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Old 01-31-2013, 09:36 AM   #1
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Long post - I'm feeling desperate!

Hey everyone! This is my first post. I can't seem to post correctly, so I'm giving it another try . I've been lurking and learning as quickly as possible the last few months, and I'm already grateful for the insight I've gained from this board. I've been struggling for a while with specific symptoms, and all of my research keeps pointing to hypothyroidism, possibly Hashi's. I'd love any insight you may have on the subject! I just turned 35 and I'm a woman.
I just reread this all, and it is ridiculously extensive!! Please forgive me!

So, my symptoms:

Exhaustion
-constant, complete exhaustion, major fatigue
-can't sleep, then can't wake up in the morning. I feel like early-late morning is when I get my most deep sleep
-I can't accomplish anything until evening/night- this is when I get all of my work and cleaning done
-no energy, tired and weak
-feel worthless and have lost ambition (I was on the verge of starting my photography business but have put it on hold until I get answers)

Hair Loss
-200 each shower, then more throughout day (I've suddenly realized this week that I've lost maybe 30-40% of my hair!! My ponytail is very skinny all of a sudden). It's also suddenly very dry and breaking. My hairdresser wanted to know what the heck I was doing to it, and why I had taken a razor to a chunk in the back (I hadn't, of course)
-clumps of missing eyelashes, coming and going since Sept or so (probably much longer, but stood out as not being normal around then), when one eye regroups, the other loses
-thinning eyebrows w/ bald patches, one is much shorter than the other
-circular bald patch in pubic hair, between the size of a quarter and half dollar, getting larger recently
-bald patches at my temples and I a few weeks ago I realized I have huge bald patches behind my ears, and my hairline back there has gotten suddenly higher...more and more from one week to the next.
-I've realized I have alopecia areata, which is autoimmune (this further supports my Hashi's suspicion since people with AI disease tend to have more than one
I'm scared about the fact that I can't know how much hair I will lose.

Water Retention/edema/weight
-I've been on a 1200 calorie intake since Sept (raising it to 1500 when I was worried about eating too few calories). This has me on a 1-1.5 lb loss p/week track, which isn't happening. I track every bite I eat, and have cut out almost all breads and treats.
-I've worked out 4-5 days a week, doing Jillian Michael's Ripped, and recently switching for a while to the treadmill, 30-60 minutes speed walking and running, burning 400-500 calories.
-I've gained 20 lbs
-my face and eyes bloat up and swell off and on for a few days or a week at a time, then a day or two off, then I swell up again.
-my hands and feet swell, are numb and tingle, and I have carpal tunnel. I can't wear my rings most of the time
-tarsal tunnel, painful feet

I lose my balance when I walk- I always bump into walking buddies, or fall off the treadmill

Libido
-total lack though I weaned my now toddler 6 months ago, and am in a wonderful relationship with my husband. This concerns me!

I'm always freezing and wear socks to bed. However, I can't tolerate the heat and sweat a horrific amount, to the degree of soaking my clothing and hair, which is mortifying. Everyone else is always comfortable when I am cold or hot.
My body temp runs very low, and my basal temp stays around 96.1-96.4 most of the time. I just started sweating when I'm freezing, which seems bizarre, and I'm disturbed by sudden strong BO which I have NEVER had in my life.

My nails are peeling and breaking and my skin is out of control dry.

I've had horrible Anxiety over the last few years, followed by bouts of depression. I've almost become housebound. I'm seeing that I can't tolerate stress- my chest tightens and I start to feel panicky, even for little things like my kids all flipping out at the same time. I wonder if my adrenals are effected in addition?
So many of my symptoms I chalked up to pregnancy and breastfeeding (I've had 3 sons in 6 years), but now that I'm done, everything has worsened rather than improved. I've had time periods that now seem like a pattern of flare ups in hindsight. Two major times- one before my wedding. I had a sudden case of full body urticaria, which I thought was a reaction to the Z pack I had been on for pneumonia. I gained a bunch of weight and had to starve myself to get into my wedding dress! At that same time, pineapple started giving me a hives reaction as well. The second time was 2 years later, a month or so after the birth of my first child. My blood pressure jumped and I suddenly swelled up 20lbs. I had heart palpitations and night sweats. My ob/gyn at the time wondered if it was post-partum preeclampsia, but I now wonder if it was postpartum thyroiditis. I also have endometriosis and ovarian cysts, and have had such heavy, painful periods since I started that I was put on the pill at 15 to even it out (which it didn't). I had an echocardiogram before I had children due to strong heart palpitations- it was fine. I found that coughing will reset it.
I feel like this summer/fall I had another flare up. I had just weaned my baby and it seemed like i got thrown off hormonally. I felt anxious and paranoid. I was sweating buckets, my hair started to fall out. My eyes were so gritty and painful that I had to switch from monthly to daily contacts, and my eye doctor said my hormones were all screwed up.
I have asthma, geographic tongue, and I've had pneumonia and bronchitis multiple times a year my whole life. I have a family history of thyroid conditions, thyroid cancer, lupus, diabetes and arthritis.

