ill keep you all informed...if you dont mind of course xx0 -
I was diagnosed with hypothyroidism at age 32 and your symptoms sound so familiar. I was put on Synthroid and over time, my weight steadily increased. Every time I would say I didn't feel well, I was offered antidepressants, beta blockers, and of course, statins. The TSH is seen as the end-all be-all of diagnostic tools which is pathetically incorrect and kept me from getting any increase in medication. "Your TSH is in range, your thyroid is treated properly." Oh, really? I kept asking for something other than a T4 med (Synthroid, levothyroxine) like Armour or Westthroid which are T3/T4 meds but was constantly denied. Sadly this situation went on until last fall when at age 56 I was finally put on a T3/T4 med and things have changed dramatically. I finally have energy, my aches and pains are fewer and I've been able to lose some weight again.
There is a very good website where you can post your test results and get some advice and maybe a link to a doctor in your area: http://www.medhelp.org/forums/Thyroid-Disorders/show/73
I wish you the best of luck and hope you find help much sooner than I did.0 -
You might want to ask the question over on http://www.reddit.com/r/keto
A few Hashimotos people post over there and they might be able to help.0 -
I am in the UK too. I was not pleased with my doctor so I registered with another practice - they do not like it but it is your right to do so. Try to go for a youngish doctor not one that qualified 50 years ago. Best of luck.0
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I've been dealing with similar symptoms to the OP for over 20 years. Weight has literally more than doubled in that time. 7.5 stone to over 18 stone
T4 levels were just within the "normal" range but I hassled my dr and he eventually prescribed levothyroxine which has helped a bit. I've also been diagnosed with sleep apnoea, diabetes, nasal congestion and asthma. I have medications for all of these! I suffer from swelling of my throat, nasal tissue, parotid glands and from headaches and earaches. I'm sure they're all connected but when I go to see my GP they will only look at one symptom at a time!!!0 -
If you were italian I'd refer you to my doctor. My blood work is almost perfect, nothing is out of range (except vit.D) and yet he thinks my thyroid is not working well and he wants me to have a scan. And he said I have to start taking at least some herbs to help my thyroid, but I will wait for the scan. No reason to start taking something without a reason, right?
I dont' want to be dependent on medications for the rest of my life, I see my cousin and my aunts taking their thyroid medications everyday and I don't want to do it.0 -
For a year I cycled between hypo and hyper but my blood tests were always "normal". It wasn't until I started having extreme hyper symptoms for 3 months and then I switched to hypo symptoms that my blood work came back as out of range and I started treatment with Synthroid. I was later told I had gone through Thyroiditis. The only thing that the doctor's did for me when my blood work showed normal was to treat my symptoms (beta blockers and anxiety medication). Also, I had a 2nd autoimmune disease that started around the same time so those symptoms confused the doctor because he was looking for one disease, not two.
My husband is going through diagnosis and they suspect Hashimoto's now, but they also suspect Rheumatoid Arthritis. All the testing STARTED around RA, he's started seeing a Rheumatologist - but then one of the Thyroid tests came out a bit high (sorry not sure which one). He had an ultrasound on his Thyroid and they said it was looking all chewed up and like it had been dissolving, so would be behaving erratically. Now there are other neural symptoms which had them arranging a CT scan for Multiple Sclerosis.
My point being, there might be a combination of immune complaints - from everything I have read, they often come in pairs. My husband is currently most likely to have Hashi's *plus* RA but still waiting. He will be seeing and Endo, but will also be seeing the Rheumatologist. And maybe a Neurologist.
I'm glad you pushed to see an Endo. I am in Australia, and there are limits to what tests GPs can order, and tests that only specialists can order.
Good luck. :-)0 -
MFP has a Hypothyroidism and Hyperthyroidism group: http://www.myfitnesspal.com/forums/show/770-hypothyroidism-and-hyperthyroidism0
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I live in the UK and I hate the NHS as they are very ignorant, i don't know if its towards immigrants only, or the in general but the quality of health care still shocks me even after 5years in the country. I get all my medication and health check ups and ultrasounds done in my own country (only a developing country, not advanced as the UK) as the quality of care is much higher and they are willing to spend time on me, and sort every medical check.
