Hormones, Hashi's And Celiac- How Does This All Work Together?

[icelandgirl]

Thanks Gemini...This is the best place to come for kindness and wisdom in dealing with these issues.

[nvsmom]

I'm not as far into treating my thyroid as the other ladies, but I found it took about a year of treating my thyroid before I finally got the right dosage and the right medication. I remember being so incredibly impatient while upping my dose so so soooo slowly. It drove me nuts. And then I had a doctor who told me "his scientific mind" would not allow me to try natural desiccated thyroid or T3.  Maddening.

 

Treating the thyroid is a frustrating thing, but hang in there.  You'll get to a good spot eventually. Just make sure you go by those free T numbers and how you feel. Especially how you feel. Labs don't tell it all: according to my labs I don't even have Hashi's because my TPO Ab was only 33.8. My thyroid just spontaneously decided to stop working.  LOL

[icelandgirl]

Thanks Nicole...my first endo appointment ever is tomorrow. What do I ask? Obviously I want to talk about my free t3 being on the low side and reverse t3 being high. But what else? I have major Dr anxiety and have to sit in the waiting room doing deep breathing. A lot of times by the time I see the Dr I'm just ready to go and forget anything I want to say. Lol...but seriously...it's true.

Would love your expertise in this area. Thanks!

[beth01]

Write your concerns or questions down!!!  Damn frain bogs.  I have to before every doctors appointment or I run into a bad case of CRS.  My boyfriend and I usually discuss concerns the night before I go since he seems to be able to function on a much higher scale than my brain does right now.  Good luck and I hope you are feeling better.  Hugs

[icelandgirl]

Lol Beth! I get so frazzled that I've written down questions and still don't ask. Sigh. What's good to ask? I seriously am in an almost meditative state by the time they call me in from all the deep breathing.

[beth01]

I can't help you with the Hashi's, I am at the other end with Grave's.  Mine was easy, they nuked my thyroid and put me on replacements.

 

I always write a list and then forget the list lol. Started to put it on my seat in the car the night before so I at least remember to take it with me, putting it in my pocket is another thing.  The brain fog is the one thing killing me right now.  I feel like such a dunce all the time and I think I  need a bib and a helmet.  Next thing you know, I'll be licking windows.

[icelandgirl]

Please don't lick the windows :-)

I'm sorry that you are still having brain fog...that's rough. Any ideas on why? I don't have that anymore. And my bloating and D have definitely reduced since cutting out carrageenan...it was in my almond and coconut milks and really hard on my system. My Vitamin D is within the normal range now...30.7. So...maybe that's a good sign.

[nvsmom]

I have some doctor anxiety too.  For major appointments I make two lists - one for me to read and one for them to read - so we can go through it together.  Put the most important things at the top because it seems doctors will only process one or two items per visit.  LOL

 

I would calculate what you want your FT3, RT3, FT4 and TSH to be.  Figure out what you want and tell your doctor you would like to get to there.  I used to make a chart for each item, with a highlighted ideal range, including what meds and dosage I was at for each visit.  It helped me see trends and know if the lab results I was getting were getting into the acceptable range.

 

I just noticed that I'm probably too late.... I hope the appointment went well!  Let us know how it went.  

[icelandgirl]

Not too late. My appointment is at 5. Already working on my breathing. Thanks Nicole.!

[icelandgirl]

Hey all...just a little update. I love my endo. He's great! He had thyroid cancer and his wife has Graves...He really gets how the thyroid works and how it affects you! He treats based on symptoms, not numbers. He suggested adding T3 before I had a chance to ask. Crazy! So...I'm adding T3 and re checking blood work in 6 weeks, following up with him in 7. Hopeful that this helps. :-)

[nvsmom]

Good luck!  I hope it makes a huge difference for you.  

[Gemini]

You hit the jackpot with that one, Icelandgirl!!!!!! Sounds like a keeper!

[icelandgirl]

Thanks so much Nicole and Gemini...it's a good feeling. I've had 2 great Dr's appointments this year...One with my allergist who encouraged me to get tested for Hashis and the second yesterday with the endo. I'm definitely encouraged.

Interestingly,my pharmacy doesn't stock the T3...they have to order it and I won't have it until Monday or Tuesday.

Thank you both for sharing your experiences, wisdom and advice with me...it has helped so much!

[GF Lover]

Hey Ice Girl.

 

Put that prescription on automatic refell if they offer that.  Then they will know to order it before you need it.

 

Great news about the Doc.

 

Colleenj

[icelandgirl]

I'm bummed.  I had really high hopes for the T3...unfortunately my body doesn't tolerate medications very well.  I took this for 3 days, had severe tightening of the chest and D.  My Dr and I agreed that I needed to go off of it.  So, I'm just on T4 now.  And have 177 T3 pills that I paid $75 for that I'm stuck with.  Bummer.  I was disappointed...I had let my hopes get up about the T3.  I told my husband that I'd rather be tired on T4 only than feel like I'm having a heart attack and having D on the T3.

 

Would love to figure out something else to help...that's not a medication.  My body just has such a hard time with meds.  I started taking selenium at the suggestion of my endo.  Repeating bloodwork in 5 weeks now.  If anyone has had anything else help their thyroid, let me know.  Thanks  

[cyclinglady]

Sometimes just taking the normal amount of any drug can cause side effects. Knowing my own issues with meds, my doctor starts off small and increases the dosage. He will even have me take it every couple of days in small doses in order for my body to adjust. In a week or so, I can take the drug daily.

This does not necessarily pertain to you, but splitting the dosage can help too.