In a couple of weeks I will be seeing my 4th doctor since the Fall for this. When i expressed alarm and concern for my sudden and large weight gain, the first one (in Oct) told me I was obese, even though I had just gotten back into my size 12 jeans from 14's. I didn't feel comfortable with her, so I saw a different doctor in the practice (in Nov).
At the time, I didn't know I had pneumonia and was very weepy (which is unlike me) when I described my concerns. She immediately decided I was depressed because my TSH was "perfect." I had read about the fact that TSH wasn't the end all and be all, and pushed for more extensive bloodwork. She told me that she wouldn't approve it so that it couldn't be covered by insurance (which seemed a bit vindictive to me). I said that, since I have a high deductible health insurance, I'd be paying for it all out of pocket, anyway, so bring it on. She told me my thyroid was perfect and gave me the name of a psychiatrist. I told her that, if anything, I was discouraged and alarmed by my symptoms, rather than mentally depressed....i felt that there was there was a difference between having a hormonally depressed mood and straight up psychiatric depression. She said they were the same thing. She reluctantly ran the blood work on my second visit, and was so irritated with me that she stomped out of the office after only 3-4 minutes (I paid at least $100 for that quality visit).

Lab work from November '12:
TSH: 2.69 (.35- 5.00) it was 1.32 in 2002
T3Free: 2.9 (2.3- 4.2) 31%
T4Free: 1.0 (0.8- 1.8) 20%
TPOab 48 (<61) I'll be interested to see if this number has risen since then....it seems to be pretty close to the cut off and it almost seems at this point that antibodies are antibodies, especially since I've developed alopecia and urticaria, both AI...and geographic tongue is suspected to be AI as well.
Tg ab 23 (<61)
B12: 270 (211-911) this still seems low to me
Vit D: 56 (18-78) this seems fine?
She didn't do a test for anemia.

In Jan, my heart rate was 52 (I'm NOT an athlete ), and my bp was 120/90, it's usually perfect, and the above number is more reminiscent of my high bp post partum.

I was able to switch Dr's offices last month (Jan) and was seen by a new Dr. By now I had done extensive research and had educated myself on the different T's and Frees and so on as well as optimal levels and antibodies. This new doctor listened very carefully and checked me over thoroughly, which was a HUGE step in the right direction. I felt neutral/positive about it, though a couple of little things didn't sit too well with me. First of all, she didn't seem to have experience with this and didn't know what she was looking at with the lab work. She did ask me how I felt about the results and I geeked out on her a little bit and explained a few things. Then, when I was telling her about my extreme hair loss, she said it was normal for hair to thin as we age. I was a couple of weeks from my 35th birthday. She wanted to see me in a few weeks for more bloodwork, which is a positive.
At the risk of burning that bridge, which I really don't want to do, I took an appointment with a Naturopath ND I had been trying to get in with. They said they basically specialize in this, so my feeling is that, since I have to pay for every visit and every batch of lab work, I'd love to see someone who knows something about it, rather than have to educate my doctor. I'm postponing my PC appointment for now and switching gears toward the naturopath. It baffles me that my symptoms have all been ignored and everyone only sees the TSH. I'm so cautiously hopeful about this Naturopath, and am bracing myself for disappointment.....
I've kept a thorough notebook of my symptoms and lab results. The more I learn, the more I realize that this is something I've struggled with for possibly almost 20 years! I just want to be an active, fun mother to my 3 little boys, rather than a drained dud!

 
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Old 02-02-2013, 07:24 PM   #2
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Re: Long post- I'm feeling desperate!

