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Old 04-14-2008, 07:05 AM   #1
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Thyroid care concerns around the world - week 1

Greetings!

This post is my attempt to try something new. Everyone on this wonderful board is welcome to join in and talk and share. Care through out this world for thyroid concerns is so crazy it is nice to here what is working for you and what is not.

I hope this thread will be a place where we can discuss daily concerns and issues dealing with MDs and finding knowledge to help us get what care we need. I am going to start things off and try to keep it brief.

I am well educated and naturally a bit aggressive. I have two masters degrees and am working on a Ph.D. My life went down hill during a SURPRISE your infertal, NOT!!, SURPRISE you are pregnant episode five years ago. I still chuckle and shake my head over that one. I went from infertile one month to preggers with multiplets the next. Well it has been five years since my multiples were reabsorbed to leave me with my mega baby and I have been running about trying to find out WHY my body was out to get me. Thyroid was something I thought of.. but my TSH was NORMAL.. so it couldn't be that. I went through the specialists and they did everything and it still wasn't working. Well I got a new OB and she really thought the thyroid issue.. autoimmune in nature would make sense. So I started searching in a quest to get myself straight before trying for pregnancy 2!

After searching and badgering ang calling all my family I discover I am living in thyroid autoimmune grand central station.. Graves and Hashimoto's run rampant generation after generation! Great.. well I then go and ask to be tested. My MD told me no need.. I am too young.. starts the whole you are just lazy and a hypochondriac.. the thyroid is fine your TSH is just 1.54. Well I forcefully made him run the tests and sure enough.. HASHIMOTO's!

I took to keeping daily logs. One for diet as I followed weight watcher's, one for exercise, and one for symptoms. I noted my symptoms each day and their intensity. What treatments I chose to follow and how they affected things. I badgered my MD into getting me into one of the Top Endos in town.. only to be told.. sorry you need to wait til your thyroid dies off to be medicated.. ARRRGGGHHHH! Sorry that one still gets to me. So I wait. In a matter of 3 months. Things are bad. neurologically, cardiologically, physically.. BLAH! I was a ground in smear on the side walk just crawling along.

EVERY one here helped me sooo MUCH! Thanks Access, Midwest, and everyone else. It took going to all the individual specialists.. letting them run the gauntlets of tests to come back to the conclusion that the attacks or source of my issues were autonomic/autoimmune in nature. The only AI condition available to catch the blame was.. drum roll please..HASHIMOTO's! Well the Endo still refused to treat or see me.. so I was off to find a new MD.. a wonderful MD of.. sorry children's CDs can be evil. I found one after Midwest told me of the Armour physician locator database. The MD I found dealt with me and began to treat me on day 1. No questions or complaints.. just a WHY aren't you being treated and many disgusted grumblings. Things are much better and I hope I can help as many people through this ordeal as possible. This thread is an attempt to do so. Weekly I will start a new one so it doesn't get too long and we will go from there. I hope we all can succeed in our quests for optimal thyroid care!

MG
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Last edited by mkgbrook; 04-14-2008 at 07:08 AM.

 
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Old 04-14-2008, 07:21 AM   #2
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Re: Thyroid care concerns around the world - week 1

My take on optimal care is when you are treated as an individual and the MDs take into account the whole picture. This is not just a magic number, but your symptoms as well. There are some important things to know.

In the US the accepted normal for TSH is the be all for most MDs.. but most of these same MDs take the lab range on the lab report as gosphel and do not look further! Well in 2002 the American Association of Clinical Endocrinologists stepped up to the plate and altered the normal TSH range from .4 - 4.5 to .3 - 3.0. Many labs are still stuck on ranges from 20+ years ago! Do not accept you are normal and run off if you suspect your thyroid and the family history is there to back it up. GET A COPY of your results. By law they can not deny you and see where you are yourself. The optimal TSH range where 85-90% (depending on the study) of normal non-dysfunctional thyroid patients reside is between 0.89-1.1. MDs know optimal TSH is around 1!