Changing gp practise did not help me, I changed it 3times, due to address changes but its still the same everywhere. I am on the verge of giving up on nhs, and just go home when i need to e.g. get smear test/blood test/see doctors about every 6months. my sanity comes first, couple of plane tickets don't bother me or my wallet. That said, my advice would be paying for a private doctor. NHS won't be faster in the near future, you might need to wait 2-3months for an appointment which i think is incredibly slow, as at home i can get appointment the next day. I would be going mad from 2-3months waiting, as in your post your symptoms seem quite severe, i would not want to wait 1 more day.0 -
Hi all,
Just want to say that I am from the UK and the policies here seem different to other countries...
I am really at the end of my tether and desperate for advice and help.
Approximately 3/4 years ago I weighed 10 stone 4lb. I was fit and healthy and had no medical problems. I now weigh 17 stone 4lbs. I have not changed my eating habits or exercise regime. My symptoms now are as follows:
Weight gain (on average gaining 1lb per week at the moment even when reducing cals)
Feeling cold
aching joints and muscles
feeling tired, like I need to nap all the time
waking through night and struggling to get back to sleep
goiter, feels tights and often swallowing is difficult - fluids are easier.
constipated
breathlessness
unable to walk for long distances
anxiety, tachycardia(just prescribed beta-blockers)
Stomach problems (taking lanzoprozole)
full feeling below ears.
dry mouth, dry brittle hair and very dry skin in patches all over
I had my bloods taken a few days ago and they were as follows
results:
serum tsh 2.0
serum free t4 14.1
peroxidaze ab 4800
I have seen the doctors a lot with feeling like this, I just want my life back. I am gaining more weight and feeling worse everyday, I am concerned for more problems due to being overweight, The doctors will not entertain me at all or give me any medications because apparently the guidelines say they cant due to the TSH being normal.
I have had a scan on the goiter which showed no nodules,abnormalities to lymph nodes and the thyroid was appaently measuring normal size, the antibodies were causing the swelling.The goiter is causing problems with swallowing and feeling tight. I have seen 2 different doctors and apparently the rules in the UK for everyone is that whilst the TSH is in normal range nothing can be done, I have to wait 3 months for another blood test - then they will consider referring me to a specialist
Any help, similar stories or advice would be great to read.
I know you're struggle. I had my old Endo literally laugh at me when I told her all my hair was falling out and I went from 142lbs to 165 in a month. She said I CLEARLY was eating bad, while I was eating very well and running 2 miles a day.
Sadly, with thyroid disease, its just about finding a good doctor. With thyroid those are few and far between. I fired my Endo last August and went to see my mother's womens health doctor 3 hours away, after the doctor demanded to see me when my mother told her my struggles. She said my TSH was too high, well over 3, and put my on Armour, 30mg, last August. I've fought and struggled, worked my butt off and lost weight. Just Monday my levels are right back up, but we caught it early and my meds have been increased to 60mg
Basiclly, get a better doc. Perhaps a womens health doctor. I'm not trying to sell anyone, but there is a Facebook page called "Thyroid Sexy" and they have a massive list of patient recommended doctors. I hope you can find someone near you on there and get the help you need and deserve.
Few understand how horrible thyroid disease makes you feel, and how incredibly hard it is to get help0 -
Hi, I have Hashimoto's, and the problem might be you can't convert the T4 to T3 efficiently (which happens a lot with Hashimoto's). The end result of that is your blood test for TSH looks fine, but in reality you're not converting it...and what I don't see in your blood tests are any T3 tests. Therefore, it is possible and even probable you may have the same problem I did, that you are not converting, which they will not know unless they check your T3. T4 is what your body converts into T3, the active form of thyroid hormone, if you are not converting, the blood tests will show your levels are fine, but meanwhile you are not actually getting the thyroid hormone you need.
The goiter does NOT mean you are hyperthyroid, when I was diagnosed I had one that came out of nowhere, and I was hypothyroid, big time hypothyroid. There is NO, let me say it again, NO straight set of symptoms when you have Hashimoto's, you can have some from column A and some from column B whether you are hyper or hypothyroid, and with Hashi's you switch between both states.
For me, the answer is prescription dessicated thyroid hormone (Armour, Naturethroid) which contains T4, T3 and T2 (which is tied into apo, cellular energy), but let me warn you it is not always easy to get a doctor that will prescribe it. What you can probably get your doctor to do is add some synthetic T3 with your T4, that should solve your problem. If you can't convert it efficiently that is the way it is, but if you have one of those T4 doctors only who does not get it, give them the boot and find a better doctor who will give you something that will work for you.
Good luck!0
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