Hi Stinak, well from reading your post it seems to me like you are definitely doing all the right things with regard to educating yourself on thyroid. Your TSH is higher than normal and the lab ranges used are outdated for this. 1 is what I believe most normal people have.
In addition to visiting your naturopath for thyroid related issues I would also get them to look at your adrenals. You have had 3 children in 6 years and pregnancy puts they body under enormous stress not to mention looking after them! (I have 4 and it is very demanding!)
I would also consider finding a thyroid savvy doc. Look for someone who prescribes dessicated thyroid, as these guys generally take the whole picture into account. But healing adrenals (cortisol and DHEA should be checked) if they are out of whack can go a long way to helping thyroid issues. In my own experience, endo's are an expensive waste of time! All I ever got was you are menopausal and depressed (I am neither! As proved by my current thyroid savvy guy!) I hope you find some answers soon and keep educating yourself, it is your best weapon! Good luck

 
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Old 02-02-2013, 08:06 PM   #3
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Re: Long post- I'm feeling desperate!

I wish that I could help with your thyroid questions but I was just diagnosed myself so I'm still learning. My husband developed alopecia areata and had 2 bald circles on his head. One was about the size of a half dollar. The medication the doctor gave him was not helping. A friend suggested organic flax seed oil. He started taking it everyday and within a few weeks his hair grew back and he's never had a problem since.

 
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Old 02-02-2013, 10:55 PM   #4
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Re: Long post- I'm feeling desperate!

Uh-oh. Be careful with flax seed products. The oil may be okay, but flax seed is a potent thyroid inhibitor. I had a horrendous experience with flax seed just before my thyroid diagnosis was made.

Keep plugging away for the thyroid diagnosis. The high-normal TSH, weakly positive TPO and Tg ABs, and low-range free Ts all spell trouble. Doctors aren't taught that any of these signs mean anything. They're taught that only TSH counts, and that it has to be above 10 to cause symptoms or need treatment. The smart ones... The ones who bother to educate themselves further once they leave med school... Eventually figure out that there are many shades of thyroid disease, some less overt than others.

This is just my humble opinion, take it for what that's worth. But I have found female doctors are often on bigger power trips than male ones. I believe it's a woman's nature to "follow the rules" without deviating from them one iota, so that everything they learn in med school is gospel to them. The 'facts' in those textbooks are the only thing that matter. They accept it all without question. Furthermore, they don't like to challenge the oversight of their practice partners, the AMA, and other higher powers by using treatment guidelines outside the standard. Male doctors - again, JMO - are more willing to push boundaries and risk treating the 'subtler' cases of hypoT. Of course, there are good MDs of either gender, in every specialty (even endos). But it can be a huge challenge finding them. We just have to look harder.

Please let us know what the naturopath says. Wishing you the very best of luck!
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Old 02-04-2013, 03:30 PM   #5
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Talking Re: Long post- I'm feeling desperate!

Quote:
Originally Posted by Surfing4answers View Post
Hi Stinak, well from reading your post it seems to me like you are definitely doing all the right things with regard to educating yourself on thyroid. Your TSH is higher than normal and the lab ranges used are outdated for this. 1 is what I believe most normal people have.
In addition to visiting your naturopath for thyroid related issues I would also get them to look at your adrenals. You have had 3 children in 6 years and pregnancy puts they body under enormous stress not to mention looking after them! (I have 4 and it is very demanding!)
I would also consider finding a thyroid savvy doc. Look for someone who prescribes dessicated thyroid, as these guys generally take the whole picture into account. But healing adrenals (cortisol and DHEA should be checked) if they are out of whack can go a long way to helping thyroid issues. In my own experience, endo's are an expensive waste of time! All I ever got was you are menopausal and depressed (I am neither! As proved by my current thyroid savvy guy!) I hope you find some answers soon and keep educating yourself, it is your best weapon! Good luck
Thanks so much for your insight and reply! I agree with you re: adrenals. I've been wondering if this is an issue as well. It would appear that I definitely could have some adrenal fatigue symptoms- possibly severe from what I can tell. I'm still at the beginning of my research into that, and am wondering to what extent adrenal fatigue is accepted by the mainstream doctors? I'd imagine that the naturopath ND I'll be seeing may be aware of AF- I'd like to explore this possibility as well. The fact that I have spent large chunks of my life on corticosteroids as well as am going from one case of bronchitis or pneumonia to another my whole life are red flags for me. Also, I feel like I've been hit by a truck for days after a busy day of errands to Costco and such. Stress exhausts me to the point of pain, and I feel panicky and overwhelmed with even small arguments and my kids acting up. I'll be interested to see how my appointment goes on Feb 12th!

