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


icelandgirl

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icelandgirl Proficient

I have my test results...anyone want to play Dr with them?  

 

Everything is back except for the antibodies.  Just a note...my cholesterol which was a high a month ago is now beautiful(LDL went from 115 to 80)?  The only change was upping my thyroid medicine from 100-112 mcg.  I believe there may be a link here.  So, here are the results...my first time getting anything but TSH and FT4 tested(a month ago they were 4.62 and 1.22).  Let me know what you all think.

 

 

Name                                          Value   Reference Range

TSH                                              1.300    0.450-4.500 uIU/mL         

T4,Free(Direct)                            1.38      0.82-1.77 ng/dL

Triiodothyronine,Free,Serum         2.2      2.0-4.4 pg/mL

Reverse T3, Serum                       24.7     9.2-24.1 ng/dL

Triiodothyronine (T3)                     85       71-180 ng/dL

 

 

 

*Edited to fix the crazy way data pasted.

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nvsmom Community Regular

I'm not great with interpreting some of those, but I'll play.  ;)

 

Your TSH and FT4 look okay.  TSH is nice and low (in some lower would be better yet in others, higher would be better) and your FT4 is just above the 50% range of your lab's range - okay but barely okay if you go by the assumption that the 50-75% range is a good place to be.

 

Your FT3 is not in a good spot (for me).  I was quite hypo still when my FT3 was that low. You are at about 8% of your lab's normal range. Ideally (from what I have learned for myself) you would want that FT3 above a 3.2.... 2.2 is low.  

 

The problem with low FT3 is that it is the active hormone, that is the hormone that your body would use. Supposedly our body's organs can convert T4 to all the T3 it needs but in practice it doesn't seem to work that way.  Even your T3 is "lowish".

 

I do not have much experience with RT3 except to know that a high number is not helpful.  The RT3 occurs when the wrong iodine is removed from a T4 (4 iodines) so instead of making a useable T3, it makes RT3.  RT3 should be present in the body but it should be the minority - there should be more T3. That creates a problem because RT3 is thought to bind to the same receptors that accept T3 so you body isn't getting the hormones it needs, which results in hypothyroidism.... I believe.  You'll want to look this stuff up as I am far from being an expert. ;)

 

I think to get a good idea if the RT3 is too high compared to T3 or FT3 you need to look at the ratios.  This site explains it a bit: Open Original Shared Link  as does this one (although it is by a chiroprator which is just...wierd) Open Original Shared Link

 

Have you thought about adding some T3 to your meds?  That would be Cytomel (I think) or even trying a natural desiccated thyroid like Armor.  It might bring up your T3 and FT3.  

 

I hope you get more info on it all.  :)

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icelandgirl Proficient

Thanks Nicole! I got a call from the Dr's office saying that all my numbers were in normal range except RT3. And just follow up as planned. No follow up was discussed so I'm like...ummm k?

So I asked the lady if the Dr would consider adding T3 as my hypo symptoms were still there Andy FT3 was at the bottom of normal. She said she'd check. Most likely I'll get a call saying to come in and talk about it and it takes at least 4 weeks to see him. Ah well.

I do see a difference from a month ago getting it down some...I'm less tired than I was and I'm thinking the lower cholesterol is because of getting the thyroid working better. We'll see what the Dr says. Wish me luck!

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nvsmom Community Regular

I'm really glad that you are seeing a difference already.  :)  Most people do just fine on the Synthroid; it seems to be the minority that need tweaking with T3.

 

Good luck with the doctor. In the meantime, google RT3 and T3. I liked (some of the) information on Stop The Thyroid Madness. There are a lot of other good sites out there who give more info on RT3.

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icelandgirl Proficient

It's amazing how just a little tweak in medicine can help. I was so exhausted before...now I'm just tired. But it's an improvement. And the Dr was reluctant to up my mess last time because I was just above normal at 4.62. I was like you have to do something. Lol!

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nvsmom Community Regular

LOL I hear you!

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  • 3 weeks later...
icelandgirl Proficient

Hi again...finally got some antibody results. After 2 weeks of not getting results I finally called and it seems my blood was lost or results were lost. So I had to go back in and get redrawn. My TPOAb came in at 62 with a range of 0-34. Still waiting on the other one. Does this mean I have Hashis? This was taken after 6 weeks on a higher dose of my medication and I've felt less tired so I'm assuming it may have been higher.

I have an appointment on Friday to follow up on my thyroid ultrasound because it apparently came back abnormal too. What do I need to ask? Would love thoughts from anyone on here with Hashis...Thanks all!!

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Gemini Experienced

Hi again...finally got some antibody results. After 2 weeks of not getting results I finally called and it seems my blood was lost or results were lost. So I had to go back in and get redrawn. My TPOAb came in at 62 with a range of 0-34. Still waiting on the other one. Does this mean I have Hashis? This was taken after 6 weeks on a higher dose of my medication and I've felt less tired so I'm assuming it may have been higher.

