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Discussion Starter · #1 ·
Hello all,

Never thought I would come to the point of seeking some advice from fellow kindred spirits on a forum, but it's worth a shot!

I was diagnosed with Hashimoto's Thyroiditis about 5 years ago, but have been experiencing symptoms for about 7 years. I've been on a healthy dose of Synthroid since being diagnosed, and have felt alright in general since then.

However, over the past few months, I have had flare-ups more frequently, much like before I was diagnosed and before I started the medication. I went for a blood test in May, and was surprised to see my thyroid antibodies were higher than they have ever been. Before that, they were actually decreasing very slowly but surely in my bi-annual blood tests. I was a little disappointed to see they had increased recently, but it definitely makes sense to why I haven't been feeling well the past few months.

Fortunately, I found a new endocrinologist recently and have an appointment scheduled for later in the month; hopefully she will be able to provide some new treatment plan or lifestyle change. I think my biggest concern is what the overall outcome for the future will be... I can't imagine feeling the way I do now with Hashi's for the rest of my life, with it seeming to get worse very slowly. I'm curious if anyone on here has had a different treatment plan that has helped them, or even had their thyroid removed due to the Hashi's? Have you noticed anything that has helped with your symptoms or flare-ups?

I'd be glad to hear from any other Hashi-sufferer.

Thanks for taking the time to read this post - be well :)
 

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Welcome to the board!

Do you have any labs ( with ranges) you would like to share?

What medications and doses do you currently take?

Has anyone suggested you to have an ultrasound of your thyroid? Might be a good idea.
 

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Discussion Starter · #3 ·
Welcome to the board!

Do you have any labs ( with ranges) you would like to share?

What medications and doses do you currently take?

Has anyone suggested you to have an ultrasound of your thyroid? Might be a good idea.
 

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Discussion Starter · #4 ·
Thanks for replying!

My TPO antibodies are high at 64, with the normal range being 0 - 34. Thyroglobulin Antibody is at 53.7, with the normal range 0 - 0.9. TSH has always been normal for me. My current dose of Synthroid is 25mcg. It was previously at 75mcg, but I had switched doctors and was told this dose was a bit high for me (after finding my TSH went super low by the different doctor). 25mcg has been great for a few years and I've had little symptoms until recently.

I'd be curious to see what the antibody levels are during a flare-up - that is, when I get the tightness and lump in my throat, whole body of hives, puffy eye lids, and general feeling of being unwell.. I'm assuming they would be even more elevated.

Yes - I had a thyroid ultrasound once when I was first diagnosed (5 years ago). So, it's been a few years. I was also thinking it would be a good idea to have another one done. I'm actually going to ask the new endo about that when I visit later this month.
 

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It would be a really great idea to do another u/s.

Are they only testin TSH or do they ever test free t4 and free t3?
 
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You absolutely need to have an ultrasound.
 

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I too am suffering from occasional Hashimoto's "flares". Ever few weeks a flare will come on making me miserable! 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 of. 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 have 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. The bad thing is NONE of this happens overnight! He 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. Good luck finding help - this is such a challenge!
 

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I too am suffering from occasional Hashimoto's "flares". Ever few weeks a flare will come on making me miserable! 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 of. 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 have 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. The bad thing is NONE of this happens overnight! He 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. Good luck finding help - this is such a challenge!
Do you have any FT-4 and FT-3 lab results you could share?
 

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Discussion Starter · #9 ·
Hi sroth2407,

So sorry to hear you aren't feeling well due to the "flares." I know just how miserable they are. From my experience, it takes several weeks for medication (specifically Synthroid) to be effective to the point it keeps flare ups at bay. It feels a lot like a waiting game to notice any improvement, with little that can be done in between. I think it's definitely plausible your body is still adjusting to the autoimmune protocol. That said, I sincerely hope you see improvement very soon! I don't wish Hashi suffering on anyone; it is absolutely exhausting and heartbreaking to feel your body decline like that.

I realize I haven't posted on here in about a year. However, since then, I was hospitalized shortly after seeing a new endo, who I thought would be able to help with the Hashi's. I had a severe flare-up, with my resting heart rate at a steady 190 BMP for at least two days, which was more than enough to scare the nurses and doctors at the hospital I visited, ultimately resulting in admission to the hospital for two days. What a waste of time. The doctors had no clue about Hashimoto's, and thought the problem was with my heart not functioning properly. I explained to them that my rapid heart beat was a symptom of the flare-up that Hashimoto's causes, but they refused to believe me. Needless to say, my new endo at the time said she would pay me a visit at the hospital to talk about new treatment (her office is adjacent to the hospital), but she never showed or was in contact with me again. Never went back to her office after that. My primary care doctor has been looking after me with new treatment suggestions and close monitoring of my blood and symptoms. I've been feeling pretty good the past few months, fortunately! I think our bodies just need time to adjust to new treatment, and then they seem to change every few years, again needing to adjust to something new or a stronger medication again.

I wish you the very best of health and hope you feel better. Please, keep in touch with how you are feeling and what treatment seems to work best! I think all of us Hashi-sufferers can benefit from hearing what has worked for others.

Be well!
 

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. I had a severe flare-up, with my resting heart rate at a steady 190 BMP for at least two days, which was more than enough to scare the nurses and doctors at the hospital I visited, ultimately resulting in admission to the hospital for two days.
Have you ever been tested for TSI antibodies?
 
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