 
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Old 02-04-2013, 04:21 PM   #6
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Re: Long post- I'm feeling desperate!

midwest1,

Thanks so much for your reply and encouragement! It's strange how connecting in even the slightest degree with others who actually understand and "speak the language" can make this all feel a little less lonely and scary. I have a fantastic group of close girlfriends who know something is going on and believe me, but this forum takes it one step further. Holy cow!!! Flax seed!!! I eat tbs or 2 daily on my Greek yogurt in an attempt to do something healthy. Darned if you do, darned if you don't, huh?!
I'm sure it depends on the individual Dr, but your description sums up my experience so far, unfortunately. With the young NP who insisted I was depressed and would only give me the name o a
Psychiatrist, I remember the actual moment I saw a switch go off in her eyes. She caught on that I had been learning about different possibilities, including thyroid conditions, and it ticked her off. She seemed threatened or offended....and I was absolutely low key and polite. I had naively thought my health would be tackled as a team, since my wonderful former Dr had been like this. She was irritated that I wouldn't just take her depression diagnosis and go on my way.
Rather than falling into my old people- pleasing habits, I realized that I needed to find someone I was comfortable with at least, since we essentially are hiring these people to do a job. I didn't need her to be my friend.

 
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Old 02-04-2013, 06:07 PM   #7
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Re: Long post- I'm feeling desperate!

Hi Stinak, docs don't look at AF at all unless you have an incredibly good one or you test with zero cortisol! I am guessing your naturopath is a better option. I too had bronchitis and pneumonia for the first time ever, along with repeated sinus infections, throat infections, strep quinsy blah blah all in one year! My doc put me on adrenotone to support adrenals, resist x (both metagenics brands, resist x is chromium and other stuff) as well as zinc magnesium calcium fish oil. Healing the adrenals seems to be a long road though, for me anyway! I showed low in pretty much everything, cortisol is still too low but working on it as dont want to take steroids.
Just an additional suggestion but I have very low iron and find it very hard to maintain iron and vit D, my iron was borderline low last time which is best yet but I suspect it has bottomed out again as all hypo symptoms back along with heart palps so something off and I do think its iron causing it this time. Have you had this checked? Particularly with pregnancy breast feeding possible adrenal issues etc going on.

It is definitely a big factor in all of this as well, work with your naturopath to go through the adrenal possibility but get ferritin, iron, saturation etc checked! With the cortisol testing perhaps suggest the 24hr saliva test as this is a better option, my guy still does it by bloods twice a day and it is almost good in morning but very low afternoon which goes hand in hand with AF apparently! Good luck on the 12th, post back when you have your appt if you can

 
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Old 02-04-2013, 09:07 PM   #8
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Re: Long post- I'm feeling desperate!

You poor thing!! YOu sound so much like what i've been dealing with minus so much hair loss but most of your symptoms are dead on to mine and i'm 49 and just found out I have adrenal insufficiency and needed armour thyroid medication and do not have any of the other hormones I need either.

So.. long story short.. You are so much more better off going to the Naturopathic Dr or one that specializes in hormonal imbalancements and you can go to different websites that make bio identical creams and there's usually a list of practitioners in your area that know about the problems you've just discussed.

Basically, you cannot treat the Thyroid until your adrenals are stronger and if you don't do that usually you'll end up feeling so much worse and symptoms can become very extreme and cause your adrenals to give out basically which causes the weight gain or loss, extrrrrrrrreemeh!~ fatigue and/ or cold feet and hands and just not able to regulate your temperature at all.

You can start taking your temperate daily through out the day and see what it is.. if its all over the place then your adrenals are shot.

You can then do a hormonal panel for your estro/test/progest/ and see how the ratio is on those babies and do that day 21 of your cycle to get a baseline since having disfunctioning adrenals will create havoc in all of your hormones.. and it also regulates fluid in our body, thus the water retention and weight gain from that.

It's such a complex web of interwoven structure that the endocrine system is all in sync with each other or at least should be and the things they say the thyroid is responsible for, the adrenals are responsible for many of the same things.. but even more so. You need that working first and foremost and many times they have to be treated simultaneously to avoid you from getting weaker and sicker and light headed and hypoglycemic..
Yes, if you do not treat the adrenals at the same time or before the other issues you can start to become hypoglycemic and feel the need to eat more than necessary thus putting on the extra poundage due to your metabolism all out of whack. Speaking from personal experience within the past week of course.

