Friday, April 28, 2017

Do you know what you might be missing?


Since I mentioned sharing my latest health information and update a couple of weeks ago, I've been in the process of chickening out on writing this... because I'm still a work in progress. What I'm going to share is what I've learned from research on the Internet, (and in speaking with my doctor). I've been digging on numerous reputable sites; hospitals, specialists, drug trials, research studies, and also on patient forums. I like to think of myself an informed patient, who doesn't sit there passively believing everything I hear. I actively check information and facts and opinions; important health information, and drugs I've been prescribed. But unfortunately, I had been lulled into a false sense of security over the years.




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I had unknowingly accepted previous doctor opinions and statements concerning my health, even though I knew I was still sick and wasn't finding the answers that I really needed. But I've had a "door of enlightenment" open for me; prayers answered. ( I know that sounds sort of kookie, mystical and "out there", but that's how I feel) so I'm now on a mission, and I want you to be aware of something that I stupidly took for granted. You may know this information, and if you do that's wonderful, but I didn't know this, so I'm betting there are a few of you out there that don't know it either. I'm aware that I may have to add on or amend this post at a later date as my own experience becomes more clear. But for now, I want you to read what I've been living through for the last almost 2 years.






Try to imagine "fatigue" that you can barely drag yourself out of bed in the morning. You're up for a few hours and then you're ready to go back for a nap. You have limited physical energy, motivation, and libido. Your muscles and joints hurt. You think about exercising (maybe that will help), but your arms and legs get weak, then you feel drained and worse than you did before. Your dry brittle hair is falling out, you're gaining weight, or can't take it off, no matter that you're eating healthy and taking the usual vitamins and supplements.







Your digestive system is your constant "enemy". You're lactose intolerant, constipated no matter what you do or take, and you retain fluid... even in your face (puffy eyes, and bags that won't go away no matter how much $100 eye cream you throw at it). Your skin is thin, dry, and you're often cold. Your hands and feet feel like ice-cubes, especially when you go to bed.







Your memory is scary, you forget where you put things, walk into a room and don't know why you're there, and don't remember conversations. You try and put a cohesive sentence together...forget  about it. Having a conversation gets annoying. You ramble on or forget words, are often anxious, and you feel like a big gray cloud is hanging over you; you're depressed more often than not. Mostly depression takes the form of disinterest, and loss of hope for things to change. blah...




You have unexplained Neuropathy. what's that? Pins and needles in your fingers, toes and feet, but can be anywhere. Weird pains that are frequently sharp, stabbing, feels like an electrical shock, and in the same exact place over and over. And oh yes, they are often on your scalp, face, in your eyes or behind them, or ears, like you have an earache. You have pain in your neck and the base of your skull, and you feel like you're trying to balance a bowling ball on your weary neck.

Here's the big one for me... you are dizzy. all. the. time.






You have anemia, low Red Blood Count (RBC, why is my red blood cell count in the ditch consistently?), High Cholesterol no matter what you eat,  Low Vitamin D, and low B Vitamins, especially B-12. Gee, you start supplementing with Iron, (Horse Pills), but you just can't get your Ferritin Levels out of the basement. You gag when you have to take the pills, as it tastes like you're sucking on a rusted metal pipe.

You can't get much accomplished, you compare yourself to others and you feel guilty. You want things to get better, but you don't know how to do that. You're tired of talking about it, tired of trying to explain how you feel over and over, and you're tired of yourself. You're a spiritual person and you pray, everyday, for wisdom and healing. Your life is a hamster wheel.

You talk to your doctors about all this stuff (over and over) and they look at you, and you know what they're thinking, (that it's all in your head: you must need attention, you're a hypochondriac, you're nuts) The doctors acknowledge all these issues, but don't see how all these symptoms can all fit together. You're wondering if you have other health problems that can stem from auto-immune problems like Rheumatoid Arthritis, Heart Disease, Adrenal Fatigue, Lupus, MS. Fibromyalgia, Chronic Fatigue Syndrome, CFS, Meniere's Disease.  The doctors have a glazed look in their eyes, (overload) and then they start talking about something else... moving on. You leave the office with no new information or real help. "Try this or try that", they say, when you know good and well, you've already tried those things and that it's not going to help... enough.

