Anyone want to make me feel better about thyroid TSH and Vitamin D?

MsAmandaPants · January 2014

I have an autoimmune thyroid condition (basically pre-Hashi's).. I'm on a low dose of Synthroid. All of the sudden about two months ago, my TSH totally bottomed out to nearly non-existent, so we tweaked my dose ever so slightly. Last draw was .64 and looking good. Fast forward a month and now it is back up to 2.5. We are re-upping my Synthroid, but I know my RE wanted to keep it under 2, so I am freaking out a little bit.

Also, I tend to run really low on Vitamin D. Nearly every year I have to go on a prescription mega dose to get my level back up and I have to supplement with a minimum of 2000 units a day to keep it steady. When I got pregnant, they told me not to exceed 1000 units a day. As a result, my limits are dropping. In just three weeks I have gone from 35 (low normal) to 27 (insufficient) and I have no reason to think they won't continue to drop. I know vitamin D deficiency in pregnancy is a big deal (higher pre-eclampsia risk, higher c/s rates, poor development, etc.), but I also know you can't supplement beyond a certain amount and I have to listen to my doctor.

Both of these things have my PGAL brain stressed out, though. Anyone else dealt with this?

MsAmandaPants · January 2014

HoldingOutHope said:

::lurking:: When my Hashi's was still considered "pre," I went back and forth between hypo and hyper. It sounds like you might be on those beginning stages. Is your endo checking your free T4 and T3, reverse T3 and antibodies in addition to TSH? They should really be looking at the big picture. My docs just realized I have tons of free T4 (synthroid is T4) but barely any free T3. My body isn't converting T4 to the active form (T3). I'm now being switched to Armour which contains T3 as well as T4. That said, most endos don't like natural thyroid hormone and they really don't like switching during pregnancy...so I'm not sure what the options might be for you. How often are they drawing thyroid labs for you? It's very common for people with Hashi's to have insufficient vitamin d as well. I've been on 5000 IUs daily for a long time and I'm still only low normal. During my pregnancies, my OB never told me to decrease my dosage, so I am not sure why they want you to decrease...? Did your RE explain? I wish I had some great advice for you, my dear. I know I will be in the same stressful place as you should I become PGAL again, and I know it's always in the back of my mind. I hope someone here has some better experience and advice. But I wanted to pop in and provide some sympathy and (((hugs)))!

Thank you so much for responding.

They haven't released the full report to me yet, but she did say that my T4 looked good. We are drawing labs monthly.

I've looked into the vitamin D and most research seems to indicate that they don't recommend anything over 1,000 because they don't know risk to fetus, although some research indicates going up to 2,000 might be safe if needed in deficiency.
Here is what ACOG says: https://www.acog.org/Resources_And_Publications/Committee_Opinions/Committee_on_Obstetric_Practice/Vitamin_D_-_Screening_and_Supplementation_During_Pregnancy

Some smaller, newer studies are advocating higher doses, but they are primarily from a handful of docs and have not been embraced by the larger medical community.

So frustrating! Even when I was taking 5000 units and day after taking the mega dose 10,000 unit prescription, the highest it has ever gotten is 44 and it just falls off precipitously after that. I'm reading that levels under 20 start impacting baby's bone development and that deficiency puts you at risk for sever pre-eclampsia. At this rate, I'll be below 20 in another month. I've asked the nurse to follow up with the doctor, but I'm really concerned.

buggirl72 · January 2014

Sneaking over to give you some (((hugs))).

Could you possibly get a UV light to help produce vitamin D on your own?

MsAmandaPants · January 2014

buggirl72 said:

Sneaking over to give you some (((hugs))). Could you possibly get a UV light to help produce vitamin D on your own?

Ha! I may have just been scoping those out on the interwebz.

Thanks for the hugs. ((((hugs))) back.

megrae12 · January 2014

**Lurking**

I have zero advice on this but I wanted to give you some big, squishy ((Hugs)). I hope you get some answers soon, love.

czarmom · January 2014

I am on Armour as well and am set to see my endo on Tuesday for a draw. The last pregnancy I had, my TSH went up from well under to 1 to 1.something by six weeks. That is normal and they adjust your medication accordingly. I don't have any advice on Vitamin D, sorry

Okiewife2011 · January 2014

I didn't know I had any thyroid problems and my TSH levels came in elevated which showed I had slight hypothyroidism. That was with my first OB appointment at 8 weeks. Apparently they put in an order of Synthroid for me, but nobody bothered to tell me they had put in a prescription for me. Fast forward to 33 weeks and I had a day of decreased fetal movement and ended up in triage to check on little man. As they were letting me go back to work and gave me my discharge papers I looked at medications to continue taking. Synthroid was listed. I asked my OB the following week about it and he said I should have been on it from the beginning of my pregnancy!

So far little man has been perfectly happy and healthy and at 35 weeks I have only gained about 16 pounds total for the whole pregnancy with no complications. I wouldn't let a slight level change scare you too much. You are at least on medication to help with your levels. Pregnancy can just make them slightly more wonky, so just being a little off isn't a huge deal. As long as you and your doctor are watching it and trying to stay on top of it you should be ok. FX the TSH levels start to level out for you a little more with less swings soon!

slensic · January 2014

((hugs)) It's totally normal for you TSH numbers to fluctuate in pregnancy which is why they test monthly and then adjust accordingly. I think as long as you you are being monitored and your body is responding to the dosage change you should be fine. My thyroid didn't die until after my first pg with DD. My numbers went over 2 in my first tri and I had extra monitoring but was never given medicine and then they balances out on their own and I have a very healthy, happy and smart DD.