Also your TSH may never go out of NORMAL range. You have to look at your actual thyroid hormone levels to be sure that things are balanced and running well. Women of child bearing years need to have Fts in the 60-80% range of normal. This is a well known and recently documented fact. However many MDs do not know it. Many do not know how to determine where you are in the normal range. So here is the formula you need to know and come to love.
Range
FT value (lower limit - upper limit)

Your percentage is calculated as follows:
[Your FT value - lower limit]/[upper limit - lower limit]*100 = %

Anything lower than 40% and you are almost guaranteed to be having hypoT symptoms. This formula will work for total T thyroid levels as well. Now if you still suspect something is up things get trickier and oftimes getting thyroid antibodies run is a prudent action. Early stages of Hashimoto's and Graves can cause no end of issues and just not show up readily in the TSH and Ft results. The antibody tests for this are:
TPOAb and TGAb for Hashimoto's
and
TSI and TRAb for Graves

Optimal care is when your TSH is around 1 (unless you are taking a T3 supplement.. then just punt the TSH) and your Fts are in the 50-80% range of normal. I hope this helps you help yourself. Now how did you all get treatment and how is it going?

MG
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Old 04-14-2008, 07:35 AM   #3
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Re: Thyroid care concerns around the world - week 1

MG, Great idea! Let us tell our stories so we will know we are not alone and thinking we are losing our minds when it is the body that is starting to betray us. My own story mimicks your in a few areas - I was told after giving birth in 1976 to my first daughter that I would never be able to have another child. From 1976 - 1990 I had no complaints other than an occasional asthma flare up but took my meds religiously. Was I a health nut? No, I came of age in the 1970s, experimented with lots of stuff, smoked cigarettes (interestingly enough never had an asthma attack that sent me to the ER until 3 months after I QUIT smoking), drank on weekends; was naturally tall and lean. In 1990 I discovered I was pregnant - as my husband swore this could not be his baby, he walked out on me then. I gave birth to Mary in 1991, now a bright, beautiful 17 y.o. - and now the symptoms started. Shortly after giving birth to Mary I started to have periodic spells of dizziness, which was explained by low blood pressure and sometimes low blood sugar. No treatment given, just an explanation of how I was feeling. It didn't get really bad for another 3 years - by time Mary went to pre-K - I was a panic stricken mess who couldn't cross a two way street without feeling like I'd faint. So I was sent to a shrink. Given SSRIs, which I took all of one week before waking up and wondering why there was a baby crying and why wasn't someone trying to stop the baby from crying - It was MY baby. I suffered for years, buffered by tranquilizers (itty bitty pieces of valium I would put in my mouth and chew so they'd work fast) and managed to keep my job. I was flipping out on the subway, using most of my discretionary income on cabs to/from work or trying to work late enough where the company paid for the cab; I had visual disturbances; i felt like there were always hands around my throat. I was sent to a neurologist - discovered I had vestibularitis which causes me dizziness if I turn my head to the side. I still have uncontrollable panic when I am in wide open spaces; partially due to 911 I suspect. And even with a strong maternal family history of thyroid and endocrine issues, my dry skin, hair/nails breaking off; bouts of constipation, fatigue, incredible weight gain, eye puffiness - this year after spending two years at the gym and still barely maintaining a weight gain of 80 pounds over 5 years, I have not lost a pound. I had food journals and exercise journals. It was suggested I was an actress, I wasn't writing everything down, I was a hypochondriac and when the unspoken words "I think you are lying" kept popping into my head about what they were thinking, I had it: I told the PCP I don't care that I've been with you since 1990 - if you won't take me seriously, knowing who I was 18 years ago, maybe it's time I shop another primary. Then my resting heart rate (but rather normal BP) presented and he suggested I see an endo. The problem in NY is to find a doctor, any doctor who has only ONE location. My primary is in my location 2 days a week. The endo is here the same two days; the other days they are in other boroughs. We are waiting for the results of the Hashi antibodies and cortisol reading from 24 hour urine. Endo also asked if they had enough blood for hepatitis or something liver related since those were a few points out of range on the high side. But she is of the mind that if the TSH is normal, it is not your thyroid that is the problem. Exactly what my mother heard for 30 years.

I'm rambling. WHAT DOES ONE HAVE TO DO TO GET DECENT MEDICAL CARE? Did the Hippocratic Oath get taken out of the medical mix? Just tired of being sick and tired and oh yeah, a fat lazy liar.... Going to get my girls tested for more than TSH as well and soon. No one should have to suffer in this manner without a resolution or treatment.

Here's to all of us who are fighting for our wellness.

