Hashimoto's "flare" feel fluish on and off - Thyroid UK

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Hashimoto's "flare" feel fluish on and off

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Managed Hashimotor's fairly well for first 4 years, but now I am suffering form occasional Hashimoto's "flares". Ever few weeks a flare will come on making me miserable! These flares may last 5 days or so. Body aches, feeling bad, almost fluish, dry mouth. Horrible! Then just like that it stops and I feel normal for a stretch. Been going on for about 6 months or so. I started with (yet another) new doctor who is the first ever to test Reverse T3 and it was quite a bit off. So he has supplemented my T4 (Synthroid) with T3 (Cytomel). I have been on the new combination of T4/T3 for about 6 weeks and am actually having another flare this week. DREADFUL! I go back to see the doc in a couple weeks but for now, out of sheer desperation, I have started the autoimmune protocol and have been on it only 4 days. Dic thinks my body my still be adjusting to the T3 and I read that it takes a few weeks for the AIP to start helping. Aultrasounds shows goiter but nothing bad. Since starting T3 my Reverse T3 and Free T3 ratio is in good shape last blood test 4 weeks ago. Maybe my body is still trying to adjust.

16 Replies
SlowDragon
SlowDragonAdministrator

Some people do feel dreadful when first go gluten free

What about vitamin D, folate, ferritin and B12 levels? Can you add most recent results and ranges on these

These all need to be optimal. Are you supplementing to improve

Hidden
Hidden in reply to SlowDragon

SlowDragon - thank you for responding!

B12 - 610 (range 232-1245 pg/m)

Folate - >20 (Reference Range: >3.0)

Ferritin - 74 (Reference Range: 15-150 ng/mL)

I take fish oil and Vit D. Also getting ready to add Selenium and Tumeric/Curcumin.

All numbers (other than the Reverse T3/T3 ratio) look good. The Reverse T3 ratio has gotten within limits in my recent blood test, but hoping it's just taking time for my body to catch up. My doc said if the Cytomel (T3) doesn't do the trick he looks at other things including neurotransmitters. OH boy!

I'm sorry but the rT3 ratio is meaningless. If your FT3 is low, then the ratio is going to be low. But, that's all it means. I expect your rT3 was high because you're a poor converter, and your FT4 was high. But, it wasn't really to do with your FT3. And it's not taking T3 that lowers it, it's reducing your FT4. I don't think your doctor fully understands it.

Besides, as far as anyone knows, the rT3 doesn't do much, it's inert. And, it only hangs around for a couple of hours, and is then converted to T2. :)

Hidden
Hidden in reply to greygoose

Greygoose - thank you for the response! My understanding is, your cells have receptors that the T3 attaches to which helps get that cell energy. If you have too much Reverse T3 (which does nothing) and not enought T3 (which delivers the good stuff to the cells) then the Reverse T3 will attached to the receptors which do nothing for the cell - therefore the cell doesn't get what it needs and you feel very hypo. Reducing the Reverse T3 and increasing T3 allows more T3 to attach to the receptors so your cells get more of what they need. That is what I thought but may certainly be wrong! My T4 went from 1.6 to at 1.3 (range .8 - 1.7) in the last couple months. Hate feeling so awful for a few days and then perfectly normal (although happy for the good days :)

Hidden
Hidden in reply to Hidden

Greygoose - I have been reading as much as I can on this. And I did read that reducing T4 (Synthroid) is good when you start taking T3. I am on the same amount of T4 for the last 5 years (75mcg a day) and my doc added T3 (20mcg a day) wonder if the T4 shouldn't be reduced. Thank you for sharing your knowledge.

greygoose
greygoose in reply to Hidden

Oh! I thought you said he'd reduced the levo. But, your result has gone down, from what you said above. So, that's OK.

That was a whopping dose of T3 to add in one go! You usually start of 5 mcg and stay on it for two weeks, before increasing by another 5 mcg. And, you carry on like that until you reach 20, then hold for six weeks and retest.

Your doctor probably didn't reduce your levo because you weren't even taking very much.

greygoose
greygoose in reply to Hidden

That's what used to be thought. It is now known that the rT3 has its own receptors, and doesn't block the FT3 receptors.

And, as I said, your rT3 was high because your FT4 was too high. It had reached the point where it converted to more rT3 than T3, so reducing the levo was the right thing to do, and that reduced the rT3.

Lrn5
Lrn5 in reply to greygoose

Greygoose any other thoughts on why I'm struggling with these hypo days? I guess it's just a matter of balancing the medicine. Thanks again for your Insight.

greygoose
greygoose in reply to Lrn5

Could you give us your latest results - FT4 and FT3 with ranges? I'm just groping in the dark, here.

