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16 replies to this topic

#1 nvsmom

 
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Posted 28 September 2012 - 08:34 AM

I found out I've been living as an undiagnosed celiac my entire life just this past summer. On the advice of you helpful people of this forum, I asked for vitamin level tests and a TSH because my energy can get quite low and my hair loss keeps advancing. From those tests, I found my vitamin levels are great but my TSH was high; I followed that up with a T4 and TPOAb and found I have Hashimoto's (probably have for a good 15 years). This freaked me out a bit since I also had ITP as a teen. That's three AI diseases!

This past month I started feeling flu-like, like I'm starting to get the flu but it doesn't come. That happens to me a few times a year. I was starting to think I was a hypochondriac. The usual problems popped up: a migraine that lasted a week, more aches and pains but this time it was back into my hands and elbows (last time was shoulders), mildly feverish (hit 98F, which is high for me LOL), and got sores in my mouth and top of throat, and my hair (which was starting to grow back in on this gluten-free diet) starting falling out a LOT...even my husband noticed and my husband isn't the most observant when it comes to stuff like that. LOL I know I've only been gluten-free for 3 months, and my thyroid is still undertreated, but it felt like another AI disease to me.

I went through my old medical records, which I bought from my old doctor when she closed her practice, and checked out my labs for abnormalities. I found high, and high normal TSH tests from 15 years ago, and two Anti-nuclear Antibody (ANA) positive titres of 1:160 (speckled - can indicate Lupus, RA, hashi's, Mctd) from when I got ITP and my first arthritic flare up (20 and 15 years ago), and a positive Coombs 1+ test (can indicate hemolytic anemia). I also found a hospital narrative saying my ENA test was pending but never another word or lab on it.

I went through dr Google and read a few books and found my symptoms really fit UCTD or Lupus.

I went back to my doctor, told him about my arthritic like symptoms (I'm not that worried it's RA) and had a few more tests:

ANA - negative at 1:80
C4 - 0.16 (ref 0.1-0.4)
C3 - 0.96 (ref 0.5-1.5 I think... it was mid range)
ESR) sed rate - 0.5 (ref 0-20)
ENA - pending

These tests tell me almost nothing. ANA is borderline positive depending on the lab, but I've already had two positive ANAs so this doesn't matter except I was surprised that it was a tad lower than my last one.

C4 is at the lower side of normal but is still normal. Those experiencing inflamation would have a low C4; I was expecting a low C4.

C3 is good. If it was low it could indicate a kidney problem and I've had no sign of that.

ESR is normal and low, but from what I've heard, it doesn't indicate much. If it was high, that would show inflammation but being low doesn't mean there is none.

I WISH that ENA had been ready. And my (grrr) doctor is sitting me telling me that all of my tests are normal but he'll refer me to a rheumatologist for my past arthritic pains... The tests weren't all in! When I asked him for a copy, he tried hard to put me off, and I can only guess it's because he didn't want me to see that the ENA wasn't there. Ugh. Sigh.

I have to go back and get my thyroid levels rechecked in 2 weeks so hopefully I can see the ENA then (since it will probably take months to get into a rheumy).

Speaking of my Hashi's. My doctor is treating me so conservatively that I feel like I'll be lucky if we get me feeling good by spring. He has had me on 50 mcg of synthroid for month. The ONLY improvement I've had is with C. It is much easier to go to the bathroom but (TMI...) it almost seems to burn on the way out now (sorry sorry tmi) so it's difficult to see it as an improvement. Still am tired, cold, have dry flaky skin, still have mild headaches most mornings... I dunno.

This has mostly been a complaint session for me. It's nice to get it off my chest. I hate to bring it up with my husband because I don't want to worry him too much, and I've already complained to him. LOL I don't want to worry my mom. And most people, even if they are good friends don't want to hear it or don't understand... I'm trying not to turn into one of "those" people who complain all the time.

I want to know what is wrong. I've ignored my symptoms for decades after being told it's nothing by doctors. I want to get healthy before something major happens again. I know I need to be patient while waiting for specialists, test results, and medication to kick in but it's hard when you know you could be feeling better.

And I am cutting other foods out now too in case that is part of it. I know I have an issue with milk but have been eating cheese, and the occasional yogurt or ice cream. I am cutting that out this week. I have also stopped eating potatoes, yams, and tomatoes (nightshades) but I don't think that's it.