[icelandgirl]

I hear you. He started me on the lowest dose 5 mcg. On the 2nd day I cut one in half and just took that but still didn't do well. My gut is still recovering but at least the chest part is done. It made me scared.

[nvsmom]

That's too bad it didn't work out.  

 

I too had D when I started the Thyroid. It lasted on and off for a couple of months and then normalized itself... It was a switch after a lifetime of C.  LOL It didn't start immediately though - it took a while to get going and then eventually it slowly stopped. I also had a bout of serious hairloss when I switched; I wasn't impressed with that.

 

... Oh hey, how about trying Armour?  Maybe it was the T3 pill you were taking?  I know that is a long shot but it could be something to bring up with the doctor.

[cyclinglady]

That's too bad it didn't work out.  

 

I too had D when I started the Thyroid. It lasted on and off for a couple of months and then normalized itself... It was a switch after a lifetime of C.  LOL It didn't start immediately though - it took a while to get going and then eventually it slowly stopped. I also had a bout of serious hairloss when I switched; I wasn't impressed with that.

 

... Oh hey, how about trying Armour?  Maybe it was the T3 pill you were taking?  I know that is a long shot but it could be something to bring up with the doctor.

I have been on Armour for 20 years and refused to switch. Everyone is different, so it may be worth a try!

[icelandgirl]

That's too bad it didn't work out.  

 

I too had D when I started the Thyroid. It lasted on and off for a couple of months and then normalized itself... It was a switch after a lifetime of C.  LOL It didn't start immediately though - it took a while to get going and then eventually it slowly stopped. I also had a bout of serious hairloss when I switched; I wasn't impressed with that.

 

... Oh hey, how about trying Armour?  Maybe it was the T3 pill you were taking?  I know that is a long shot but it could be something to bring up with the doctor.

Thanks Nicole...I was sad.  I had such hopes for it.  The endo called me at home and we talked about it.  D was one of my big issues with celiac so having something make me have D is not good.  The chest tightness was really scary for me too.  He mentioned Armour...he said he's not a fan, but would prescribe it.  I'm scared to try anything new at this point.  My body is so sensitive to medications.  He was also a little hesitant about Armour because it has T3 and I had a bad reaction to T3.  So, at this point we're leaving things as is until I see him in a few weeks.  Let me calm down from the fear of what happened and then decide what to do from there.  

 

There is a a lot of hypothyroidism in my family...grandma, mom, aunts, cousins, but no one has been tested for Hashi's until now.  And this week my aunt was having issues and they ran tests on her and sure enough she has Hashi's too.

 

Crazy.

[africanqueen99]

It was so easy to just nuke the thyroid, a day of tests and two drinks and I was done.  Three days of being extra careful not to be around pregnant women and kids ( try telling that to your nine month old ) and flushing the toilet 70 gagillion times after using it so you aren't radiating everyone.

Wow, I wouldn't call the process "easy."  As a new-ish mother with cancer I had to wean my daughter (13 months, at the time), purposefully ingest poison in a room full of radioactive signs, move my family out of my house and be in isolation for ten days.  In those ten days my husband came by toward the end and one friend stopped in with lunch (wasn't allowed even in the front door).  It was a very lonely experience, but the hardest part was weaning and knowing I'd never have the option again with that daughter.  Not to mention the LID (low iodine diet) the full month before - that was an incredibly restrictive diet.

 

Maybe they do it differently for people with Graves, but I'd say it's on the spectrum of being a big deal.

 

OP - I hope you get to the bottom of your prescription needs.  The first time I was RX Synthroid I had diarrhea for a week straight until I stopped taking it and went on Levoxyl.  Then they stopped making Levoxyl a while back and I was back on Synthroid with no problems.  It's funny how the body changes, in that regard.  Hopefully things will sort out for you.

[africanqueen99]

I forgot to mention this earlier - does your physician offer a month of free samples?  Maybe you can get some Armour that way and try it out.  My endo won't prescribe it.  He's a big wig with the academy and only does Synthroid and Levoxyl.  Period.  No generics, nothing on the "unusual" end of the line.  Totally old school.

[nvsmom]

I'm glad that the doctor hasn't closed the door on T3 completely.  Maybe in a few months it could help.  I'll keep my fingers crossed for! 

[beth01]

Africanqueen99, I am sorry you had to have your thyroid irradiated for cancer, it was quite a bit different for me having Grave's. Out of all the things I have been through on my treck with celiac, this one was actually really easy. I didn't have to be quarantined, I could be around my child, she couldn't sit on my lap for long periods, I had to eat off of throw away plates and utensils and like I said, flush the toilet three times after using the bathroom. I was allowed my everyday life. I didn't need to be on a restrictive diet before hand. I was diagnosed with Grave's disease and had my radioactive iodine within a few days. My milk supply dried up for no reason at 4-5 months ( Grave's was the culprit) so I didn't need to quit breastfeeding. For me it was easy.

[karoyse]

Hi, Just have been reading al the info on this post and this is the first time I have ever posted anything .  I have been having alot of the same problems you have been posting about and my Dr. kept telling my thyroid levels were fine. I felt awful so finally she sent me to a endo Dr. It was like I finally found someone who understood..He said she read the test wrong and she should have raised my synthyriod to 175 mcg in stead she lowered it the last two years. I am so  mad at her for letting me feel like this. He took the time to explain everything to me. I really hope things get better soon.

What i wanted to ask is have any of you had problems taking the generic synthyroid?  It doesn't work for me and i have been taking brand name for 28 years.

Thanks for all the info. It is nice to know there are other who understand all the problems Celiac Thyroid and menopause cand cause. Though I wouldn't wish this on my worst enemy.

Kim