7 months of constant doctoring, 5 years of feeling poorly.. is it just thyroid?

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I am a bit of a mess, and honestly at a loss.

I started gaining weight 4.5 years ago, feeling fatigued, and generally not well. I brought this up to my doctor several times. She called me a perfectionist and said weight gain is normal, and I was tired because I was a single mom. However, I knew something was wrong. 12 lbs turned into 20, and 20 turned into 30 and then 45 and then within a month I jumped from 45 to 60lb weight gain. So, in 4.5 years I have gained 60 lbs. I am not an inactive or unhealthy person. I have tried several different meal plans, 8 weeks with a trainer doing workout and counting macro nutrients daily and only dropped 6 lbs. I gained them back within a week of not counting.

Finally, I started doctoring again in Sept 17, I had lost quite a bit of hair, including eyebrows and then got very fuzzy in other places, I am cold ALL the time, even when its 80 degrees outside, I will randomly swell up and break out in hives so they did labs... - my entire thyroid panel came back strangely. Forgive me for not having the numbers available right now. I was put on 50 mcg levothyroxine, however with each monthly follow up my numbers began trending downward with no changes in medicine. I was diagnosed with PCOS, endometrios, vitamin D deficiency and put on metformin as well. My doctor tried me on a weight loss concoction, and I did drop about 15 of my 60 lbs. but I have plateaued and if I vary from my diet whatsoever I will gain 2lbs a day. I have discontinued the weight loss cocktail as it did not seem to be helping.  In January of 2018, my level of levo was increased to 75mcg, my tests came back that t4 and t3 were normal range but on the normal side, however TSH was low at .22. I was referred to an endocrinologist who re ran my levels starting my TSH had not budged. My anxiety is through the roof, and I have never been one who cannot handle my situations. My mind doesnt feel like it works anymore, I will forget what I am saying in the middle of a sentence.

the endo did an exam and found a lump/nodule and ordered an ultrasound. The soonest I could get in is three weeks out. I noticed this morning my weight is slowly creeping back up with no changes to my diet and my face looks very puffy. I have acne that will not heal and my face is red and blotchy. Can anyone offer advice on what to urge? I am so disheartened and frustrated. I wish this was caught 4 years ago - I absolutely hate the way I look with this extra weight, but I really hate the way I feel. I take a bath every single morning because my body hurts so badly.

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  • Posted

    Hi CW, this is typical thyroid stuff. Can’t get a proper diagnosis. Next is can’t get medication. Next, can’t get the dose right... next is, the medication doesn’t work at any dose and causes thyroid disease to worsen. Try a different medication, repeat dosing trial. Try another medication, repeat. Until you run out or give up.

    Once you’ve run the the various brands of levothyroxin, generic, compounded, then and only then will the docs try the NDT. But then you try a bunch of those, they seem to work beautifully initially (the NDTs) but that’s short lived, as the meds basically pass through your optimal zone and continue to swing the other way. Next you try glandular supplements, followed by other supplements, amino acids, specialized diets. Then troubleshoot your entire health, because by now you can’t digest anything and you’re starving to death and blowing up like a balloon because the thyroid disease has caused pancreatitis. Yup, what a lovely little surprise that was for me! Any of the dozen doctors should have immediately suspected pancreatitis, given my giant abdomen and rapid weight gain/ massive bloat. But nope! Seriously, from a size 5 to a 16? Giant bloated belly, while bidy bloated with weird hard tissue and bumpy everything where it isn’t supposed to be.

    Meanwhile, your life spirals down the drain, relationships crash, finances drained, job... what job? 

    Yup, a bit of a rough week for me. I ran across a picture from when the thyroid disease first flared up, and could see the giant cyst on my neck. All the while, docs were telling me it wasn’t noticeable (they couldn’t find it) seriously?! And all the ultrasounds came back as no increase in size, when clearly (as shown in pictures) it was growing like crazy! It’s been 9 years of thyroid hell and it started with docs denying the existence of the problem. I’ve given up on the traditional treatment as it doesn’t work and causes more harm than good. Now, with extensive alternative treatments, I’m finally feeling a bit better! I don’t know if I’ll ever recover from this hell, but I’m hopeful!

    Read through the many posts here. You’ll find out what the progression of the disease is, what the standard protocol is, what works for patients and what doesn’t. 

    The trick with thyroid disease is to beat the clock. You’ve got to turn things around before your life and health are so far down that it’s impossible to recover. This is not an exaggeration, this is what happens. It can take years to try and get a proper dose and thyroid medication that works, but more likely, as you’ll read in the many posts here, you can didn’t years and be worse off for if. 

    Maybe you’ll be one of the lucky ones that do well on the prescription meds.

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  • Posted

    If you have any signs of a low functioning thyroid disease such as!!!!!!!!!

    Autoimmune problems,Fatigue,Sleep problems,Sugar and Carb Craving,Weight gain,Falling  Hair.And thin or Brittle Nail,Lack of libido, vaginal dryness, painful sex or menstruation,Brain fog or memory loss,depression, anxiety,infertility.Women around the world need to become aware of the thyroid.

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    • Posted

      Exactly - I am going to begin researching healthy ways to heal without modern meds. Hopefully something works.
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    • Posted

      You’ll find a lot out there. Avoid iodine. Bkadderwrack is a good source. Make sure it’s a reliable company, because kelp can have high radioactivity.

      What you won’t find, but I’ve found helpful are liquid chlorophyll, dandelion greens, essential amino acid complex, phenylalanine, boron, digestive enzymes capsules), turmeric with bromelin.

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    • Posted

      Hi Sailor, yes, we need to be aware of the symptoms. However, that isn’t enough. Thyroid disease has reached epidemic levels. Yet it is not being properly addressed- no prevention, too little, too late, ineffective and inappropriate treatment. 

      Even when people try to get help, they can’t get it because doctors don’t seem to know how to diagnose or treat.

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    • Posted

      My daughter who is 27 now Ignored all her symptoms Didn't want to believe she could get depressed I kept finding her hair everwhere She didn't share the the large hard lump on the left side of her neck Finally saw a doctor 6 yrs later and it was Thyroid Cancer Smart to say we need to be aware MtCatherine is is right about Thyroid becoming an epidemic My T4s are always low and feel crappy Doc says Your fine So annoying 

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