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Frustrated after RAI, still out of whack
Last Post 17 Apr 2018 01:17 PM by Elaine Moore. 1 Replies.
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AKUser is Offline New Member New Member Posts:
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13 Apr 2018 04:28 PM
    Hi Elaine & members, I am new to this group and finally feel like I have found my long lost family that will understand what I am going through! Sorry for the long post, wanted to give as much info.

    I am a female and was diagnosed with Graves February 2016, age 40. I have a very stressful job and family life, as we all do :) (husband assaulted at knifepoint on the job, he suffered depression after that, mother diagnosed with stage 4 ovarian cancer, caught dad having a stroke 2 months later on the stairs, close family member, age 21 passing in plane crash, job stress and a few others not listed but you get the jist) had symptoms of sweating all the time, cramps, heart palpitations, terrible sleep, tremors, 6-8 bowel movements a day, sudden weight loss and vision in my left eye was affected by double vision etc., did not respond well to Propranolol, Tapazole & Propythyracil and was advised by Endocrinologist that RAI was the only option. I trusted him (now I know I should have had a second opinion and did my own research). Can’t reverse it, wish I could. My daily life after RAI (September 15, 2016 - 15mCi 131) has been a rollercoaster, and not one I am enjoying. I started to have brain fog & nausea about 4 says after and it got worse. Contacted the Endo and he wrote the following in his notes:

    “Since her radioactive iodine treatment, she endorses recurrent thyrotoxic symptoms and local neck tenderness. I suspect the treatment was complicated by an inflammatory thyroiditis. I have recommended prednisone 20mg PO daily x 14 days and will restart her PTU 50mg PO BID x 4 weeks”

    I then had depression & anxiety set in, muscles ached, and cognitive function was so poor I couldn’t pay my bills or think straight, could not drive and so many more symptoms. I was not able to return to work as it is a fast pace and very cognitively demanding job. I did not have any hypo symptoms except weight gain at this point in November 2016. Endo then wrote in his notes:

    “Thyroid function test from October 2016 showed evidence of hypothyroidism. She was started on levothyrxoine 0.1mg daily. Repeat thyroid function tests from December 2016 showed subclinical hypothyroidism and her dose was further increased to levothyroxine 0.125mg daily.”

    I was a mess! My husband was scared! I had zero energy, still not working, driving, vision worse, brain fog, weighed 155 lbs before RAI, now was 170 lbs, was eating much less due to nausea, my body ached, cramps, still sweating like crazy, sleep was terrible, bowel movements did not change and so many other symptoms I am sure you are all aware of. Begged to try Cytomel in combination but my heart did not like this at all so I was back to Synthroid. I read about Thyroid Hormone here in Canada and a friend said it gave her her life back. Endo refused to prescribe and said “he treats the thyroid and not the symptoms” WTF! As I did not have these other symptoms until the RAI, told me to get anti-depressants and then 2 months later he sent a letter that he was closing up his practice in 2 months. Waited 4 months to get a new Endo and she was great and open to Thyroid Hormone but still in Med school and no experience with it but after seeing what I went through gave it a shot. She did not have anything good to say about this medication, that it was not regulated blah blah blah.

    Fast forward to today, still not working, some days I can drive, have tremors, heart palpitations, cramps, bowel movements 4-5 times a day, dizziness, lightheaded, terrible memory, body aches so bad, hands, feet and face swelling, no energy, terrible sleep, nausea, weight now 200 lbs, and so many more, and now pay out of pocket to see a new Dr who has asked for a saliva test to check my hormones. September 2018 was prescribed Erfa Thyroid 60mg @ 7am, 30mg @ 4:45pm. Was doing good, December 22, 2018 started compounded Desiccated Thyroid as Pharmacist could not get Erfa. Dosage was alternating every morning 45mg and 60 mg and every evening 30mg. Mid Feb started to get cramps, sweating more, anxious, tremors, zero energy, trouble waking and sleeping etc. After bloodwork March 23, 2018 and not being able to move (see below) Endo changed my dose March 29, 2018 to Erfa 60mg @ 7am, 30mg @ 4:45pm. I am struggling every day to do anything! Here are my test results and what

    I am currently taking:

    Nov 3/17
    Thyroid Stimulating Hormone [TSH] 2.06 ( 0.32-4.00 mIU/L )
    Thyroxine Free [Free T4] 10 (9-19 pmol/L)
    Triiodothyronine Free [Free T3] 5.3 (3.1-6.2 pmol/L)
    Thyroglobulin Antibody <10 ( < 40 kIU/L )
    Thyroperoxidase Antibody 12 (< 35 kIU/L)

    Serum Proteins C Reactive Protein (High Sensitivity) 5.29 mg/L
    hsCRP is considered a valuable risk stratification measurement in females >60 years and males >50 years. Values >2.00 mg/L in these patients warrant further investigation. Refer to the CCS 2012 guideline for revised hsCRP CVD risk criteria.