Does any of this sound familiar to you? Even if it's just a few of those symptoms?  Maybe it's not you, but do you have a friend or loved one that suffers like this?

And the most ironic part of all this? You were diagnosed with Low Thyroid (Auto-Immune Hashimoto's Disease) and have been taking a Thyroid replacement medication for almost 30 years. 

So, what's wrong with me and why isn't my Synthroid or Levothyroxine making me feel better? Aren't all these symptoms supposed to go away when you're diagnosed and taking the Thyroid medication? Yes, they are, but sometimes the standard Thyroid medication isn't all that you need.







I'm going to leave you with one thought. One word, one big deficit in my life and health: A Thyroid Hormone called T3. It's rarely tested for when you have a Thyroid Blood Panel done. Doctors know about it, but don't give it much thought, even though it has credible research and findings. A Thyroid blood panel can be easily misleading, even to the doctors. They probably won't test you for T3 unless you ask for it specifically. Why? Well, in a perfect world our bodies convert the main Thyroid Hormone, T4, into T3 once it gets into our system, but guess what... there are some of us who don't convert T4 into T3. And we're the ones that are sitting there like we're not taking Thyroid Replacement at all.  Because in reality, we're not getting the most important, end game hormone. Sorry, I don't live in a perfect world and no telling how long I've not been converting over. My body has been starved for a hormone that literally controls and affects most of our body systems.


Top 16 symptoms of Hypothyroid
  1. Fatigue
  2. Increased sensitivity to cold
  3. Constipation
  4. Dry skin
  5. Unexplained weight gain
  6. Puffy face
  7. Hoarseness
  8. Muscle weakness
  9. Elevated blood cholesterol level
  10. Muscle aches and pain
  11. Pain, stiffness or swelling in your joints
  12. Heavier than normal or irregular menstrual periods
  13. Thinning hair
  14. Slower heart rate
  15. Depressed mood
  16. Impaired memory
Here's a link to a great website. This is just one post to start with, especially if you're not very familiar with Thyroid problems: Low Thyroid specifically.  Check it out and see if any of this fits what you're going through. Hypothyroidmom.com HypoThyroidMom.com

I'll  have more on this in a few days, as it's too much to post in one sitting. If you've been diagnosed with any kind of Thyroid problem or you think you might need to be tested, just do an Internet Search of T3 Thyroid Replacement and you will have an ocean of information at your fingertips. The only problem with this? You have to KNOW what you're looking for. If you have or think you might have one of the diseases or conditions that I mentioned earlier, then do an Internet Search for "Thyroid Replacement Hormone", and then, "T3 Thyroid Replacement", and then the condition you're checking on. I imagine you'll find some kind of connection.

I'm sharing all this not because I want anyone to feel sorry for me. HECK NO!!! I just wish someone, preferably a doctor, would have told me about this years ago. So maybe this will get someone else the help they need. I've been on T3 for the last 3 weeks and I'm seeing slow signs of improvement. I have to take a very small dose because I have Cardiovascular issues, but even on a small dose my dizziness and fatigue are improving. I'm expecting that this answers a lot of the questions I've had about my symptoms and lack of improvement. I have a doctor's appointment in another month for a complete retest of my Thyroid Panel. Hopefully I'm heading in the right direction.

joining in here:

Feathered Nest Friday at French Country Cottage
Foodie Friday and Everything Else at Rattlebridge Farm
Inspiration Gallery at Craftberry Bush
Best of The Weekend at Ms Toody Goo Shoes
Sundays at Home at Love of Home
Amaze Me Monday at Dwellings
The Scoop at Stone Gable
Inspire Me Tuesday at A Stroll Thru Life
Wow Us Wednesday at Savvy Southern Style
Share Your Style at The Essence of Home


33 comments:

  1. Thank you Debra, your health/discoveries are so important, so glad you are going to continue sharing what you are learning. Hugs.
    Joy

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  2. Thank you, Deb, this cannot be an easy post - our health issues are never easy to share - but holy moley if this helps those prayers WERE answered to be sure!