Thanks.
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#2 rosetapper23

 
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Posted 28 September 2012 - 08:50 AM

The symptoms you describe (except the mouth sores) can occur while your thyroid is adjusting. I agree with you that your medication is very low for the symptoms you're having. Joint pain, hairloss, fatigue, etc., can occur if the thyroid levels are high OR low, and, as you know with Hashimoto's, the thyroid levels can go both ways for a while. When I was going through this period (took a good 18-24 months), I was taking Armour Thyroid, and even though my doctor was angry at me for doing this, I added 1/4 tablet when my symptoms worsened. Doctors get upset when patients "self-medicate," but the Armour Thyroid site says that adding 1/4 tablet is NOT dangerous. Once I settled on a dose that seemed to work, I let my doctor know what my prescription needed to be for the future--she promptly fired me as a patient for "self-medicating." I sent her a letter about letting her patients suffer because she did not fully understand how to treat patients with Hashimoto's and did not grasp how to treat a patient with Armour Thyroid (a medication she had absolutely NO experience with--the prescription had come from my previous doctor). So, anyway, I then shopped around for a doctor that had experience with Armour Thyroid and interviewed him first about his philosophy with regard to letting a patient self-adjust the dosage when the thyroid levels go up or down. That worked fine, but it's hard to find such doctors.

As you can see, treating Hashimoto's can be tricky....and it's even trickier with synthetic hormones. It is far more dangerous to adjust the dosage of your particular medication, because tests won't indicate a problem for several weeks. Thyroid levels with Armour Thyroid can be tested sooner. It's up to you what you want to do, but you may have to have a talk with your doctor...or change doctors once again. It is sad that doctors seem to have no idea how awful life can be with a thyroid that's out of whack--it truly is torturous.
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#3 Gemini

 
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Posted 28 September 2012 - 09:26 AM

All of the symptoms you are having can be caused by an under treated thyroid problem. I have Hashi's also and have been doing this for 20 years so know the drill pretty well. What you need to do is find a doctor who will give you a T3 thyroid hormone like Armour or Nature-throid because with Hashi's, you really need T3. Forget about using the TSH test for dosing because that just does not work. You need to go by your T3 and T4 numbers....free T3 and T4. The one and only time I have had joint pain in my life was from my thyroid dose being too low. That will also cause hair loss...in a big way.

Don't get too wound up about the ANA test....it's just a general test that says you have inflammation in your body...it's non-specific. You can have elevated ANA from Hashi's and Celiac alone so it might not mean another pending AI disease. My ANA has NEVER been in the normal range but like yourself, I have multiple AI diseases.
4 of them, in fact. I have done very well with the gluten free diet, plus keeping the dairy light as I can't eat a lot of dairy. Do not cut out too many things from your diet, especially nightshades, because I am willing to bet that your under treated thyroid is the source of all your problems. It can cause flu-like symptoms also...you'll feel like horse pucky! I know many folks think nightshades are really bad but they also are veggies with nutrients and, until you get your thyroid dose in the right place, stay the course with your diet and concentrate on your thyroid.

Where do you live? Maybe someone can recommend a good doctor who won't jerk you around. Hang in there..you can get this straightened out with the right help.

I have to add that your "fever" of 98 degrees is the same for me. If my fever hits 100, it may as well be 105 because of low body temperature. I know the grief you are experiencing so I feel for you. We'll help you with this!
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#4 nvsmom

 
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Posted 28 September 2012 - 10:15 AM

The symptoms you describe (except the mouth sores) can occur while your thyroid is adjusting. I agree with you that your medication is very low for the symptoms you're having. Joint pain, hairloss, fatigue, etc., can occur if the thyroid levels are high OR low, and, as you know with Hashimoto's, the thyroid levels can go both ways for a while. When I was going through this period (took a good 18-24 months), I was taking Armour Thyroid, and even though my doctor was angry at me for doing this, I added 1/4 tablet when my symptoms worsened. Doctors get upset when patients "self-medicate," but the Armour Thyroid site says that adding 1/4 tablet is NOT dangerous. Once I settled on a dose that seemed to work, I let my doctor know what my prescription needed to be for the future--she promptly fired me as a patient for "self-medicating." I sent her a letter about letting her patients suffer because she did not fully understand how to treat patients with Hashimoto's and did not grasp how to treat a patient with Armour Thyroid (a medication she had absolutely NO experience with--the prescription had come from my previous doctor). So, anyway, I then shopped around for a doctor that had experience with Armour Thyroid and interviewed him first about his philosophy with regard to letting a patient self-adjust the dosage when the thyroid levels go up or down. That worked fine, but it's hard to find such doctors.

As you can see, treating Hashimoto's can be tricky....and it's even trickier with synthetic hormones. It is far more dangerous to adjust the dosage of your particular medication, because tests won't indicate a problem for several weeks. Thyroid levels with Armour Thyroid can be tested sooner. It's up to you what you want to do, but you may have to have a talk with your doctor...or change doctors once again. It is sad that doctors seem to have no idea how awful life can be with a thyroid that's out of whack--it truly is torturous.


