Thyroid levels jumping up. What to do?

[Wonderful.Cheese]

Is this right spot for thyroid talk? I’m confused lately, sorry guys.

My TSH was 0.87 in September 2019. Now it’s 2.66! I am freezing cold all the time even when it’s 80:degrees out. If I’m inside with air conditioning I’m wearing long pants and under a warm winter blanket. I am gaining weight. More tired lately. Some battles with constipation. (Sorry if TMI). Etc. All the damn higher TSH symptoms basically. I know that my number is within the “normal” range but I felt MUCH better symptom wise when it was like 0.87 TSH. 

Will I need increases of doses of synthroid for life? I was feeling so good before and then lately I noticed I was gaining weight and freezing all the time etc and got my TSH results a few days ago and found out it had jumped up. Screw Hashimoto’s disease. It can go jump in a lake. I don’t want my TSH to get any higher. Ugh. 

[Iceberg]

5 hours ago, Wonderful.Cheese said:

Is this right spot for thyroid talk? I’m confused lately, sorry guys.

My TSH was 0.87 in September 2019. Now it’s 2.66! I am freezing cold all the time even when it’s 80:degrees out. If I’m inside with air conditioning I’m wearing long pants and under a warm winter blanket. I am gaining weight. More tired lately. Some battles with constipation. (Sorry if TMI). Etc. All the damn higher TSH symptoms basically. I know that my number is within the “normal” range but I felt MUCH better symptom wise when it was like 0.87 TSH. 

Will I need increases of doses of synthroid for life? I was feeling so good before and then lately I noticed I was gaining weight and freezing all the time etc and got my TSH results a few days ago and found out it had jumped up. Screw Hashimoto’s disease. It can go jump in a lake. I don’t want my TSH to get any higher. Ugh. 

Do you have an endocrinologist?

[notloki]

This is a job for an endocrinologist. Don't mess with you thyroid, it controls many things. If you have to increased so be ir. 

[CrazyRedhead]

I agree with others that this is something you need to see an endocrinologist for.

[sugarsugar]

Sorry your thyroid isn’t cooperating. I have the same thyroid diagnosis but I’ve been ok—if you are having problems I do think it may be time for an endocrinologist, if you aren’t seeing one. Thyroid issues can be complicated. 

[Wonderful.Cheese]

I’m sorry. I should have mentioned that I do see an endocrinologist but did ask if my primary dr would take over my thyroid med. Maybe that’s a bad idea. Now I’m not sure.

I’m not playing with my dosage of synthroid. I have a message in to my dr.

I was just wondering if anyone has had to continuously up their thyroid pill dose (with dr permission) or if you sort of settle on a dose and are good to go pretty much. I was just looking for others with experience with taking thyroid med and how that went for them.

again sorry for the lack of clarity. I’m spacey cloudy lately. 

[sugarsugar]

I’ve been on a stable dose for years, despite my TSH changes. Now my TSH is at the low edge, so possibly could mean to go down on the synthroid, but we’re going to keep it the same. I don’t feel like my dose is too high. Also, I take my synthroid at night whether I eat or not, but supposedly you shouldn’t take near food. Also I hear you should avoid iron within an hour too but I ignore all rules. Plus I hear soy isn’t good with thyroid issues. I eat some soy sometimes. So that’s me, but maybe you’re more sensitive to those things?  If your dose isn’t stable I would think an endocrinologist might be the better choice. I think my thyroid just gets ignored, but sounds like you need someone thyroid savvy. My personal experience is I get told my wt and thyroid are unrelated but I’m not so sure. Not sure if you get that, too. 
 

also, fwiw, some things I attributed to thyroid improve when I keep my vit D up in a good range, don’t know if your D levels get low, too and cloud the picture. Something to consider anyway. 

