TTC with Hypothyroidism - Page 2

[mariacm]

I changed the thread title so it's clearer and easier to find for new ladies.

Peachesmom - welcome!  Glad to have you.

I too am surprised to find so many others on here with hypothryoidism!  Glad to have you all's support and camraderie! =)

If anyone else has hypo due to hypopituitarism like me, let me know - I'd love to hear more about your experience and compare notes!

Also, have any of you specifically had short LP's that lengthened with an increase in thryoid med dose?  My LP has been 8 days in most cycles since DS was born, including last cycle.  Getting thyroid checked next week, but wondering if you all have been through that.  (could also be in part bc I'm still nursing DS).

Hope there will be lots of BFP's for us soon!

[LessTraveledBy]

Hi, me too.

I think I have been hypo since childhood, although I was diagnosed less than two years ago.

I am on Erfa's Thyroid (just like Armour) and doing great these days. However, after having become pregnant with our dd fast and easily, we have had secondary infertility ever since. Hypo never affected my cycles much, so not sure if it has anything to do with why we have not conceived.

I believe the whole "Armour is not stable enough... different levels of hormones, etc." is more like an urban legend and basically used by some doctors as a reason why you should not take it. They don't know enough about it to be able to use it in treating people, so they are very uncomfortable.

BTW, my specialist believes that people will not do well on T4 only. As in sooner or later they end up with all the diseases that go together with hypo. In her opinion, it is poison.

[mariacm]

[pasting some of my own post from the nursing mamas ttc, so sorry to bore you if you're following both threads! ]

Update:  I went to the endo today for a checkup for my thyroid, and discussed the short LP thing with him.  He said he believes it is not thyroid related, and is purely due to breastfeeding.  He thinks that even though I've been cycling (and ovulating) for a while, my repro hormones are suppressed enough by nursing that the LP is short.  He said he wouldn't worry til I've TTC'd with no success for 4 cycles AFTER weaning.  He expects that after weaning, the LP will lengthen automatically to 12+ days.  I was hoping to get preg in the next couple of cycles and nurse while preg for a few months.  I suspect an OB would say the same thing, I was just hoping for a quick solution/easy fix.

So, I'm kind of disappointed that it can't be simply 'fixed' by adjusting thryoid meds. (Got the test done today anyway, results are yet to come and adjustments may be needed, unrelated to TTC).  DS shows NO signs of being ready to cut back on nursing.  Besides the calories, he just likes to nurse and I like the BF relationship.  I understand that nature built in some lacation-induced infertility for most women for a reason, to focus on the baby you already have.  I just didn't think I'd fit into this category since I've been cycling so long already.  So now I'm trying to wrap my head around the possibility of having to wean DS before being able to conceive.  I'm not willing to try to wean DS until he's 2 years old (Nov).  I just don't think it's fair to him to force him to wean now when he needs it so much and he's still quite young, just so I can get pregnant now.

Maybe my LP will lengthen by itself with no change in nursing (fingers crossed, though that would defy logic at this point!)  We had hoped for about 2 years bw kiddos, but maybe that's not meant to be for us, and our kids will have to be farther apart. 

As for my other hypo 'symptoms' - graying hair, lack of weight loss since 4 wks PP despite so much nursing, feeling tired (which ironically I forgot to mention to the doc- sheesh!)... we'll see what my TSH/T4 test says.  Endo says he'd like to 'max me out' on the levothyroxine - I think in part bc I"m ttc and will need more once preg, and in part for symptom relief.  So I might be in for a dosage adjustment soon... not sure yet.

I asked about also using T3 supplementation and he said he doesn't like to unless really necessary bc doing that means the tests for T4 can't be read well bc the T3 makes it look like T4 is different than it really is.  Not sure I understand that fully, but I was just asking anyway since I read stuff online, not bc I really wanted it for myself right now.

Also discussed Armour with him, he's not into it bc he said not only does the dosage vary from batch to batch, but you're getting more than your body gives itself - ie in addition to T3 and T4, you're getting actual animal thyroid tissue since that's ground to make the grains.  It was interesting to hear his opinion.  I'm comfortable with levothyroxine for myself for now anyway, so again it was just an informational thing for me.

[mariacm]

So how is everyone doing?  Any good news?  Any hopefulness this cycle?!?

