[careb]

#1060467

Hello, I am new here. Has anyone found a way to make antithyroid dosing adjustments less miserable. Are there tricks to helping your body cope with the shifting hormones and adjustments of the medication dosage? I seem to be very sensitive to the methimazole. I thought I was good on 7.5 mg but my original endocrinologist thought it was not enough so I worked my way up to 15mg and became hypo which is miserable enough….my new endo is backing me back down to a lower dose which I know will be better but holy cow am I miserable this week. Migraine auras, headaches, don’t want to talk to anyone, don’t want to do anything but don’t want to lie in bed either…I’m just a JOY to be around…not. Does anyone have any tips on making the med transitions/hormone shifts easier? I had same/worse issues increasing dose as well and I know it is going to take some tweaking to get it right and keep it right so any help/tips/pointers anyone has I would sure appreciate.

Thank you,
CAREB 40 year old female, wife, mom, business owner Dx Graves 11/2014 after hyper symptoms for a couple of months, 7/2014 HYPO from ATD.

[Raspberry]

#1182790

I have this problem as well even with very small dosage changes. My endo has said it’s because I’m unusually sensitive to thyroid hormones. Dosage changes up or down bring at least a week of a hell for me. If it is a downward change the hell feels like being hyper even though I’m not and I take a little beta blocker during that time if it gets bad for fast heart rate and nerves. I try to take the absolute minimum dose that helps because it is temporary and then I have to wean off of that once it’s not needed anymore. For upward dosage changes I just accept I won’t be able to do much of any activity and will have joint pain for about a week. The worst I’ve had the change symptoms go is two weeks but usually it’s just one week. Good luck!

Oh and caffeine – for the temp hypo period I do indulge quite a bit. There are probably healthier options out there for stimulants though.

[careb]

#1182791

Hi Raspberry and Thank YOU so much for the response. I am such a caffeine addict but I try to avoid any after noon so I will try cutting myself some slack the next few days and just drink the caffeine. I have noticed an upswing today…still super tired and didn’t feel like running at the gym but at least once I made myself jog my heart rate got over 110…the past month even at a sprint it would not go up so I hope this is a good sign that my body is starting to adjust to the dose shift. I definitely reacted FAST on the way UP in dosage so I guess I am being impatient that it has not even been a week going down in dosage and I’m not feeling a faster change.

[Kimberly]

#1182792

Hello – A couple of thoughts…

1. Hopefully, your doc is basing dosing changes off of Free T4 and T3 and not just TSH, per the latest medical guidance. TSH can remain suppressed for quite some time, so if you wait for that to respond, you can end up with a huge swing from hyper to hypo.

2. If your levels respond quickly to dosing changes (mine do), don’t be afraid to remind your doctor of this. He/she might agree to a smaller dose change with a quicker recheck.

Hope you can find that “sweet spot” soon!

[SueAndHerZoo]

#1182793

I’m in the same club, but opposite medication….. I have this problem with my Levothyroxine. Every time we have changed doses (probably 5 times since I had my thyroid removed one year ago) I have felt it. It’s pretty much become a pattern now: I don’t notice anything until about a week to 10 days, and THEN I go through hell for about 3-4 weeks. Tired, antsy, depressed, cranky, irritable, emotional, sick to my stomach, feel like I’m coming down with something, etc. It has happened too many times for it to be coincidence. I just changed doses again yesterday so I’ve already warned my husband what’s coming.

How do I get through it? The first thing I’ve done for the last 2 changes is to make the change TINY. Maybe it takes twice as long to get to the right level, but at least it’s not a horrific ride getting there. Whatever number my doc told me to drop down to, I only drop HALF that amount. Then I’ll have blood drawn and, if needed, go down a tiny bit more.

The other thing I do is warn people, including myself, NOT to get upset or take anything personally during this time period. And I try to get lots of sleep – being tired while going through the hormonal shift is double trouble. I used to beat myself up trying to figure out why I was feeling lousy and now I just remember “Oh yeah, it’s the dose change – this too shall pass.”

Hopefully we’ll all find our sweet spots soon and be able to get off this ride. Good luck!
Sue

[scanders]

#1182794

Wow, I could have written that original post. I’ve been trying to figure out why I’ve been feeling so lousy the last few days. While I’ve been heading hypo, I’ll bet it’s as much or more this last dose change. I’m going to try the caffeine tomorrow. Right now, I’m giving myself permission to just take it easy this evening. I’ve ‘fessed up to my family that I don’t feel well, and they’re cooking dinner! (My assistant told me to go home earlier today because she said she could tell I wasn’t feeling well. I thought I was hiding it so well…)
As always, good insight and good ideas here!

[Raspberry]

#1182795

Hi Careb! Just to clarify, caffeine is only your friend when you are fighting transient hypo symptoms (sluggish, sleepy, fogged up) during adjusting to the methimazole being raised. If you are having transient hyper symptoms (fast heart, anxiety) due to the methimazole being lowered beta-blockers are your friend and caffeine is bad. I hope you feel better soon!

[Raspberry]

#1182796

Hi Sue, has your endo ever explained anything about why the adjustment is so hard??? Mine just says I’m sensitive but I wish I could do more about it! Great advice on taking nothing personally during the adjustment time – I’ve gotten myself into trouble with that one cause it all seems so real

[careb]

#1182797

Hi and thank you all. Yes I FINALLY found an endo who understands to check free t4 and t3. I read a lot early on in this and every time I went it was still a fight to get the right labs ordered So I am glad to have found an endocrine dr who knows more about thyroid.

I’m forever trying to get off the caffeine and cut way back when I was hyper lol but it seemed to be a good strategy to keep me awake today while I am still hypo. my exercise heart rate (pre caffeine) was back to more reasonable rate so think the dosage shift is already helping. I also slept way more than usual past 3 days and made it all day today with no nap. Yeay.

I’m so happy to see others who have to do the changes gradually…I increased in 2.5 mg increments so it makes sense I might should decrease at those increments as well BUT I am probably more inclined to hurry it up on way down because I hate feeling hypo more than I hate the transition misery.

I’m planning to ask my endo at next appt why the transition is so hard. I’m sure the hormone shift when already feeling off makes sense but seems like maybe they have some ideas to make it better that don’t involve hiding from my family lol. I do think it is a good idea to warn people. I did that a lot when I was hyper so probably good to also do now.

Thank you

[SueAndHerZoo]

#1182798

Raspberry wrote:

Hi Sue, has your endo ever explained anything about why the adjustment is so hard??? Mine just says I’m sensitive but I wish I could do more about it! Great advice on taking nothing personally during the adjustment time – I’ve gotten myself into trouble with that one cause it all seems so real

No, he doesn’t even officially acknowledge that I’m feeling effects of the dose changes. He kind of shrugs it off, doesn’t think such a minor change in a drug with such a long half-life could do that, so I don’t even talk about it anymore. “I” certainly know it’s real, and lots of others here have verified that it IS possible to feel it.

I must be pretty darned sensitive to Levo because ever since my TT last July, we have kept lowering the dose and I think we’ll be doing that quite a bit longer till I get to a good point. M TSH was all the way up to .04 last week! LOL
Sue

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