Edited July 5, 2020 by sugarsugar
Another thought

[Wonderful.Cheese]

On 7/4/2020 at 9:24 PM, sugarsugar said:

I’ve been on a stable dose for years, despite my TSH changes. Now my TSH is at the low edge, so possibly could mean to go down on the synthroid, but we’re going to keep it the same. I don’t feel like my dose is too high. Also, I take my synthroid at night whether I eat or not, but supposedly you shouldn’t take near food. Also I hear you should avoid iron within an hour too but I ignore all rules. Plus I hear soy isn’t good with thyroid issues. I eat some soy sometimes. So that’s me, but maybe you’re more sensitive to those things?  If your dose isn’t stable I would think an endocrinologist might be the better choice. I think my thyroid just gets ignored, but sounds like you need someone thyroid savvy. My personal experience is I get told my wt and thyroid are unrelated but I’m not so sure. Not sure if you get that, too. 
 

also, fwiw, some things I attributed to thyroid improve when I keep my vit D up in a good range, don’t know if your D levels get low, too and cloud the picture. Something to consider anyway. 

Thank you for sharing your experience! Yeah, maybe sticking with my endocrinologist is best. Interesting that you take it at night. I always take it AM because my pharmacist said to and said not with other meds but I do anyway. I don’t know. It’s hard with the nuvigil which I need to wake me up. So I can’t wait 2 hours to take that! I don’t know a proper solution. I’ve tried both ways. So I ignore some rules too.

I just had a bunch of labs and I do take a multivitamin so I think that my vitamin D should be ok? But it is something I can ask about When I see my dr again for sure.

Thanks again!

[sugarsugar]

I take all my meds together because if I waited for one I’d be sure to forget it. After all, I do have other things to do. On vit D, I take 5,000 units 5 days/week to stay normal but not high. If I quit, I drop down to low normal or below and get very low energy. That seems like a lot but maybe avoiding the sun contributes to that. I’ve had lifelong thyroid issues and do what works for me, only recently did I hear all the rules. Apparently my system works so I’m not changing. Is that bad?  I’m just doing good to take everything daily, so unless I really need the rules, well, I wonder how important they are for me. Not that I think everyone should do that, of course. 

[mikl_pls]

I started with I believe 50 mcg Synthroid based on my levels and increased gradually up to 150 mcg with blood work and consistent checkup visits. That's where I settled. I'm actually technically in hyperthyroid by my TSH levels, which are extremely suppressed, but for some reason my T3 and T4 levels aren't keeping up for whatever reason, so I need the extra Synthroid to supplement. I think it was because I was on Trileptal which lowers T3 and T4 levels. I'm not on that anymore, and I haven't been on Synthroid in months, nor have I had any blood work in that long. I just called my endocrinologist and asked for an appointment because they never called me for my last supposed appointment (I guess 'cause I didn't get the blood work done), and I'm out of both Synthroid and Ozempic (diabetes medicine). We'll see what my thyroid levels are doing now that I'm off of Trileptal. I may not even need Synthroid anymore, though it's nice to have for depression (it classically is used as an augmenting agent for depression, especially bipolar depression, as apparently many bipolar people are also subclinically hypothyroid).

[Wonderful.Cheese]

4 hours ago, sugarsugar said:

I take all my meds together because if I waited for one I’d be sure to forget it. After all, I do have other things to do. On vit D, I take 5,000 units 5 days/week to stay normal but not high. If I quit, I drop down to low normal or below and get very low energy. That seems like a lot but maybe avoiding the sun contributes to that. I’ve had lifelong thyroid issues and do what works for me, only recently did I hear all the rules. Apparently my system works so I’m not changing. Is that bad?  I’m just doing good to take everything daily, so unless I really need the rules, well, I wonder how important they are for me. Not that I think everyone should do that, of course. 

Thank you again. Hey, if it works it works as they say!