AFM: Got my test results, no actual numbers, but they said TSH and T4 were in normal range.  Were gonna leave meds the same.  Then I reminded the RN that the doc said he wanted to max me out on the synthroid, and that I forgot to report that I'm always tired.  She talked to the doc, then told me they are increasing my dose.  So I'm hopeful that maybe I will feel better with the new dose.

I'm in mid-cycle now, will be curious to see how the LP goes this cycle.

Hope you all are well!

[sraplayas]

mariacm, I hope that you see some changes in your LP really soon!

AFM, I have another apt. with the Endo. in two weeks.  Apparently, my #'s are within range, too and she has slowly been decreasing my level of thyroid supp.  However, I still have cold hands/feet and really dry skin at times (maybe allergy related vs. thyroid??).  I am going to ask her to order a few different labs at our next apt.

Still waiting for PPO  or PPAF!....

[marinak1977]

Has anyone tried acupuncture for their thyroid? I'm very curious to learn more.

[mariacm]

Sraplayas - in addition to asking for more tests, I would request that the endo NOT decrease the dosage if you're still feeling symptoms.  *They should not go on labs alone, but symptoms too.*  And since the range for T4 is from 0.7 to 1.8 IIRC, there is a lot of room there to be "normal" - ie you can be at 1.0 or 1.7 and be normal, yet you'd be on very different doses to get 1.0 vs. 1.7.  And my endo wants everyone above 0.9 anyway, despite 0.7 and 0.8 being within normal range.  (I don't know anything about the TSH range since I dont' usually get that tested, since my hypo is secondary.)

The RN at my endo's office said it well when I was first diagnosed: "Normal is a range.  So, I personally feel good at about 1.3, but you might feel good at 1.0 or 1.5, so we need to figure out where you feel good and try to get and keep you there."

I also read something a while back when I was first diag that said that even women who have normal levels, but within the bottom 10% of the normal range, have a higher chance of having children with developmental probs as a result of the lower thyroid levels.  To me, that seems it's safer to err on the side of having higher doses than lower doses while TTC.

AFM: I'm in the 2WW now!  BD timing was ok, so we'll see if the LP is long enough and if we did indeed succeed! 

[sraplayas]

thanks, mariacm!  Those are great suggestions and I will definitely bring them to my Endo's attention.  I can't remember what my Free T-4 levels were last, but I know they were at the low end. 

What do you know about Thyrolar?  I

[sraplayas]

Just checking in here!  How is everyone doing?

I had my apt with the Endo. and my levels are still not optimal (although within the "normal" range).  She switched me to a synthetic thyroid called, Novotirol, which is a combo of T3 and T4.  I've been taking it less than a week so we'll see.  I don't really feel comfortable with the fillers that are in this (cornstarch, for one which DS is allergic to). 

I'll re-test in 3 months and she's added a T3 test to the FT4 and TSH.  I think that will be helpful. 

The other thing is that the actual dosage is the same but b/c it is a different formulation I don't know if I am taking more or less!  Agh. I'd be really interested to hear from anyone familiar with this combo drug. :)

[peaches' mom]

sraplayas - sorry I can't comment on the combo drug. I am wondering, though, why you won't be getting tested for 3 months? I am on levothyroxine but have seen my levels adjust after 6 wks.

FWIW, I wanted to fill you all in on my saga. I had my levels tested in Dec/2010, my TSH was considered within the normal limits at 2.67. I was charting, using OPKs, etc and with perfect timing we did not conceive that cycle. My endo upped my dose and when I was tested 6 wks later (end of Jan/2011) my TSH was .3 (He is suppressing me because I was found to have thyroid cancer back in Nov....). Anyway, we (finally!) conceived this cycle. I feel strongly that it was my TSH all along. It frustrates me because back in May/2010 my TSH was 3 (on routine bloodwork). My PCP knew I was ttc but didn't comment at all as it was considered "normal". After everything I have learned, it seems clear that it is nearly - if not completely - impossible to conceive at that level. All those months of trying & getting my hopes up for nothing. Grrrrr.

I hope this helps someone. Best of luck to you all!

[sraplayas]

Hi peache's mom!  Thanks for sharing. :) 

I am really trying to be patient with this but I definitely feel like my thyroid is still off, or maybe just adjusting to the T3 in my system....