As for the Vitamin D, I am on 2000 units prescribed by my perinatal office. Both my Endo and Ob are aware and are totally fine with it, so I think you should ask questions as to why you had to drop down. I know there are risks but you have to choose what is overall better for you and baby.

((More hugs)) All this stuff is so over whelming and it's such a defeating feeling to think that your body can't take care of you and your baby like it needs too without extra medicine and monitoring.

MsAmandaPants · January 2014

Pink021 said:

My body doesn't absorb vitamin D for whatever reason, so I think my latest numbers still aren't in the range. I was suppose to be on 5000 U daily, but my OB said I could take up to 3000 daily.

Does your OB have you on the Vitamin D or is that through an endocrinologist? Maybe your other dr. will have diff recommendations and can discuss it with your OB so you get the best care?

One of my friends had Vit D deficiency during pregnancy and was put on a very large dose (I'm thinking it was 25 or 50K a week), so I know some Drs allow it.

Thanks! I've known about my Vitamin D issues for years and managed it with my primary care physician. I know it is an issue in pregnancy, so I asked that they monitor me. My RE and the OB both indicated in my appointments that I should not take more than 1000 units, but I have a call in to clarify. I'm not sure which is riskier, a level of supplementation or a dropping level. Good to know that other doctors feel comfortable with the higher level of supplementation.

2MamazInSeattle · January 2014

I've never heard that about vitamin d. You pee out excess. I take 5000mg a day based on my docs directions and my levels are staying liw-normal. My thyroid has stayed steady, but being over 2 for a short while isn't probably a big deal and synthroid fixes things pretty fast when you change doseage.

My two cents: go get a second opinion from an endocrinologist. OBs and even MFMs seem to know a lot less and I trust my Endo implicitly. He makes me have draws every 3 weeks too, its a pain but with nip any changes in the bud.

good luck with it all, you're not that far off but it is stressful managing these micro issues on top of the big ones.

kimmyberly26 · January 2014

Sorry you're going through this. I'm also on synthroid and get checked monthly. I still think you're OK at 2.5 given that they made an adjustment. I'm also on extra vit D. (((Hugs))) Hopefully they can figure it all out.

ball.and.chain · February 2014

I have no clue about either issue but I am sending hugs -- sorry you're stressed about it!

ufsandra85 · February 2014

i have a hypo that has changed a couple times during this pregnancy and they just up my synthroid. My Vit d hovers around 20 even with taking replesta and 4000iui of vit d a day, before it was more like 10. my baby is very healthy!

b_echols · February 2014

I don't have any experience with thyroid meds, but I was diagnosed with low Vitamin D in the past. I just read on the American Pregnancy Association that you can safely take up to 4000 IU of Vitamin D supplementation during pregnancy. When I asked my doctor he thought the prenatal was enough (1,400 IU) but I am not convinced and will probably continue to take an extra 1000 IU at least every other day. At any rate, I'm not sure why your doctor said that - maybe it has something to do with the thyroid condition...but it seems lack of Vit D usually worsens thyroid issues. Have they tested your Vitamin D levels?

MsAmandaPants · February 2014

2MamazInSeattle said:

I've never heard that about vitamin d. You pee out excess. I take 5000mg a day based on my docs directions and my levels are staying liw-normal. My thyroid has stayed steady, but being over 2 for a short while isn't probably a big deal and synthroid fixes things pretty fast when you change doseage. My two cents: go get a second opinion from an endocrinologist. OBs and even MFMs seem to know a lot less and I trust my Endo implicitly. He makes me have draws every 3 weeks too, its a pain but with nip any changes in the bud. good luck with it all, you're not that far off but it is stressful managing these micro issues on top of the big ones.

Vitamin D is fat soluble, not water soluble, so you don't pee out the excess. It accumulates in your body.

I'll circle back to my endo to discuss my thyroid. Thanks!

MsAmandaPants · February 2014

b_echols said:

I don't have any experience with thyroid meds, but I was diagnosed with low Vitamin D in the past. I just read on the American Pregnancy Association that you can safely take up to 4000 IU of Vitamin D supplementation during pregnancy. When I asked my doctor he thought the prenatal was enough (1,400 IU) but I am not convinced and will probably continue to take an extra 1000 IU at least every other day. At any rate, I'm not sure why your doctor said that - maybe it has something to do with the thyroid condition...but it seems lack of Vit D usually worsens thyroid issues. Have they tested your Vitamin D levels?

Thank you! I'm having them monitor my Vitamin D levels every month. It has fallen 8 points in just three weeks, which is why I am concerned.

MsAmandaPants · February 2014

Sorry it took me so long to get back to the replies in this thread! I really appreciate all the thoughtful responses. I'm following up with my doctor and my RE. Thanks again!

MrsG80inTN · February 2014

Lurking to give you lots of hugs. I have hashi's but have never had that many swings that I know of though I've only had diagnosis for 2 years. I'm on 75mcg of generic until I get a BFP again then move back to name brand. I am on 5000 Vitamin D right now and move to 2000 in 2 months as my levels were at 20 even after taking 2000 a day for 2 months.

I think it sounds like you need natural light if your RE won't allow more than 1000... perhaps a beach vacation is in order... if prescribed maybe your FSA can cover? (Wishful thinking?)

Anyone want to make me feel better about thyroid TSH and Vitamin D?

Re: Anyone want to make me feel better about thyroid TSH and Vitamin D?

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