Levothyroxine - dose increase side effects.

[dsmith]

My latest thyroid bloodwork was absolute garbage, so my Dr. has increased my dose by 25 mcg this week and an additional 25 mcg next week. I'm 3 days in, and I woke up to restlessness, anxiety, racing thoughts, inability to concentrate and an elevated blood pressure. Anyone else have this issue when increasing your dose? I'm hoping it's a temporary thing! I was worried about palpitations - that happened last time I had an increase so I was kept at the lower dose. I've since cut out all caffeine, and my doctor has me taking 180 mg of magnesium 3 times a day, so I haven't had any palpitations at all, but the way I'm feeling I'm kind of surprised. My care manager has me increasing my water intake and taking it easy for the next few days, but I did put a message through to my doctor. I've done a few meditations in one of my phone apps that helped a bit, but I'm a bit concerned about the blood pressure. I may ask to hold off for a while on the second increase. I haven't been this jittery in a while. It's affecting my stomach a bit, too, kind of a roiling butterfly feeling, like I have to stand up in front of a crowd and talk, lol. Ugh!

[KSera]

That sounds super unpleasant! Those sound like symptoms of being overmedicated and tipping into hyperthyroid, I don’t know if that is typical to happen as a transient phase while you’re adjusting to a new dose. That has never happened to the hypothyroid person in our family, even with multiple dose increases. Any chance you added any other supplements at the same time? Methylated B vitamins??

[prairiewindmomma]

When I was re-regulating post pregnancy, I had this happen once. My endo had me alternate new dose old dose for a couple of weeks to see if that helped me symptomatically. I havent had that happen outside of pregnancy though (pregnancy makes the thyroid more unstable for various reasons).

[gardenmom5]

What tests did they run?

Are you being dosed off TSH? (Pituitary hormone)

Have you had your FREE T4 (levo replaces) checked?

Have you had you FREE T3 checked?  (Active form)

How about Reverse T3?

Then the very connected but often ignored.. 24 hr saliva spit test for cortisol.

 

 

 

 

[dsmith]

6 hours ago, KSera said:

That sounds super unpleasant! Those sound like symptoms of being overmedicated and tipping into hyperthyroid, I don’t know if that is typical to happen as a transient phase while you’re adjusting to a new dose. That has never happened to the hypothyroid person in our family, even with multiple dose increases. Any chance you added any other supplements at the same time? Methylated B vitamins??

I'm already taking methylated B vitamins. I'm really hoping this is a temporary thing! 

[dsmith]

4 hours ago, prairiewindmomma said:

When I was re-regulating post pregnancy, I had this happen once. My endo had me alternate new dose old dose for a couple of weeks to see if that helped me symptomatically. I havent had that happen outside of pregnancy though (pregnancy makes the thyroid more unstable for various reasons).

I think I was hyper while I was pregnant, but I wasn't diagnosed at that point. I am coming off of a Hashimoto's flare, the first time I can honestly say I'm in a flare. I may ask about alternating, thanks! 

[dsmith]

4 hours ago, gardenmom5 said:

What tests did they run?

Are you being dosed off TSH? (Pituitary hormone)

Have you had your FREE T4 (levo replaces) checked?

Have you had you FREE T3 checked?  (Active form)

How about Reverse T3?

Then the very connected but often ignored.. 24 hr saliva spit test for cortisol.

 

 

 

 

I had everything tested except reverse T3. TSH was high, FT3 and FT4 were low, TPEX and TGAB were high. Selenium and copper were also high. The one cortisol test I did was low, but it wasn't the 24 hour one. I am doing that one in a week or two. My doctor also wants iodine and iron/TIBC/ferritin tested. I am in the middle or the end (I hope) of a flare, which I don't think I've experienced before. It's hard for me to tell sometimes with the overlap in symptoms with different autoimmune diseases. But my blood pressure tonight at rest was 145/100. I don't feel as jittery and anxious as I did earlier today. I'm curious if I will feel like that after I take my dose tomorrow, and I'm really hoping I don't!