Hidden
Hidden in reply to greygoose

I am so grateful to your feedback. The roller coaster of feeling normal for a few weeks then feeling really rough for a week is awful! Here's my recent timeline/recent numbers. I am looking to see a top thyroid doc in US (have to find one) if my current doc in St. Louis can't help. I go back to him in 2 weeks. Indebted to you greygoose for taking time to look at this.

Jan 2013 – started Synthroid

Apr 2017 – started ARMOR 60mg hoping it would help constip. I did not feel well for 2 months after starting armor and then an day or two a month where I would feel really hypo. This is when the bad hypo days started but eventually worked out with only an occasion bad day now and then that wasn't horrible. Of course my endo said if your numbers are right it's not your thyroid.

Sept 2017 went to functional doc (mostly because frustrated w constip.) and had all the test run - all good results, perfect cortisol, except allergy to whey, eggs and very high gluten numbers but not celiac. Tried to eat better.

Nov 2017 – started having these more serious hypo flares on and off

Mar 2018 – endo put me back on Synthroid 75mcg (felt great for 30 days but then intermittent hypo flares again)

.

Apr 20 2018 - started w new integrative doctor who found the reverse T3 ratio was low and added Cytomel T3 (again felt great for over 30 days then flares started again). Not sure if I need more T3, less T3, ONLY T3!!

Numbers April 6 before starting T3. Started T3 Apr 12 and felt great for over 30 days.

Free T4: 1.64 (.82-1.77)

T3: 96 (71-180)

TSH: 1.59 (.45-4.5)

Free T3: 2.8 (2-4.4)

Reverse T3: 22.8 (9.2-24.1)

Numbers May 20 (had a couple severe hypo days/flare right before this)

Free T4: 1.3 (.82-1.77)

TSH: .040 (.045 - 4.5)

Free T3: 4.0 (2.0-4.4)

Reverse T3: 18.9 (9.2-24.1)

greygoose
greygoose in reply to Hidden

I don't want to quibble, but what you're experiencing are not Hashi's flare. A Hashi's flare is when the immune system attacks the thyroid, and the dying cells release all their thyroid hormone into the blood, causing the FT4 and FT3 to shoot up rapidly - FT4 around 35, FT3 around 12. A flare is not having a few hypo days.

Normally, when you've been feeling good for a while, and then you start feeling bad again, what it means is that you need another increase in dose.

You're May results look good. But, it often takes symptoms a while to catch up with blood results. I agree with your doctor that you might still be adjusting to the T3. Or, you might be someone that has problems absorbing at a cellular level, and need their FT3 slightly over-range. And, of course, it's perfectly possible that NDT just didn't agree with you. It doesn't agree with everyone, especially not if you have Hashi's.

started w new integrative doctor who found the reverse T3 ratio was low

That is absolutely meaningless. It wouldn't have made you feel bad, or had any effect on you at all. The rT3 ratio is pseudo-science and isn't even a true ratio. And, ratios have little place in the treatment of hypo, anyway, they are for healthy people. If your FT4 was high, your rT3 would have been high, and probably your FT3 low. If your rT3 is high and your FT3 low, the ratio is going to be low. You don't even have to work it out. But, it doesn't mean anything. You can see your FT3 is low just by looking at the result.

So, I think you just need to give it more time… say another six weeks, and then retest. And, if you still feel bad, try a tiny increase in T3. I take it all your nutrients are optimal?

Hidden
Hidden in reply to greygoose

Yes nutrients are good. Started autoimmune diet last week - but I have always been a really good eater. I see my using "flare" is the wrong term! Thanks for the clear explanation. And I understand now about reverse T3 ratio - thank you for setting me straight on that! You are an angel to take your time to share your knowledge on this site. I have recently read a lot of these thyroid boards and I think this is the best one out there, and your comments are always so straightforward and helpful. So can't tell you how grateful I am to have your input. I agree a few more weeks of patience and see if the T4/T3 combo will help. If it is a cell-level problem what kind of things do they look for/test/try?

greygoose
greygoose in reply to Hidden

I think the only thing you can do is try taking higher doses of T3 and see if it helps. There are no tests to see what's getting into the cells. Most doctors are a bit clueless about it, anyway.

Hidden
Hidden in reply to greygoose

Ok that is the next step. Such a struggle. Thank you wish I could repay for your kind help.

greygoose
greygoose in reply to Hidden

You can repay it by getting well! That's the best recompense. :)

Lrn5
Lrn5 in reply to greygoose

:)

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