I have an appointment on Friday to follow up on my thyroid ultrasound because it apparently came back abnormal too. What do I need to ask? Would love thoughts from anyone on here with Hashis...Thanks all!!

I am heading out to do errands this afternoon but will post later on in early evening. This is all good........you are getting results that will help to figure it all out. But yes, in a nutshell, your antibodies are elevated for Hashi's.

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icelandgirl Proficient

Thanks Gemini...had my appointment. I apparently have a small nodule on the left side of my thyroid that they'd like to monitor for the next couple of years. That was it.

Next Friday I see the endo. I want to make sure I ask the right questions. My lowish FT3...High reverse T3...The antibodies. What are the right questions? How do I get my thyroid in good working order? Any thoughts would be greatly appreciated.

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GF Lover Rising Star

Just wanted to tell you not to worry about the nodule.  They are usually calcified and of no concern.  I have an ultra-sound on my every 6 months.  You'll need to start on some thyroid medication of get back to normal levels.  

 

I'm sure Gem will add lots more.

 

Colleen

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icelandgirl Proficient

Thanks Colleen...I've actually been on thyroid meds for 14 years. My new Dr wanted to do the ultrasound and I asked for the full panel including antibodies after seeing my allergist. So...These levels are on medication. Just wondering if this has been contributing to my not feeling well over the past few months.

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GF Lover Rising Star

Most definitely YES.  I can tell if my level changes by a single point.  It's so important to keep it steady.

 

Colleen

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icelandgirl Proficient

Interesting this whole thing ya know? How all of this has to work together or you feel bad.

Any thoughts on what to ask the endo? It's my first time seeing one ever.

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GF Lover Rising Star

Basically you want regular blood tests to monitor the thyroid to create a range of results and to see if it rises or falls and you can tell physically.  The normal range is quite big but many of us do better at a specific number.  It does take tweeking to get to the right place and can be frustrating but is worth it.  Make sure the Doc explains everything and make him/her to slow down to make sure you get everything.  Make sure the Nodule is a calcified nodule.  If its not she should do a Fine Needle Biopsy to check it out.  Other wise they just monitor them and in many cases the main nodules starts having babies and you get more...lol.  Still nothing to worry about unless they start to interfere with your throat.  

 

That's all I can think of right now.

 

Colleen

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cyclinglady Grand Master

I will chime in here (beats sending out Girl Scout permissions slips) and add that I would not worry about the nodule. I have had the same one for 20 years. No changes in size. I have been on Armour Thyroid that long and the dosage has varied over the years as my thyroid continues to malfunction.

Since going through menopause and going gluten free, it has stabilized. I was having wild swings (hyper and hypo) for two years just prior to my diagnosis and six months into my dx. My antibodies have always been sky high (over 2,000) and going gluten-free has not lowered them much.

Like Colleen, I can tell when I am off and I need a med adjustment.

We just changed insurance plans, so i will have a new doctor. During my first visit, I will present him with a written medical history. Doctors love that! Our family medical tree chart was a big hit with my neice's Ped GI too. Much easier to read than their forms.

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GF Lover Rising Star

Ah...yes, as Cycling said.  The Doc will want to know everyone in your family with a thyroid problem.  If you don't know,  find out before you go to the appt.

 

Colleen

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icelandgirl Proficient

A lot of women in my family have thyroid problems...my mom, grandma, aunts, cousins...but no one with Hashis. Or maybe never tested for it. My mom never has been. But like I said I've been hypo for 14 years and this is the first time anyone has checked my antibodies.

Do you do anything lifestyle wise for the Hashis? Food, exercise, supplements. I'm thinking getting all of this autoimmune stuff settled down would be good.

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Gemini Experienced

Your antibody levels could very well have been higher but may have come down a bit with the increased dosage. I don't think you are there yet, though. The endo may not make a big deal out of the elevated antibody level because it isn't that high but it is important. You should be able to lower it into normal, over time.

If you don't mind me asking, what is the dosage you are taking? You should definitely go by symptoms, as well as blood levels, for dosing.

Some docs have trouble doing this but you can't be walking around symptomatic just because your blood work looks good. As nvsmom has said, you will probably feel best with your T3/T4 levels (free) in the mid to upper ranges and your TSH anywhere from 1 to 2.

If your T3 doesn't come up to where it should on T4 only, you might want to consider taking a T3/T4 combo. This can also have the benefit of driving down your TSH because you will be getting all you need from the thyroid hormone you take.

The reverse T3 I am still learning about and it can be confusing. Mine is low so I never paid much attention to that. But from the little reading I have done is that it will facilitate ridding the body of excess T3. I need to do some more reading on that but I would be interested in hearing

what the endo says about it. My doc has always just said that you want that to be on the low side and mine always was so not much attention was paid to it. I was more interested in working on my antibody levels, which peaked at 1200. Took me about 8 years but it is now in normal range. High normal but normal, dammit! You will find that's once you get the T3 up, you'll feel even better...that is the active hormone.

I'll see if I can find a good explanation of RT3 to send you. I would also suggest, at first, having your levels checked every 3-4 months to see if they are stabilizing or changing because they can jump around a bit sometimes. But you are right.....just a smidge of difference in the dose and it can make a big difference.

