Hashi's flare: I've been feeling so terrible for... - Thyroid UK

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Hashi's flare

Xheila profile image
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I've been feeling so terrible for the past month and a half, and now I've gotten a satisfactory answer, that I am having a Hashi's flare, when part of your dying thyroid lets go of the remaining thyroid hormones it was holding on to. When I finally got my blood tests authorized, I saw my FT3 went up dramatically, and my FT4, was now mid- range, it is usually at the bottom of the range, yet I was on the same dose or Armour.

My last dosage change was in late May this year, an increase from 160mg Armour to 180mg. I had been feeling better than ever, for the large majority of this year. But then, in mid-October, I hit a wall. I was very, very bad and I even considered checking myself into a mental hospital because I wasn't really able to care for myself. My symptoms were opposite from my regular Hashi's symptoms (but I did not immediately identify them as hyper-). One thing I noticed was the constant "sore throat" like I used to have when my hypo symptoms were raging. My "sore throat" is almost gone.

I think I might be at the tail end of my Hashi's flare, but how will I know when it will actually end? I am confused that I am having a Hashi's flare now. I thought they only happened during the first few years of your illness--I have been ill for 8 years, though I wasn't diagnosed until 2017. Plus, I thought they lasted days, not more than a month. Please can you shed some light? When can I start taking my Armour regularly again? I am still eating over 4,000 calories/day, and I slept 12 hours last night again. Would it be helpful if I got a thyroid scan/ultrasound?

This was my NDT regimen this week: (regular dose is 180mg Armour)

M-day of blood test--90mg Armour

T--135mg

W--135mg

Th--180mg

F--no Armour

Sat--unsure what to do?

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Xheila profile image
Xheila
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10 Replies
greygoose profile image
greygoose

How long was the gap between your last dose of Armour and the blood draw?

Xheila profile image
Xheila in reply to greygoose

Hi greygoose. I was hoping I might hear from you because you really seem to understand this situation I am in and I am feeling pretty lost. I took 1/2 dose of Armour 26 hours before my blood draw and the other half 11 hours before the blood draw, and fasted prior to the test. I split my dose in the same way before my last blood draw on September 30.

Here are my last few blood tests. I raised NDT in late May, but before September I would always take my whole dose of NDT 24 hours before the blood test.

My TSH has been suppressed at 0.01 for a year, and my last two readings now include the "less than" sign: <0.01.

FT3 Range 2.3-4.2 pg/mL:(April 30, lower NDT dose) 3.8 (September 30) 4.4 (November 22) 5.2

FT4 Range 0.8-1.8 ng/dL: (April 30, lower NDT dose) 0.9 (September 30) 1.1 (November 22) 1.6

I feel much better after skipping my Armour these past two days and with lower meds for most of this week. I really felt like I was losing my mind! I still wasn't great today, but I managed to go grocery shopping at least.

Obviously, I can't keep taking such a small amount of Armour for long, but I am unfortunately pretty dense with noticing when symptoms hit me and I just need some advice from people who know much more than I do. Basically, I am very afraid of going hypo again. And I will likely need to get back to my regular dose, but when? now? as soon as I feel like the hyper is gone?

Xheila profile image
Xheila in reply to Xheila

So, I reduced my Armour this week by 35%, and I am feeling much better. Mentally more stable, and lowered fatigue. I am going to go back on my regular dose for this week because it seems dreadful to have a hypo swing, and maybe easier and quicker to get out of hyper symptoms, or maybe I'm done. Anyway, I will be patient and keep noticing my changes in symptoms. Thank you, you are a big help here.

Incoguto profile image
Incoguto in reply to Xheila

I'm glad to hear you're feeling better.I have done something similar, my ft3 was 84% (24 hours after taking meds), ft4 48% and had insomnia again for 6 weeks, was dizzy, tired, puffy and had palpitations at night. Dropped Armour a tiny bit since yesterday and palpitations stopped and slept...I don't think it's a coincidence. I might have to add t4 to mine as I don't feel well when it's low. How are you feeling with ft4 low in range? I have read your posts, seems that you had low ft4 and high ft4 on Armour up until recently.

Xheila profile image
Xheila in reply to Incoguto

Hi, I've not had my FT4 above 20% of the range until this latest lab test, as my FT4 stayed flat with every increase in Armour. They have always tested my FT3, and that is the only one that rose. So, as I have nothing to compare it to, I can't say if I would feel better with more FT4. But I was feeling very good for about a year, when my FT4 was 10-20% of the range and my FT3 was at the top, or slightly over.