    Thank you so much for this information. Hugs and prayers continued for you to feel better asao! ♥

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    1. thanks Michele, it's hard putting all this out there, I just feel like I need to share the stuff I go thru in case someone else might be having the same happen to them. Big hugs back to you!

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  3. Good for you, Debra, so glad you are responding to the new regimen. I am aware of T3. That description of the head feeling like a bowling ball on a weary neck is me, much of the time. I know many of the other symptoms too, all too well. It's a good thing for you to share this with many more who may not be aware. I know you've spent a good deal of time researching and advocating for yourself.

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    1. Hey Rita, I should have asked YOU about this, I could have found this out so much sooner! LOL, you have all the info, girl!

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  4. I'm so sorry you're still going through all this crap. I've had an issue the last couple of years & I feel like they kind of wish this old woman would go away. I see this look on their faces like they think I'm a hypochondriac. It seems a sad state of affairs that we have to research and self-diagnose. I wish you the very best.

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    1. I know... all the heart stuff and this on top of it, but I feel like the heart stuff is related to the rest of this. Now if I can get past this and not drive like a drunk lady maybe we can get together for that lunch we've been planning!

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  5. Thanks for the info and thanks for doing all that research!!! We have to monitor ourselves and find answers. So glad you are feeling some improvement, keep going girl!!!

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    1. thankyou, I think I missed my calling as a research assistant, LOL!

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  6. Debra,

    I so identify with you on many levels. Not sure how much or often we should share our health problems on our blogs. I've come to believe that most of my readers are friends and more often than not, talking about my problems enables others to share their stories. Please keep us updated. Like you, I exhaust every avenue in getting info on my symptoms and possible causes. Thank goodness for the Internet, as we can always ask questions with our physicians but it's often a one way street.

    If you've kept up with me you may know I'm suffering from an auto immune disorder which has caused my severe eczema. Some think it's just an annoying rash, but this has overtaken my life over the past three years. Itchy, oozing skin that cracks and bleeds, inability to move my elbows and knees without pain, stiffness and bleeding, and totally not being able to turn my head as the pain and dryness in my neck is excruciating. I was taking a powerful medication last year which almost totally alleviated my symptoms. The side effect was it lowered my immunity and my lymph nodes enlarged at a huge rate. My GP thought the lumps in my breasts were questionable so I underwent a painful and emotional needle biopsy. All of my lymph nodes in my breasts and armpits were hugely enlarged. I waited days on pins and needles, sure I had stage IV breast cancer. It was an infection similar to mono, but called CMV. It's a virus with so many of the symptoms you described. I had been sleeping 16 hours a day and feeling so terrible that I couldn't keep up with the simplest things in life. I had no desire to get out or do any of the things I loved. I dreaded when my kids came over...I just wanted them to leave so I could sleep. I would actually fall asleep in my chair reading or watching TV. Physically and psychologically, I suffered. The guilt was immeasurable.

    I'm off that medication now, but the virus reactivates, as all do. I'm going through that again now. I try to get 10 hours of sleep and then a 2 hour nap in the afternoon. It takes a lot of discipline to keep moving. When I have 'good' days I try to get laundry done, clean the house and prep a few meals. Thank God I don't have a full time job or little ones. I'm blessed in that department. My husband is supportive but also confused.

    I'm sorry for droning on...I should have sent an email. The end may be in sight if my insurance approves a new medication recently passed by the FDA. Just waiting and trying to get through each day.

    I wish you all the best and I'm sending you a huge hug for your bravery and openness. You've got a friend here.

    Jane xxx

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    1. Jane, thanks so much for sharing, it's good to do it in a comment so others can read it, too. I know you've had problems. I guess we just usually don't share how bad things can be for us. Do you know that Eczema (all forms) are associated with HypoThyroid? Have you had blood tests for that? Low Thyroid could be what's causing it to stay with you. I know when I was young (a kid and until I was in my 30's) I would have it all over my hands arms feet, up to my ankles. It was horrible! so I can imagine just a little what you go through. Please get your thyroid checked and have them do a "Free T3" test to see if you're producing enough. This could be part of this whole equation with your immune system. I really appreciate you, sweet friend. Let me know about all this ok? xoxo