    Bone Markers 25-Hydroxyvitamin D 99 (75 - 250 nmol/L )
    Season, race and dietary intake affect 25-Hydroxy Vitamin D levels. Highest levels are found in the summer months and lowest levels during the winter.

    Referred Tests Reverse T3 Reverse T3 13 (8 - 25 ng/dL)

    Dec 7/17
    TSH 2.79
    Thyroxine Free [Free T4] 9
    Triiodothyronine Free [Free T3] 6.0

    Mar 23/18
    TSH 26.2
    Thyroxine Free [Free T4] 9
    Triiodothyronine Free [Free T3] 5.7

    Apr 3/18 (redo of test to ensure it’s not a lab error)
    TSH 13.3
    Thyroxine Free [Free T4] 7.6
    Triiodothyronine Free [Free T3] 8.3

    Current Medications and Supplements:

    Cyclen 21 – Birth Control 6am
    Erfa Thyroid Hormone 60mg @ 7am & 30mg @ 4:45pm
    7 Keto-DHEA 25 mg 2 capsules daily @ 11am
    Progesterone SR 30mg days 3 – 13 of menstrual cycle @ 6pm (currently taking this one)
    Progesterone SR 150mg days 14 - 26 of menstrual cycle @ 6pm
    Omega EPA-DHA 720 2 capsules per day, @ 11 am & 1 pm
    Vitamin B – 2 capsules per day, @ 11 am & 1 pm
    Liquid Vitamin D3 6000IU @ 11am
    Liquid Calcium, Magnesium, Zinc & Vit D 30ml @ 8:30pm
    6 to 8 Brazil nuts @ 8:30pm

    I would appreciate any insight you could offer.

    Endo says that this is due to the change from Erfa to compounded, but says she is not sure? Could this be the case? Says I will have to go back to Synthroid if the next set of bloodwork fluctuates or I am not feeling better and I begged her to not do that as I felt horrible on it. Also says there are no other medications available?

    I am looking to remove gluten from my diet and hoping this will help. This is where it gets overwhelming and frustrating as I am not sure if I can eat non-dairy yogurt to get pro-biotics which I understand can help with leaky gut or is a pro-biotic supplement best? Any other suggestions for diet? I do eat chicken and turkey but that’s about it, don’t like the texture or taste of other meat or fish.
    I am trying everything to lose the weight and very frustrated that I have made so many changes in my diet and am gaining weight, and now my body hurts to do all the things I did before like cycling, walking 45 min a day, yoga 3-4 times a week, gardening, any tips?

    Am I on the right track? Any other suggestions?

    Thanks you so much for taking the time to help others and help us gain more understanding and knowledge about our NEW lives. Stay strong everyone, you can get through this 
    Elaine MooreUser is Offline Veteran Member Veteran Member Posts:3266
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    17 Apr 2018 01:17 PM
    Hi,
    You really can get through this. I had RAI at about the same age as you and 30 years later, I'm still doing ok although I consider RAI the worst mistake I've ever made.
    You were seriously hypothyroid at the start of April and to compensate your metabolism changed and you started converting more T4 into T3, thus your high T3. Also, the compounded dose may have been off.

    If you can't get ERFA, can you get Armour or NP or Westhroid? I can buy all of these online so they're available. If not, I'd try a different compounding pharmacy or have yours up the levothyroxine and decrease the triiodothyronine (T3).
    Once you're on an optimal dose of meds, which you clearly have never been, you'll feel much better. You would also benefit from COQ10 because our levels are depleted in hyperthyroidism and not restored. About 100-200 mg a day would help along with a good multivitamin.

    Your lab tests are important and, after RAI, a TSH of 0.4 is typically too high. Because your dose of RAI was quite high you likely have high levels of TSH receptor antibodies and these falsely lower your TSH result. So you expect it to be low. Mine is rarely above .03 mu/L.
    You want your FT4 near the high end of the reference range or around 19 and you want your FT3 to be midway between the middle and high ends of the reference range.

    It's also important to take at least 200 mcg of selenium but not more than 400 mcg. Check what's in your multivitamin before adding a supplement so you don't take too much.

    Avoiding environmental triggers such as excess dietary iodine, stress, cigarette smoke, and allergens can also help as can a nutrient-rich diet. Let us know of your progress. Best, Elaine
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