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icelandgirl Proficient

Hi Gemini...I'm on 112mcg of levothyroxine since mid July. Before that I was on 100. In 4 weeks my TSH went from 4.62 to 1.3. My cholesterol also improved a lot. LDL went from 115 to 80. But my Dr thinks it's not related. Lol.

The PA I saw yesterday had never heard of reverse T3. Oh well. From what I've read I think when T4 isn't converting to T3 correctly that that becomes reverse T3? Something like that. My free T3 is on the low side. ..2.1 or 2.2 and the reverse is high so something isn't right.

Do you know of anything besides the medication that can help with the autoimmune portion of this? I do wonder if this is why I still don't feel great despite being gluten free 7 months...there's been more going on than celiac.

I do plan to ask the endo about adding T3...about the antibodies...The reverse T3...about testing more frequently. What else?

Thanks Gem!

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GF Lover Rising Star

When 1 AI Disease is flaring, others like to join the party.  That's why people with multiple AI's have difficulty recovering.  It's really difficult to get them all settled down at one time.  It takes lots of work to keep on top of multiple AI's and lots of patience.   I think it's very important to pay very close attention to what type of symptoms you are having.  After awhile, you may be able to tell which AI is the main culprit.  Although many symptoms overlap, you will learn to read your body and know what is off.  Keeping all AI's stable is KEY.  

 

Colleen

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icelandgirl Proficient

I hear you Colleen. How do I keep them stable? I really want to. I'm gluten free...taking my thyroid meds...what else can help? I asked the PA yesterday and she just shrugged. Researching I've seen some evidence that selenium may help the thyroid work better. But I'd love other ideas.

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GF Lover Rising Star

I can only tell you what I do.  If I feel a cold, sore throat...that sort of thing, I really rest, drink tons of water and take Ibuprofen.  If I feel run down...the same.  If I can tell something is off with thyroid....I get the blood test even if its earlier than the regular scheduled one.  I limit caffeine and sugar, eat a lot of fruits.  Limit beef but eat chicken all I want.  I don't eat out often because a gluten hit really sets everything off.  

 

Some cues I use to keep tabs on things (these are cues are ones that work for me) yours may be different.

 

Hair texture change, fatigue (thyroid)

cold sores (autoimmune system is activated)

sore throat (getting run down and need to rest)

stress (effects my bowels, and can get me run down)

headache (can be from gluten or most likely eye inflammation, I have Sicca Syndrome)

dryness (Sicca, or thyroid, will take appropriate measures)

 

With Autoimmune Issues, Inflammation is the basic culprit.  At first sign of this I do my best to calm it down as quick as I can.  Keep in mind that any AI can set off the other(s).  

 

There really isn't anything else you can do for your Thyroid.  Some people may use certain suppliments or claim something "fixed" it but that just doesn't happen.  I really does take a long time to feel good for any length of time when battling multiple conditions.  I am not very active, for other reasons, but exercise is always beneficial.  

 

I know all of this isn't really helpful but there just is no magic answer or pill.  Maybe Gem or others might have some more tips.  I know it's hard to deal with all this but just take it day by day....

 

Colleen

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icelandgirl Proficient

Thanks so much for all the good thoughts and tips Colleen.

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GF Lover Rising Star

Your Welcome Hun...hang in there.

 

Colleen

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Gemini Experienced

Colleen is such a wealth of good information!  She is correct....having multiples is harder and I went through some trying times early on trying to get everything balanced.  It's that time thing again.  Eating well, paying attention to the thyroid problem right now, and exercise when you feel better is important.  I would say I entered a higher level of feeling better once I started going to the gym.  That didn't happen until year 5 of recovery because my thyroid went wonky a couple of times due to overdosing on supplements because I was healing and absorbing better.  THAT was a b%$@#. 

 

You have done well with upping your thyroid dose incrementally to get better results.  I would assume you are feeling better after having your TSH drop to what looks like a good number.  Ask a lot of questions at the Endo but I found that my Free T3 did not come up until I started taking a T3/T4 combo.  I just do better on one, compared to a T4 only.

Above all, do not let the bastards get you down and believe that you will feel better down the road....because it will happen for you.  There is a lot to learn with Celiac and Hashi's and as time goes on and you learn more on how to manage these well, it gets better.  I still have some fatigue, especially when I am stressed...like right now, BUT I manage it better.  How?  I am crazy and just won't give in. I found that even lighter exercise in the gym helps tremendously and I always feel better leaving than when I arrived.

If you feel OK, try some walking during the day just to get out in the sunshine and fresh air.  Eat.  Make sure you are eating good food, often.  That is where your energy comes from....along with your thyroid. Once you get the thyroid in a better place, that makes a big difference.  Plus, healing may very well slow down if your thyroid is low....it controls your metabolism, which is everything.  Concentrate on that for now.  You have already made some good improvements and yes, cholesterol will be affected by thyroid numbers.

Those silly medical people have no clue..... ;)

 

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