 
Old 04-14-2008, 10:07 AM   #4
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Re: Thyroid care concerns around the world - week 1

Mine is long, as my issues have been life long-
Had asthma as a little girl, hyper type child. Suffered with anxiety even in kindergarten, insecurities. Teens, anxiety, a bout of mono., and the 70's experimental stuff. Later in teens got a rectal fissure, needed surgery. At 19, had my first child, almost 10lbs. Had severe post partum depression and weight loss. Panic attacks started and depression continued. Suffered thru this period and was told "its all in my head", therapy did not help at all. Had my 2nd child, another 10lb baby! ( have read large births are a sign of thyroid problems). Continued to suffer with anxiety/depression, abdominal problems, chronic urinary infections, they were horrid!!! Divorced, started having abnormal pap tests and pain, spot bleeding. After a yr of suffering was told I had a 50/50 chance of full blown cancer. Had a hysterectomy, leaving one ovary at age 25. Continued on alone, working and not feeling well at all. A yr later had severe urinary pain, found large cysts on my urethra! Surgery again, then weeks later, incision broke and bleed profusley. More surgery. Got thru it and continued work and raise 2 babes. A couple yrs later after suffering back pain, back gave out on me unable to walk. Had some chiropratic treatments and pain meds, a little help and kept going for many yrs with similar situations of back giving out for a week of unable to move. Several yrs later, back got worse and didn't let up, found I had 2 lumbar discs herniated and several bulging. Surgery followed with short term disability from work. Kept going, still never feeling "normal", anxiety/depression always close by along with SEVERE insomnia, plagued me all thru the yrs. Now having gone thru 2 divorces, struggled to make ends meet. Started having abdominal pain, found my last ovary had cysts that needed to come out. Another surgery followed. Was able to return to work the next week, kept going on. Now in surgical menapause, feeling like crap and still now answeres to why this is happening? The urinary infections continued, the back pain progressed, the insomnia was only helped with pills, and went thru all kinds of diagnostic testings, some painful! A couple yrs later my upper back, cervical gave out, 3 more herniations! surgery again, this time putting me out for the count from my career. Now I have a back with fusion in my neck, several more bulging discs, lower lumbar one disc totally gone. Then a few more yrs later, mammogram shows calcifications, micro! biopsy followed and needs watching from now on. Depression/anxiety continues, knowing there must be a reason to all of this??? Got the same old ranting from doctors, its all in my head, must be bipolar, etc etc. Therapy over and over of no help. Finally, had enough and demanded from a shrink to find what is causing all of this! he agreed and was the one who ordered the lab work that diagnosed my thyroid and hashi's!!!!!! Not ONE doctor ever suggested thyroid, as my tsh levels ran within range, high 3's and low 5's. Well now my thyroid is totally destroyed from hashi's and waiting for my levels to get normal. I will never trust another doctor, I will use their ability for testings and do my own studying. Right now I have a nodule which was recently biopsied and benign. Not sure what the future holds for that, but, I will be on top of it!! Doing all I can now to get needed testings : will be having another colonoscopy next month, oh yeah, had a couple polyps on my last colonoscopy forgot about that, urgh. My mammogram is this month and then I think I'm covered for a few yrs!!!! It's been a long road, but I refuse to give up!!! I just knew in my heart something wasn't right, I'm a strong lady, very independant so guess that's why they brushed me off so long? Hope the next half of my life will be the best!!!!cj
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Old 04-14-2008, 02:41 PM   #5
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Re: Thyroid care concerns around the world - week 1

MG
So glad to see this thread up and running, this is going to help us all so much.

I can see alot of us coming on here we are all part of the thyroid family, don't matter where we are we are all as one!!

I would just like to say a BIG THANK YOU hun for your help and support to me and other's...Mad Maz

 
Old 04-14-2008, 05:59 PM   #6
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Re: Thyroid care concerns around the world - week 1

Well I am hoping that this will be a weekly post where we can ask questions of how to get this done, what do I need done.. etc. So many around the world have different hoops to jump through. It would help us all learn the different tacks one must take to get adequate care. So Maz and all you lovely, classy English ladies.. join us. The crafty and canny all come and share. If you just need to vent or voice your complaints. That is part of daily care.

MG
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Old 04-15-2008, 01:50 AM   #7
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Re: Thyroid care concerns around the world - week 1

Hi, thanks for this mkg.

My story is from the UK, so we have a different perspective on what happens once the diagnosis happens.