[Ann.without.an.e]

3 minutes ago, dsmith said:

I had everything tested except reverse T3. TSH was high, FT3 and FT4 were low, TPEX and TGAB were high. Selenium and copper were also high. The one cortisol test I did was low, but it wasn't the 24 hour one. I am doing that one in a week or two. My doctor also wants iodine and iron/TIBC/ferritin tested. I am in the middle or the end (I hope) of a flare, which I don't think I've experienced before. It's hard for me to tell sometimes with the overlap in symptoms with different autoimmune diseases. But my blood pressure tonight at rest was 145/100. I don't feel as jittery and anxious as I did earlier today. I'm curious if I will feel like that after I take my dose tomorrow, and I'm really hoping I don't!

 

Some general thoughts since I've had Hashi's for a very long time. This may settle. If not then def follow up with the doctor and ask for their thoughts. 

Iodine can be a no-no for many with Hashimoto's. For me, anything that triggers my thyroid to work harder is a hard no as it causes a flare. Also, since I struggle with autoimmune stuff in general, anything that causes the immune system to work better is a hard no for me. Ashwagandha is something that people say will help thyroid but it causes a terrible autoimmune flare in me as does other herbs or supplements that help to beef up the immune system. 

 

Just some random thoughts I had. 

[KSera]

1 hour ago, dsmith said:

I'm already taking methylated B vitamins. I'm really hoping this is a temporary thing! 

How long have you taken the methylated ones? That’s actually why I was asking because methylated Bs can cause anxiety and jitteriness for some people (those with slow COMT is my understanding). But if you’ve been taking the same ones for a long time, then that doesn’t sound related. 

[dsmith]

57 minutes ago, Ann.without.an.e said:

 

Some general thoughts since I've had Hashi's for a very long time. This may settle. If not then def follow up with the doctor and ask for their thoughts. 

Iodine can be a no-no for many with Hashimoto's. For me, anything that triggers my thyroid to work harder is a hard no as it causes a flare. Also, since I struggle with autoimmune stuff in general, anything that causes the immune system to work better is a hard no for me. Ashwagandha is something that people say will help thyroid but it causes a terrible autoimmune flare in me as does other herbs or supplements that help to beef up the immune system. 

 

Just some random thoughts I had. 

I don't think she wants to put me on iodine, so I'm not sure why she was testing. I don't think I get much iodine in my diet, so I'm not worried about it being high. I've wondered about the recommendation for ashwagandha for people with Hashi's. I hear some say it regulates the immune system, others that it stimulates it. I avoid anything that stimulates my immune system! My worst MS flare before diagnosis was after taking large doses of elderberry when I was sick. That was a very long recovery!

[dsmith]

7 minutes ago, KSera said:

How long have you taken the methylated ones? That’s actually why I was asking because methylated Bs can cause anxiety and jitteriness for some people (those with slow COMT is my understanding). But if you’ve been taking the same ones for a long time, then that doesn’t sound related. 

I've been taking them for at least 5 years now. I've never heard of slow COMT before - I learn so much on this board!

[KSera]

5 minutes ago, dsmith said:

I've been taking them for at least 5 years now.

Oh I would totally discount that then. After having an experience with it, I always like to mention because there’s often an impression that methylated is always better. Carry on!

[PeterPan]

4 hours ago, dsmith said:

copper were also high.

How is your zinc? It balances copper, so you might find it could pull that down. I've read stories about people having high copper from their water. You might try tracking that down, because it pushes things and can cause weird problems (candida, etc.). How are your iron and b12? Iron definitely affects thyroid (which is ironic because it will also bind your meds) and what is running high on you are minerals that are used to absorb iron. Just thinking out loud about ways to look.

There are some studies showing more even TSH when people take their T4 only meds at night instead of in the morning. I've done my meds (ndt) for years and years this way. 

 

[PeterPan]

4 hours ago, dsmith said:

Selenium

Do you eat brazil nuts or other food sources?

[dsmith]

8 hours ago, PeterPan said:

How is your zinc? It balances copper, so you might find it could pull that down. I've read stories about people having high copper from their water. You might try tracking that down, because it pushes things and can cause weird problems (candida, etc.). How are your iron and b12? Iron definitely affects thyroid (which is ironic because it will also bind your meds) and what is running high on you are minerals that are used to absorb iron. Just thinking out loud about ways to look.

There are some studies showing more even TSH when people take their T4 only meds at night instead of in the morning. I've done my meds (ndt) for years and years this way. 