[Wonderful.Cheese]

2 hours ago, mikl_pls said:

I started with I believe 50 mcg Synthroid based on my levels and increased gradually up to 150 mcg with blood work and consistent checkup visits. That's where I settled. I'm actually technically in hyperthyroid by my TSH levels, which are extremely suppressed, but for some reason my T3 and T4 levels aren't keeping up for whatever reason, so I need the extra Synthroid to supplement. I think it was because I was on Trileptal which lowers T3 and T4 levels. I'm not on that anymore, and I haven't been on Synthroid in months, nor have I had any blood work in that long. I just called my endocrinologist and asked for an appointment because they never called me for my last supposed appointment (I guess 'cause I didn't get the blood work done), and I'm out of both Synthroid and Ozempic (diabetes medicine). We'll see what my thyroid levels are doing now that I'm off of Trileptal. I may not even need Synthroid anymore, though it's nice to have for depression (it classically is used as an augmenting agent for depression, especially bipolar depression, as apparently many bipolar people are also subclinically hypothyroid).

Thank you for sharing! Good luck with your next appointment and lab draws! I hope you won’t need synthroid anymore. That would be nice!

I didn’t know you were diabetic. Are you type 2? My mom is type 2 and my grandpa and my brother were type 1. Both my grandpa and my brother have passed away sadly. I somehow manage to evade it even with zyprexa in my system.

Anyway, sorry to derail. A messed up thyroid really is no fun at all. And my GP still hasn’t gotten back to me ugh 

 

[mikl_pls]

50 minutes ago, Wonderful.Cheese said:

Thank you for sharing! Good luck with your next appointment and lab draws! I hope you won’t need synthroid anymore. That would be nice!

I didn’t know you were diabetic. Are you type 2? My mom is type 2 and my grandpa and my brother were type 1. Both my grandpa and my brother have passed away sadly. I somehow manage to evade it even with zyprexa in my system.

Anyway, sorry to derail. A messed up thyroid really is no fun at all. And my GP still hasn’t gotten back to me ugh 

 

I'm pre-diabetic, and it's well under control, so I shouldn't have anything to worry about (yet). When I become diabetic, it will be type 2, and it's definitely a matter of when, not if.

You're like my brother... You got lucky... lol

[Wonderful.Cheese]

Finally got an answer. I am to increase my synthroid to 75 mcg. Hopefully this helps!

[Blahblah]

2 hours ago, Wonderful.Cheese said:

Finally got an answer. I am to increase my synthroid to 75 mcg. Hopefully this helps!

Do you have Hashimotos? A  TSH of .87 actually sounds really low... I don't think I've ever had such a low number, even as a child/teen.

TSH 2.66 is good (according to all my docs). I was told I was only slightly "borderline" hypo when my TSH went over 5 (and I was cold, constipated, sleeping all day). They looked at me funny, because I'm nearly underweight (my docs said hypo typically causes weight gain). They would only put me on up to 25 mcg Levothyroxine. Within about 1 year, it slowly went down to 2.5...then I moved, switched docs and went off it because I didn't feel much different.

For many years (20s-30s) unmedicated, it hovered around 1.5. Now it's around 2.5 - 2.7, while I'm not on anything for it. My weight hasn't changed much in 3 decades, I've always had lowest/normal BMI, but remain extremely fatigued...I wonder if I should ask to try the med again...?

Edited July 7, 2020 by Blahblah

[notloki]

vitamin D deficiency is very common, a level of 20 nanograms/milliliter to 50 ng/mL is considered normal. I was in the single digits when I was first tested. I now take 3,000 IU a day, every day and get a reading in the higher 20/s. I would like to be higher.

[browri]

On 7/17/2020 at 1:22 AM, notloki said:

vitamin D deficiency is very common

and for many also really hard to treat too. Absorption can be a real problem. I have to take 5,000IU daily with 10,000IU on Saturday and Sunday and my last check in end of June was 49ng/mL. Used to be in the high teens to low 20s. Correcting it has really helped my mood in tandem with fish oil and meds.