This is my 3rd post after a 2nd opinion with another endocrinologist.
But, this Dr said the same as my original. My issue is that I’m not sure that I should go through with the radiation. I’m scared because I feel like I will be hypo again.
I was hypo for 15 yrs. in May 2017 I became hyper. Got on Methazolen and, felt awful. 3 months ago, my TSH was 76 so my Dr told me I was med induced hypo again. He lower my dosage and, I’ve been extremely sick since then. Now he & the other Dr. Is recommending RAI saying that I’m hyper from Hashimoto and that I won’t go hypo again. I’m so conflicted about this and, scared about this radiation. Here are my latest labs:
Thyr Perox Ab 3785 ref: 0-60 (very high)
TSH 0.010 ref: 0.35-3.740
T4 1.70 ref: 0.70-1.46
T3 total 2.65 ref: 070-1.79
Vit D25 29.10 ref: 30-100
Vit B12 362 ref: 193-986
I live in the US today’s date 1-5-17. Should put off the RAI and see if I get better?
Thank you,
Rita
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Rweir39
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Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
I don't know what other more knowledgeable people will say about your results and I’m not a great interpreter of other peoples’ Results - but I don’t understand why your TSH is so low and your T4 is low too - when I was hyper and my TSH was that low, my T4 was high - I never had T3 tested so I don’t know what it was like - anyway, I would want to get all my vitamins and minerals - vitamins D3 and B12, ferritin and folates - well up into their ranges before I made a decision to have RAI.
I can’t remember if you said you were on a gluten free diet but I went totally gluten free two or three years ago and that really reduced my thyroid antibodies but I was in remission when I did that so whether it would work if you weren’t in remission is another matter.
I also cut out all junk food, biscuits, cakes and diet sodas, ate lots of fresh food like fish, chicken, eggs, lots of fresh green vegetables, nuts and seeds. I also cut down (well pretty much cut out) grain based carbs and potatoes because they raised my blood sugar.
You could always tell your doctors you would like to try one last round of block and replace before you make your decision then tackle your diet and lifestyle - lots of rest and maybe some gentle exercise and see what happens.
On the other hand I know of at least two people who have had RAI and who are both doing really well. My sister in law had it over forty years ago because she had thyroid cancer. She is slim as a willow, so active I’d say she seems hyperactive - always hiking, climbing, sailing cross country cycling, very fit and active. The other person had it after having Graves after having three children, I think it got worse after each child and she has a really high powered job, she too is slim and very active. I think on this site you tend to hear from people who are having difficulties rather from the people out there like the folk I know who are fit and getting on with life while taking thyroxine.
Even then if I relapse I would want to go back onto block and replace treatment indefinitely rather than have RAI treatment - mainly because I became hypo during my treatment for Graves and I didn’t feel good, not like being hyper but not well and I don't feel confident that I would be given the medication that I would need should I need more than levothyroxine.
Your results don't make sense of what your Endo says. Your results look like you are having a Hashi 'flare' where antibodies attack your thyroid gland and release a lot of hormone into the blood, causing a 'hyper' phase which doesn't last, you'll go hypo again. Your antibodies are very high indeed indicating this is what is happening, a Hashi flare. After it's over, you will become even more hypo as your thyroid will have lost more of its ability to produce hormones. Your doctors don't appear to know much about the thyroid.
I would not have RAI if I were you, I've not heard anything positive about it at all, and it's not what you need. There's a lot more you can do to help yourself, your B12 is too low as is your Vit D, both need to be supplemented. Your thyroid has no chance of working properly with such low values. You should also have folate and ferritin tested.
Your T3 is very low - how do you feel? Are you sleeping OK?
I cancelled my RAI appointment. My hyper levels are worse as of today. Do you know how long does a hashimoto flare up last? I'm currently extremely hyper and feeling awful.
Which anti-bodies were tested - was it TPO ? How much VitD are you taking and quantities for the other vitamins and minerals ? I have Hashimotos but did not know at the time when I was really poorly so cannot help you with the length of a Hashi flare
Gluten free is good but it does take time, as do all the supplements. Hope you soon feel better - please be kind to yourself.
If you are in doubt, I would say no - you can always change your mind later. You can't become hyper if you are hypo. If you have just experienced a Hashi's flare you will become hypo again anyway as more of your thyroid is destroyed. Going gluten-free and taking a selenium supplement can help with antibody attacks.
I cancelled my appointment for RAI and now gluten free but, it appears that I got worse based on today's lab work. I'm at a lost as to what to do next.
Maybe a good idea to start a new thread with these results and link this thread in your question. You have technically written/replied to yourself so not many people will see it More will view the new post and members will be able to share their experiences with you ....
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Desperatly seeking advice - is there someone who can tell me about TSH suppression and my blood results before my Endo visit next week?
Could I be hypo 3 weeks after RAI
switched from Armour to Erfa, not sure what to think
Antibody tests
Should I have just stopped my methimizole because I was heading to hypO? 6-7 weeks ago very hyper thyroid my last test showed going hypo