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  7. Debra, I can't imagine how frustrating all this has been for you!! I hope that your new medication eradicates all of your symptoms! Kudos to you for researching this and finding an answer to your problem. Even though I work in healthcare, I know that we've got to be our own advocate, which is unfortunate. I've been eliminating foods to help with my symptoms, but I'm ready to throw in the towel because pretty soon there will be nothing left for me to eat! I hope that everybody reading your post comes away with the thought that if you're not convinced that your doctor is right to keep searching for answers. Thanks so much for sharing this with us and take care.
    xo, Vickie

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    1. thankyou, Vickie, It's terribly slow going. I'm not a very patient patient, especially since I've been like this for what seems forever. I've worked in healthcare myself, (long years ago) and been through "the system" so many times. There are so many people that really care, but most doctors are overworked and not enough time to devote to individual patients. a lot of loose ends and disconnects withing the health care system. I hope you can work through your diet. My sister-in-law has gone through that and she's a vegetarian so it's really hard for her to find foods she can tolerate. big hugs, friend!

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  8. Wow! This info is so eye opening! I have Graves Disease which is a hyper thyroid. I was diagnosed in my late 30's. I took a radio iodine tablet to kill part of it so that it became hypo. Then it's treatable with Synthroid. However, my tests all show a normal thyroid level now. I assume that yours did too? I've never heard about the T3 hormone being tested. I'm thrilled to hear that you are finally receiving the proper treatment! I have some of those symptoms you mentioned but they are related to other things. They are intermittent so I'm not worried. I have other health issues that I'm being treated for which explains them. Thanks for taking the time to put this post together. I'm sure it will help someone.

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    1. Hi Kelly, yes, the doctors have told me my tests were all normal, but clearly when they did the tests I asked for it showed that my T3 levels were way in the red zone of LOW. Next time you have your thyroid tests done ask them specifically for Free T3. that's they key. If you don't have that test we don't get a complete accurate assessment. all my other tests were fine, but my doctor was stunned when she saw that I wasn't getting the benefit of my replacement hormone. thanks for sharing what you go through, even though it's hard I know that it helps so many people understand what they themselves might be experiencing.

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  9. Debra, I just can't even imagine. I really hope you find the answers you desperately need. In the meantime, you are sharing great information with others.

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    1. thanks so much Stacey, I think I may be on the right track!

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  10. ALERT EVERYONE ! Have your B12 LEVELS CHECKED !! Should be at least 400-500 ! Level! I was misdiagnosed by 7 doctors for three years! Was left with permanent nerve damage ! Neuropathy in feet and legs! Tremors daily! Had all those symtoms! CHECK b-12 defiencency symptoms! Very scary ! I have pernicious anemia !! My body does not absorbe b-12! Scary! Almost ended up with permanent brain damage! I take innections of b-12 Now! Check your levels everyone !!!

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    1. Hi Cindy, mine was really low too, but since I've found out I've been supplementing, now it's up. You're so right. I think many people have problems with their iron and then a host of other illnesses because they don't know the dangers of low B-12.

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  11. First of all, I hope you manage control it and feel better soon.
    I had a 20-something bestie and my mom, both suffering from Hashimoto. It's a subtle disease, with so many symptoms, it's tough to be diagnosed. The problems it's causing though are anything but subtle. It also fluctuates and if the test happen on a "good" day, the doctor will miss it.
    You described almost every single aspect. Know that it IS manageable but you need a kick butt doctor to keep testing (because the medication needs constant re-adjustment).

    I find it crazy strange about the T3 strange. Back home, the very basic first test for thyroid includes T3, T4 and TSH. All 3. It's the standard entry test. ENTRY.

    It blows my mind that you share that they do not test for T3 by default...

    Best wishes and keep fighting it!

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    1. Hey there, I came over to your blog, where are you located? Drs are just now realizing that T 3 is a contributor to this nightmare. I have to say that I'm angry with primary care here in the states. If you're not informed you get undiagnosed unless it hits them in the face. Thanks for leaving a comment!

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    2. I live in MA but I come from Greece.

      Honestly, it made me a little angry too, reading your post because I know how tough hashimoto - and any thyroid problem - is and not testing for one of the 3 main and major thyroid hormones is unbelievable.
      If they know about the hormones in Greece, they definitely know in US.

      ps. It's great you posted all this information. The more people know, the better!