I was lucky, although it still took a while to get the diagnosis. I had been feeling 'blah' for a while and saw my GP he ran tests for lots of stuff including my thyroid. The tests came back 'within the range'.
I went away and 18 mths later couldn't cope anymore, was putting on weight, always tired, felt awful and was always catching something, particularly throat infections. I was also not getting pregnant. My GP thought I was depressed but ran the thyroid function tests again. Lucky for me someone in the lab took note of my previous results and noticed a big change, even though the results were still in the 'range'. Off their own bat the lab ran an antibody test (I'm not sure which thyroid antibody though). It came back as in excess of 2500 when the range was 0-50. My GP realised I had autoimmune thyroiditis and I was started on thyroxine. You'd think it would be all happy sailing then, but no. Dose increases have to be fought for, no notice of T3 is taken here and if hypothyroid symptoms still cause a problem - tough.

After 10 years of living so-so, I'd had enough, I was having to have steroids increasingly often as my body couldn't cope with only getting thyroxine. I sought my GP's help and he nicely agreed to run Free T3 tests. My T3 and T4 results were inconsistent (28% and 105% of range). Unfortunately here in the UK there is little my GP can do, he doesn't want to be brought before the GMC. I need T3 but he can't prescribe it (as my T3 is 'within the range'), there are a few that can but they are few and far between. I've done something that I wouldn't really advocate for the majority: I've now taken to importing Armour. For me it's working, I feel alive properly for the first time in years. I'm not totally adrift though, my GP runs FT3 checks for me when I ask.

I would say the best defence for your health is to research as much as you can about the optimum treatment you can have, this board goes a long way to providing that help.

 
Old 04-15-2008, 05:55 AM   #8
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Re: Thyroid care concerns around the world - week 1

Thank-you Cat! We have many from England in your situation. It is so hard to advise them how to get the proper treatment. Maybe you should share your MDs name in case he is close to other sufferers. At least he runs the T3s when asked. Having to go out on you own to get a source of T3 is impractical. Also he shouldn't fear board review for treating you as you need to be treated. I am glad you are beginning to truly feel normal. I hope that things continue to improve for you!

MG
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Old 04-15-2008, 09:56 AM   #9
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Re: Thyroid care concerns around the world - week 1

MG
Thank you for starting this thread. I'm sure many of us will be posting here for answers as well as for comfort knowing we are not crazy. I have had it with the MD's also. They say nothing is wrong. My last TSH was 1.63 the lab range was 0.40-5.50mU/L

I have started to see my chiropractor who is very into womens issues. She sent a sample of my hair in for a Hair Tissue Mineral Analysis. Well what that came back saying was that I have a slow oxidation rate, my body is in the exhaustion stage,diminished cellular adrenal grandular activity and cellular thyroid effect that is outside the optimal range. Also that my body is perdominantly in a parasympathetic state( which is unhealthy). my immune system is impaired leaving my liver and kidneys in a trend for stress. Slightly decreased cell permeability. Patterns that may contribute to feeling of frustration,resentment or hostility. A low sodium/potassium ratio often associated with chronic adrenal, kidney and liver stress which in turn is often associated with these emotions.

I just summed up the most critical areas the report is quite long and I don't want to bore everyone out of there mind. I have been feeling like alot of the other posters here and I can identify with a lot of the symtoms.

The treatment she has started me on was first I did a liver detox with a supplement called NutriClear and now I am taking Drenatrophin PMG supplement for my adrenals and Thytrophin PMG for my thyroid and also some others for intestinal issues.

I would like to know if any one has tried the natural route with these supplements or others if there are any. If so did you get any results and if so how long would be a good time to see any improvements?

I am trying to figure out how to get more rest and still go on doing what I have to do. I do go to work , cook for my family and sort of keep up the house (not anywhere near how I used to keep it up). Actually when I am home I don't feel like I accomplish very much and it is so hard to get started to do anything, I keep thinking maybe tomorrow but when tomorrow comes I fell the same way.

Any answers would be appreciated.