 

My doctor told me to take zinc because it would lower the copper, but I haven't had it tested. My B12 was within normal range but on the lower end. I'm still waiting to do the iron blood work. My doctor gave me so much blood work at once, and it was going to cost a fortune! I tried taking Levo at night for about a week last year, and I was waking up in the middle of the night feeling like I was in the middle of a panic attack. I'm wondering if I would do better on ndt. My doctor would prescribe it if I wanted it. 

[dsmith]

8 hours ago, PeterPan said:

Do you eat brazil nuts or other food sources?

No, I don't think I get enough in my food to make it that high. I had been using it on my feet after someone told me it helped their eczema. My doctor thinks that was the cause. I thought I read something about methylation issues and high selenium, but I haven't investigated further yet.

[PeterPan]

8 hours ago, dsmith said:

My B12 was within normal range

I find I feel better when I take b12 when my numbers are like that. Note it needs to be sublingual and that the type (methylated vs. other forms) depends on your genetics. 

8 hours ago, dsmith said:

My doctor told me to take zinc because it would lower the copper,

Exactly. And even inexpensive zinc, like the $4 a bottle bogo stuff at Kroger, works great. I suggest jumping up to 50mg because it's so cheap, getting your copper under control, and then backing off if you have symptoms of your zinc going too high (nausea). Then you can skip a day just to let it stabilize and go down to a 30mg or 22mg or whatever you find is enough to keep you steady. 

Your zinc may run low naturally because of something inherent like a zinc transporter gene issue. In that case, continuing to take it would be beneficial.

8 hours ago, dsmith said:

I tried taking Levo at night for about a week last year, and I was waking up in the middle of the night feeling like I was in the middle of a panic attack. I'm wondering if I would do better on ndt. My doctor would prescribe it if I wanted it. 

Is this a very high dose of the t4 only med? For me personally, when I've taken my thyroid meds (ndt) up higher I feel better with the doses divided. 

I'm thinking about this and there might be a really basic, logical explanation. Your selenium is crazy high and selenium activates that t4 conversion to T3. That t3 is what is giving you the heart symptoms. So to get this stabilized, you need that selenium to go down and pronto.

8 hours ago, dsmith said:

I had been using it on my feet after someone told me it helped their eczema. My doctor thinks that was the cause. I thought I read something about methylation issues and high selenium, but I haven't investigated further yet.

Selenium on your feet???

If you're having eczema, do you think it could be connected to low zinc? You might, as a side thing, consider whether you have an issue with biotin which is also involved in skin healing. But in general, maybe get that zinc up to get the copper down, drop anything raising your selenium right now, and then see where you're at. Maybe try taking your t4 med in divided doses to see if you can calm the t4 to t3 conversion rush you're having. That owuld happen with a T3 continuing med possibly even WORSE because you'd be getting t3 directly AND converting from your unusually high selenium.

Sorry this is happening. Doesn't sound fun.

[prairiewindmomma]

Atopic eczema is generally tied to a leaky skin barrier. A good chunk of people with eczema just inherited bad genetics….their bodies dont produce enough filaggrin. You can use barrier creams and moisturizers (particularly those with ceramides) to try to seal stuff up—-but selenium sulfide (I am guessing that’s what your friend used) is for seborrheic dermatitis—not going to be much help if you’re lacking filaggrin.

[dsmith]

On 7/12/2024 at 9:35 PM, prairiewindmomma said:

Atopic eczema is generally tied to a leaky skin barrier. A good chunk of people with eczema just inherited bad genetics….their bodies dont produce enough filaggrin. You can use barrier creams and moisturizers (particularly those with ceramides) to try to seal stuff up—-but selenium sulfide (I am guessing that’s what your friend used) is for seborrheic dermatitis—not going to be much help if you’re lacking filaggrin.

No, it was definitely atopic, and yes, selenium sulfide (Selsun Blue). I thought it was weird, but other people on various sites also mentioned it helping them. Having it on the bottom of the feet makes me try just about anything, lol. The annoying thing is that it was helping. I only used it every 4-6 days for maybe 5 weeks, and I was leaving it on for 5 minutes and then rinsing. Honestly, I'm not even sure if that's the correct diagnosis. My dermatologist wasn't sure and I haven't been back - he didn't make me feel very confident in his ability to treat me. I'm looking for a new one but appointments are 4 months out. 