So I was so so messed up. about an hour or two maybe of energy on some days.. other days none at all.. legs felt like cement and the mental fogginess was horrible. couldn't think straight or find something that i am looking for that I just had in my hand and now its lost. I lost my 400 progressive glasses. oh yeah, fluxuating sugar levels and having your electrolytes all off will cause vision issues, dry eyes, burning eyes all kinds of optical issues along with heart palpitations and of course HBP and/or low blood pressure, all do to the aldosterone that the adrenals make or doesn't make enough of.

So we crave salt due to not holding onto enough and peeing it all out. so that creates the imbalance of salt vs potassium so avoid the bananas right now until you figure this stuff out.

It's not as difficult as it sounds once you start to just treat the main organs and work your way up.
I started with thyroid and crashed horribly.. found out through my own research that you NEVER treat in that order. So I read that many holistic Drs treat with hydrocortisone along with the armour so I didn't have any of that but did have 5 mg of prednisone which is equivelent to 20 or 25 mg of hydro and that helped tremendously. didn't have the horrible hypoglycemia and head rushes, I can now take a bath and don't feel like i'm going to pass out or i'm done for the day and found out that the reason we can't take hot baths or showers is due to our inability to regulate our body temperature from sluggish adrenals and top that with the thyroid issue and it just makes our hypothalmus work overtime with organs that are already broken causing a major swing of fluids trying to cool the body down thus causing major lightheadedness and complete loss of energy.
So what has helped me thus far and i'm about 2 weeks into it.. 20 mg of hydro for the lack of cortisol/ had a 1 hour stimulation test at the hospital that showed im deficienct, started armour about a week after treating adrenals.. 15 to 30 mg daily and also started more D3 since that hormone (basically it's very close to one and the body recognizes it as such) was being zapped as well as my inability to balance insulin and create glucuse from glucagon?? or something like that so it can get into our cells to create ENERGY.. without the abc's of hormones working properly we cannot get any energy output. like a broken light fixture that just won't turn on due to faulty wiring. it has all the parts there but there's a major short somewhere.

We can find that short by a little trial and error and I think i'm on the right track cause this is my 3rd day in a row that i've had a nice long day of activity and i'm still writing this post and feel pretty darn good!! It's kinda crazy but I'm thinking it is all starting to fall into place.. slowly but surely.

Don't have all my answers yet but at least i'm seeing progress.. I pray you will to but you have to be very forthcoming and find someone that will listen to you and do the needed hormonal panel and start you out on a therapeutic dose of cortisone along with the proper supplements for adrenal and thyroid support.

in my humble opinion. And by the way.. It really doesn't matter what sex the dr is, I work in the medical field with drs all day long when i'm able to work and they are all the same.. if they don't know about the illness they will blow you off period. and unless it is extreme cushings or the other extreme addisons.. they don't want to deal with it for the first reason... they need an ICD 9 code for everything and it just doesn't fit in the box the medical billing has created for diseases Drs are to treat for. there is no in between on this one.. so its time consuming and a pain in their butt and they just don't have the time to play guessing games and work a little harder to find the answers.. it's just the way they've been trained unfortunately.
of course if you find a dr that you can build a repore with and ask politely for things that you've read up on, at times that person may work with you at that point and order this or that but they will then tell you that you'll have to follow up on it with someone else who knows about the disorder cuz they're clueless.. basically.
take good care and keep researching...

 
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Old 02-05-2014, 07:59 PM   #9
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Re: Long post- I'm feeling desperate!

Hi beachbum75, your husband's situation seems alot like mine. I was just diagnosed myself with a perfectly round quarter size patch on the back of my head. My daughter noticed it. Did your husband's patch come out seemingly almost overnight or did it progess to that size over weeks/months? How much Flax Oil did he take per day? Does he still take flax oil? Has there been any recurrence of the condition? Thanks so much for any responses you can provide.

 
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Old 05-26-2014, 05:33 AM   #10
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Re: Long post - I'm feeling desperate!

I had many of the same symptoms. Synthroid got my numbers in line but I still had leg pain/cramps, tiredness/lethargy etc...

Magnesium supplements have helped IMMENSELY.

BIO: graves hyperthyroidism, 2 rounds of radioactive iodine, 200mcg synthroid daily.

Let me know if it helps.

 
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