With this Hashi's flare, it was amazing how much better I felt after lowering my meds for a week! And, if I didn't have the awesome, knowledgeable people on this site to help me, I would most likely be getting back on that roller coaster (that is, I would have lowered my Armour for longer than necessary and gone back hypo). Good luck! I hope you can find your balance without too much troubles. x

Incoguto profile image
Incoguto in reply to Xheila

That's interesting, thank you for sharing this!Have you gone back to your original higher dose after lowering for a week? Have you seen an increase in antibodies?

This is very helpful. For some reason I feel awful with ft4 24%, ft3 80% and can't sleep. Jury is still out if i need higher ft3 like yourself or if I actually need higher ft4. Such a fine balance, thank you x

Xheila profile image
Xheila in reply to Incoguto

Yes, I went back to my original dose after lowering (a lot) for a week. I am still overeating, but my main symptoms are gone now. I haven't had my antibodies tested for a few years; the doctors won't test than any more.

It seems pretty common, from the replies I've gotten here, that many who take NDT feel best when FT3 is at or above range, some need high FT4 and others don't. It took me years to find what was right for me!

Incoguto profile image
Incoguto in reply to Xheila

This overeating is mad, isn't it? When ft3 was 100% of range after 24 hours of testing I was eating every hour and a lot. I see, similar here, some doctors test, some don't, my endo asks me to test it once or twice a year when I see him.

That's it, we are all so different x same here, it's taking years!

Sorry for asking so many questions, do you split your dose? And also, if you don't eat do you feel shaky and sick? We are having very similar symptoms.

Thank Xheila, really appreciate that you took time to respond to me x

Hello Xheila I am also in the midst of a flair and feeling v poorly. I’m hypo as a rule but had weird symptoms- some hypo like aching, exhaustion, weakness etc but was feeling on edge, anxiety, panic and unable to sleep. Bloods showed T4 gone over range so clearly hyper.

I also had a private scan this week- he confirmed abnormal, and Hashi Thyroiditis. Too much blood flow in there and a granular appearance across whole thyroid. Not smooth as it should be. I’d had high antibodies 2 years ago so was diagnosed Hashi then.

So, my answer is that I’m now in week 5 with no sign of consistent improvement. One day I’m ok- just- then next hyper and just awful. I’ve done a lot of reading and it appears HT can take anywhere from 1-3 months to resolve. I’ve also read about different treatments- antibiotics, steroids, or drugs to lower T4.

I totally feel for you as I can fully relate. It’s not like other illnesses where you have the confidence you’ll improve day on day. I’m on some crazy rollercoaster not knowing what kind of day I’ll have tomorrow . It’s very stressful isn’t it? If you can get a scan it might help as it can confirm what you are clearly feeling. I’d wondered a bit if I was imagining the tight throat and had got myself into a bit of a panic. The bloods and scan have in a strange way calmed me as I know it’s not in my head and this is WHY I’m feeling so ill. Can you get a scan via your doctor to avoid paying privately?

I’ve requested a referral to private Endo as I know I’m going to need some medication to get on top of this as it’s clearly not settling on its own as my T4 is going up, not down, on regular tests. And I’m chasing the NHS GP as well as I simply can’t sustain the money for private.

Do hope you are having an ok day today and you get well more quickly. I’m not familiar with the meds you are on but likely others more knowledgable can help.

Xheila profile image
Xheila in reply to

Hi Butterfly1942, I was quite confused about my symptoms and I didn't expect I was overmedicated, as I started going downhill soon after an 'optimal' blood test, and I never considered a Hashi's flare.

I thought a thyroid scan would be useful because I wanted to know if my thyroid was far gone enough to not have to suffer through this kind of a rapid change from health to just udder hopelessness. I was probably naive in thinking I'd get this kind of information from a thyroid scan!

Sorry you're so far along in this 'flair' as I am! I reduced my thyroid meds for a few days this week, which is helpful (I'm on NDT so it's probably much faster acting than levo in terms of reducing.) And my throat feels much less tight today. But, like you, I am terrified to go hypo again, it was so terrible for so long.

Yes, it is very stressful always being on this roller coaster. I had many crashes on my way to wellness. I had finally achieved optimal thyroid treatment about a year and a half ago, with small tweaks and no crashes without an obvious reason. This one took me by surprise! I was feeling optimal, building my life back with confidence, until early October. Then things just started crashing in all around. Yes, I too feel comforted knowing my lab tests were off, and I'm glad to know the flair could last 1-3 months. Thanks for your reply!

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