[LessTraveledBy]

If someone has not yet read the "Stop the thyroid madness" website, I highly recommend it. It sounds to me like some of you are not receiving adequate treatment. (E.g., it is not enough to measure TSH and T4free. There are people who, using only those, would never get well, as their bodies don't convert T4 into T3 like it is supposed to. Also, adrenals are closely linked to thyroid issues...) Please do not trust your docs, blindly. Not saying any of you do, but this is the sort of illness where the patient has to become an expert of her own body.

[sraplayas]

LessTraveledBy--Thanks for your comments.  I think it is so important that we are advocates for our own health and see our HPs as part of our wellness team vs. the all-knowing.  I have visited the Stop the Thyroid Madness website and gleaned much from it! 

I've had a crazy up-and-down sort of week (mood & energy wise) and I suspect it may be due to the new T3/T4 combo I'm taking but I'm not sure if it's too soon to feel any effects.  Today was much better, thank goodness. :)...

 

Originally Posted by LessTraveledBy 

If someone has not yet read the "Stop the thyroid madness" website, I highly recommend it. It sounds to me like some of you are not receiving adequate treatment. (E.g., it is not enough to measure TSH and T4free. There are people who, using only those, would never get well, as their bodies don't convert T4 into T3 like it is supposed to. Also, adrenals are closely linked to thyroid issues...) Please do not trust your docs, blindly. Not saying any of you do, but this is the sort of illness where the patient has to become an expert of her own body.

[Anastasiya]

I was dx with Grave's disease over twenty years ago, and as a result had radioactive iodine therapy, which left me w/no functioning thyroid. I was on Synthroid for over a decade, never feeling quite "myself", and only when a new endo finally switched me over to Armour did I remember what good actually felt like!

I have had lots of ups and downs, though, I suppose from many pregnancies and postpartum periods, and when Armour was reformulated and wasn't working like it used to.

Never had any problems conceiving, though, even with my latest child who was conceived in spite of my TSH being in the mid 30s. (I neglected going to the endo for over two years - stupid, stupid me). That pregnancy was uneventful, thank God.

After trying Westhroid, Naturethroid and desiccated thyroid, I went back to Armour (180 mg) since it's more available to me here, but I crush the tablets completely before taking them since they have reformulated the meds with more cellulose and it's apparently harder for the body to break it down. (From the Thyroid Madness site). Just an FYI.

[LessTraveledBy]

Anastasiya... Are you not able to get Erfa's Thyroid? I used to take Armour, before and after the change, and now take Thyroid. It has given me my life back.

[mariacm]

It's been awhile!  I hope some of you have had BFP's since this thread went dormant last month! =)  

I'm back here in TTC after my miscarriage a month ago at 8 weeks.  I had started a new dose of levothyroxine 1 day before conceiving in January.  I've been on the same dose since, but now the endo wants me to go get a new free T4 check this week.  So we'll see what happens.  We're hoping and praying we'll conceive again sometime soon.

How's everyone else doing??

[Laurucha]

I wonder if you guys could give me some insight...

I became concerned a while back about hypothyroidism when I started charting and discovered my BBT is very low. I also have many of the major hypothyroidism symptoms listed, especially a lack of energy. I asked my doctor to test my thyroid function, and my TSH was a 2, so the doctors are telling me that my thyroid is fine. I am now seeing an acupuncturist, who thinks there is a very strong possibility that I have hypothyroidism. As I understand it, a person can suffer from hypothyroidism and have normal TSH levels. Did anyone have trouble convincing their doctors to test their thyroid?

[mariacm]

Laurucha - I didn't have a problem with my doc testing, but just wanted to say that you can go to an endocrinologist and request more testing.  (Your symptoms certainly do sound like possible hypo.)  If your insurance doesn't require referrals for specialists, just look for a good endo in your area.  If your insurance does require referrals, try to get one from your doc.  You could say you wanted to make sure all your hormones are ok since your TTC and that's why you want the endo, if s/he doesn't want to refer you for the thyroid that they think is ok.

Good luck!  I hope you find some answers soon. =)

[Laurucha]

Thanks for the response, Maria. I have an HMO so I have limited choices and would need my primary care physician to give me a referral. I did see a reproductive endocrinologist, who is, of course, an endocrinologist, but she just said that my TSH was fine so there was no problem. I made an appointment with my doctor. Maybe I can convince him that being tired all the time is not normal and that he should order some more tests.