Maggie

 
Old 04-16-2008, 08:27 AM   #10
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Re: Thyroid care concerns around the world - week 1

Hi MG and everyone eles too, i think this is a good idea to set the thread up in this way,and cat i noticed your from Wales and yes you are correct that does seem to be the way things are in England i was the same i kept going to the GP for some years and i know they did my TSH in 2004 and it was 3.4 i didnt see these results until july 2007 when i was diagnosed at TSH 4.49 and ft4 13.6 then my TSH was tested again 2mnts later and it was 3.21 and no ft4 was tested this time then tested again 4mnts later and TSH was 4.04 ft4 was 17.2 and tested again 2mnts later in march 2008 TSH was 2.69 and no ft4 done so i am due to be tested again around july 15th and that will be with a thyroid register have you ever heard of this my GP has refered me to this and apparently they will send me a form to have my bloods taken wherever i want to and they then send them off to them with this form so how i'm supposed to benefit from this i dont know my GP said i will get second to none care that way so its a wait and see situation with that. i am at the moment taking 75mcgs of thyroxine and still feel as if i'm up one day and down the next and i have started to record my daily health problems i also have oral allergy syndrome and allergic to certain chemicals and perfumes,dustmites and at the moment awiting tests for latex, i have allergy to silver birch trees, hazel nuts different fruits, potatoes. I also have regurgitation of the heart valve where the blood flows back untill it gets so full and makes me have palpitations then gives me a big thud and makes me cough then i'm ok untill the next time i now wonder if with my thyroid started way back in 2004 or even before that as it looks like it fluctuates and if this could have caused my heart problem as i feel my thyroid went undiagnosed for a long time. if anybody has had similar problems it would be much appreciated to share these symptoms. love Applepip xx

Last edited by applepip; 04-16-2008 at 08:37 AM.

 
Old 04-16-2008, 08:37 AM   #11
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Re: Thyroid care concerns around the world - week 1

Hey Apple!

I have the heart thing to.. I get the thug and a hiccup! It is like clock work. I have one sharp stomp the rat type hiccup every hour as my body tries to rebalance out my O2 levels. One more thing in common. I am still betting the farm you have Hashimoto's. I wonder what hoops and loops you need to jump through to get a simple TPOAb test run. Maybe if we get big enough despite exercise we can sit on our MDs and make them right out the lab orders or experience what it is like to just sit as a hypoT.
[url]http://www.healthboards.com/boards/showthread.php?t=595996[/url]

This post i have been doing research for and it is so hard to see so many suffer. This is military MAN that has Hashimoto's and a TSH above 3.. he is expected to function in a war zone like that! Ugh.. sorry venting. Welcome and share and vent.

MG
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Old 04-16-2008, 08:44 AM   #12
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Re: Thyroid care concerns around the world - week 1

HI MG i have read the millitry mans post i think it stinks that hes expected to carry on that way poor love him, yep you and i have so much in common dont we babe but i will get that antibodies test, i'm going to ask my GP about it i was going to do it today but put if off, i will maybe do it tomorrow if they say no i'm doing it private i'v already started to search some places out to do it and i feel you will be right hunny love Apple xx PS MG what actually does Hashis mean xx

Last edited by applepip; 04-16-2008 at 08:45 AM.

 
Old 04-16-2008, 08:49 AM   #13
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Re: Thyroid care concerns around the world - week 1

Hashi's is slang for Hashimoto's thyroiditis. The kill all be all hypothyroidism causing thyroid autoimmunity disorder.

MG
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Old 04-16-2008, 08:54 AM   #14
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Re: Thyroid care concerns around the world - week 1

ok thanks MG i thought thats what it was i just needed you to pep me up i dont want the GP to try and make me look stupid as if i dont know what i'm saying thanks babe xx Apple Sorry MG i meant to tell you this afternoon i have got this full feeling back in my throat and have also had a sluggish day you said that would come together did'nt you xx

Last edited by applepip; 04-16-2008 at 08:58 AM.

 
Old 04-16-2008, 09:24 AM   #15
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Re: Thyroid care concerns around the world - week 1

YES, MA'AM. When you go hypoT because your t4 adn t3 levels are not right for you.. the pitutary calls to the thyroid by way of TSH mail. Hey, Thyroid.. need some more T4 get cooking! The thyroid sighs and thinks about it.. then tries to do its job. In Hashimoto's patients the thyroid activates the TPO enxymes and begins to make and release T4. It is at this point our lazy and bored antibodies.. TPOAb and TGAb perk up and yell, "BONZAI!" Or whatever they scream as they charge and attack. It is at this point that the thyroid feels full and aches. It is classic thyroiditis.

MG
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Last edited by mkgbrook; 04-16-2008 at 09:24 AM.

 
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