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  12. Thanks so much for sharing Debra! I look forward to your next post in this. You must be so happy to finally be getting some answers and help with this.
    Always a pleasure having you share at Amaze Me Monday!!!
    Blessings,
    Cindy

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  13. Wow, feeling as miserable as you do, I'm amazed that you had the strength and determination to do all this research and to stick with it and insist the Dr.s listen to you! GOOD FOR YOU!! I'm so happy you're feeling a bit better. I hope this is just the beginning of a full recovery. You are amazing. God Bless you, and I wish you continued progress.

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  14. Oh my gosh lady! I am so sorry you ave been battling this for so long! Prayers that you start feeling yourself again real soon!

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  15. Hi Debra, I changed my email. it was plkmrose@gmail.com now is....plklmrose@yahoo.com. So I have missed a bunch. You have been on my heart lately also... I so glad you seem to have gotten the upper hand on this. I'm so glad you have shared this info. with us. Will continue to keep you in my prayers.
    Big Hugs.

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  16. Pamela , correction to the previous post new email is plkmrose@yahoo.com

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  17. Debra, thank you so much for posting! I am in the process of determining what direction I will need to take with my thyroid which is overactive instead of under. A physical last month determined an irregular heartbeat, afib, which can be an indicator of thyroid issues. I just had a thyroid uptake and scan along with the panel. Rest assured I will be asking if T3 was tested at my appointment next week. I guess the scary part is this seems to remain challenging for doctors after reading different notes on the subject on the internet. Please keep us updated! Knowledge is power for us all! Good luck in your treatment!

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  18. Wow. I hope that this is the answer you are praying for. Praying for you!

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  19. Hi there. When my TSH was classified as normal, I had thyroid cancer. I've been thru it. The so called gold standard to check TSH levels did not let on I had cancer. What I found out is that this thyroid journey with mainstream doctors is deep rooted into politics where the masses with thyroid cancer are treated with having the thyroid removed and treated with inferior meds to where they may never get thyroid cancer again, but will die from something else. In my humble opinion the mainstream doctors including endocrinologist do not care how awful you feel as long as your numbers are where the thyroid association says is good. After taking Synthroid (T4 only treatment) for 5 and a half years I finally tried natural thyroid meds, Armour which has T1, T2, T3, T4 and a few other goodies. My regular doctor prescribed this for me and I'm still having issues stabilizing my TSH numbers. I feel better, but there are still issues. I sweated so much with Synthroid and gained weight. My endo ignored what I was saying and blamed peri-menopause/menopause as the problem. 3 years after I had my thyroid taken out, my husband was diagnosed with thyroid cancer. He got so weak he couldn't hold a newspaper. He started Armour and immediately felt better. What I decided is the system does not want to prescribe a pig product because of religious issues as many on the thyroid board are jewish and muslim where both avoid pig products. Politics enters the picture. Synthroid is synthetic not made of pig products. Long story short, just reading wikipedia tells you all the hormones the thyroid puts out and T4 is not the only hormone a healthy thyroid makes. After hearing first hand that Armour is not stable, I read that Synthroid is the drug that isn't stable. The Synthroid patent is sold to where the meds are handed off to another company to make where it isn't tested for shelf life. Armor is actually the stable one and considered an old medicine which is stable. All the best in the thyroid jungle.

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  20. May sound odd but actresses use hemorrhoid cream to shrink their eye bags. A little dab will do ya. I have tried it and yes it works. Shrinks swollen tissue.
    grins,
    d

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  21. So sorry to hear all that you are going through. You may want to be tested for the MTHFR mutation. It is quite common and could be the root of all your issues, including thyroid. You need to take folate NOT folic acid, go off gluten and take methylcobalamin, a former of vit B 12 that your body can use. There's a lot of information on the Internet about this mutation. Check out Dr. Ben Lynche's website. Www.mthfr.net. Try to find a function medicine doctor in you area. 23andme.com does the testing for mthfr for a reasonable rate, but you need to find a qualified functional doctor to help interpret the results. Good luck on your health journey. You're not alone!

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