[prairiewindmomma]

Ask about tacrolimus cream if you havent tried it yet. It’s not a steroid, and it’s been amazing for atopic eczema here in the mild-moderate. (Severe eczema = biologic here.)

[dsmith]

On 7/12/2024 at 8:40 PM, PeterPan said:

I find I feel better when I take b12 when my numbers are like that. Note it needs to be sublingual and that the type (methylated vs. other forms) depends on your genetics. 

I haven't tried the sublingual yet, it's in my B-Complex. It is methylated.

Exactly. And even inexpensive zinc, like the $4 a bottle bogo stuff at Kroger, works great. I suggest jumping up to 50mg because it's so cheap, getting your copper under control, and then backing off if you have symptoms of your zinc going too high (nausea). Then you can skip a day just to let it stabilize and go down to a 30mg or 22mg or whatever you find is enough to keep you steady. 

I started at 25 for a few days and then went up to 50. I think I'm at this dose for a few weeks barring any negative reactions.

Your zinc may run low naturally because of something inherent like a zinc transporter gene issue. In that case, continuing to take it would be beneficial.

Is this a very high dose of the t4 only med? For me personally, when I've taken my thyroid meds (ndt) up higher I feel better with the doses divided. 

It was a 50 mcg dose at the time. 

I'm thinking about this and there might be a really basic, logical explanation. Your selenium is crazy high and selenium activates that t4 conversion to T3. That t3 is what is giving you the heart symptoms. So to get this stabilized, you need that selenium to go down and pronto.

I'm hoping the heart symptoms improve as my selenium goes down. Dr. also thought the copper may be adding to it. But I also wonder if this is related to covid, because it was after covid that I had to quit caffeine due to palpitations. I always had a bit of an issue, but I could tolerate 2 - 3 cups of tea/coffee. Now I can tolerate about 3 oz of coffee. 

Selenium on your feet???

If you're having eczema, do you think it could be connected to low zinc? You might, as a side thing, consider whether you have an issue with biotin which is also involved in skin healing. But in general, maybe get that zinc up to get the copper down, drop anything raising your selenium right now, and then see where you're at. Maybe try taking your t4 med in divided doses to see if you can calm the t4 to t3 conversion rush you're having. That owuld happen with a T3 continuing med possibly even WORSE because you'd be getting t3 directly AND converting from your unusually high selenium.

Sorry this is happening. Doesn't sound fun.

Thanks for your input! I had been afraid to divide my dose because of past experience taking it at night, but what you're saying makes sense. I speak to my doctor hopefully tomorrow, so I will ask her about dividing it. I did read about a zinc/eczema connection - I'm hoping getting my zinc up helps! 

 

[PeterPan]

1 hour ago, dsmith said:

I started at 25 for a few days and then went up to 50. I think I'm at this dose for a few weeks barring any negative reactions.

You could actually take the zinc a little higher. Not for a crazy long time, but for a while. Maybe try divided doses, so 50 mg at night and another 25mg in the morning. If you get zinc too high, it causes nausea. At that point you just pull back for a day and then resume at a lower dose. 

After I've had covid I've needed to take my zinc up pretty high, so I was doing say 50mg at night, 30mg in the morning. Then after a while you could feel that the body was rebuilding and I was able to start lowering it, bit by bit. 

1 hour ago, dsmith said:

I also wonder if this is related to covid, because it was after covid that I had to quit caffeine due to palpitations.

Whoa, back up. Covid both strips your body of a bunch of minerals and vitamins, including zinc, b1, iron, biotin, etc, AND it causes inflammation that can affect the heart, etc. 

So yes, if you had covid and dropped your already low zinc, you could set off this cascade. I was just describing to you that after covid I had to *triple* my zinc intake. My normal daily before covid was 22mg nightly. Actually I used to take *½* that tablet each day and be fine. My last round of covid was a couple months ago and I'm still up at 50mg a day. 

I'm not a doctor, just saying that's how it rolls for me. Do your research. But zinc is pretty easy to titrate up as you just watch for nausea and back off. It's pretty obvious when it's too high.

1 hour ago, dsmith said:

haven't tried the sublingual yet, it's in my B-Complex. It is methylated.

B12 is much better absorbed sublingually. KAL makes a variety of verions that are sublingual and dissolve quickly. You can get them on amazon, easy peasy.