Thanks so much for your reply! :)

Part of the reason I doubt it is thyroid related is because my symptoms suddenly occurred about one week after starting synthroid. That seems kind of funny to me; almost like it kicked off the symptoms. It last happened in June (when I felt mildly ill) but it was in my shoulder (that never left) but I can't think of any triggers then. I've had symetrical arthritic like pain that lasts a month or so and then disappears, since my very early twenties. Some times I can't lift my arms or hold a pencil, other times it's more of a stiffness and weakness thing where my joint don't do what they could just a few weeks before. I have a few aches that are there most of the time like bad knees from sports, and a bad sciatic back, but the joint thing is different...I think. ... At this point, who knows. LOL

I know what you mean about fluctuating numbers. 15 years ago I had a TSH of 6.7something and then they retested and it was down in the 4's a week later so the doc never mentioned it again. A few years back I was feeling good, and trying to get pregnant with my first when I discovered how low my temps are (usually in the 96's) and had my thyroid checked; it was 2 something so I was dismissed. This summer it's been 14 and 12 something so I'm harder to dismiss now. lol

I mentioned Armour to my doctor since it makes more sense to me than synthetic stuff that probably doesn't have things my body needs (besides T3, 2, & 1). His response was, "well, you know it's made from animals..." I just sat there thinking "yeah, I eat them all the time". I'm still not sure what point he was trying to make. LOL

Anyway, I know he is rigid, so I was thinking that I would be patient and get closer to the T4 dose I need (guessing and calculating close to 150mcg)and get my TSH closer to a 1, and then get him to switch me to part Armour. I know it's hard to regulate TSH with Armour so I was hoping that plan would work... I'm not sure if I'll have the patience for it though.

Thanks for the advice. I hope I don't have to fight like you did; that was a tough go!
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Nicole Posted Image

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Hypothyroid - August, 2012

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#5 nvsmom

 
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Posted 28 September 2012 - 10:43 AM

All of the symptoms you are having can be caused by an under treated thyroid problem. I have Hashi's also and have been doing this for 20 years so know the drill pretty well. What you need to do is find a doctor who will give you a T3 thyroid hormone like Armour or Nature-throid because with Hashi's, you really need T3. Forget about using the TSH test for dosing because that just does not work. You need to go by your T3 and T4 numbers....free T3 and T4. The one and only time I have had joint pain in my life was from my thyroid dose being too low. That will also cause hair loss...in a big way.

Don't get too wound up about the ANA test....it's just a general test that says you have inflammation in your body...it's non-specific. You can have elevated ANA from Hashi's and Celiac alone so it might not mean another pending AI disease. My ANA has NEVER been in the normal range but like yourself, I have multiple AI diseases.
4 of them, in fact. I have done very well with the gluten free diet, plus keeping the dairy light as I can't eat a lot of dairy. Do not cut out too many things from your diet, especially nightshades, because I am willing to bet that your under treated thyroid is the source of all your problems. It can cause flu-like symptoms also...you'll feel like horse pucky! I know many folks think nightshades are really bad but they also are veggies with nutrients and, until you get your thyroid dose in the right place, stay the course with your diet and concentrate on your thyroid.

Where do you live? Maybe someone can recommend a good doctor who won't jerk you around. Hang in there..you can get this straightened out with the right help.

I have to add that your "fever" of 98 degrees is the same for me. If my fever hits 100, it may as well be 105 because of low body temperature. I know the grief you are experiencing so I feel for you. We'll help you with this!


Thanks for the reply, Gemini. :)

My next thyroid labs will be TSH, T4, and T3. He didn't write on the word free so I'm assuming it will be totals. I had to argue to get a T3 test of any sort.

My latest batch of recurring symptoms started very shortly after I began taking 50mcg of synthroid, so I don't know how related to Hashi's it is. The hair loss had a very sudden restart then too. It went from losing the usual few hairs a day (it had slowed after going gluten-free) to it being everywhere (sink, food, bed, my shower looks like a long haired mouse exploded in the tub LOL). It could be my thyroid adjusting.... I don't know.

I was expecting the ANA to be high since I'd never had a normal one and Hashi's causes it to rise too. I've read on a lab info site that celiac does not cause a high ANA, and I haven't seen any conflicting info (yet), so I'm not sure if it's celiac linked. Anyway, this past test surprised me because it was a normal ANA (1:80) and I expected higher.

Cutting ice cream and cheese from my diet seems hard because I love those foods but I'll give it a go. At the very least, maybe it will help clear up my skin. I eat very few potatoes, yams or tomatoes, maybe a serving or two a week, so giving them up is not much of a stretch for me. I doubt they are causing me any issues too but I'll give it a try for now. My diet is pretty well rounded and heavy in the proteins and veggies. When I was first diagnosed I had my vitamin and mineral levels tested and they were all fine to above normal so I have no obvious deficiencies. My food vice is soda pop, but I want one vice. LOL

I'm in Alberta. Up here we have to be referred to a specialist or we can't get in. And specialists are rare. The wait to get into a GI for celiac is one year, and I don't think endocrinologists even see hypothyroid patients unless there is some major problem. GP's handle most everything whether they're qualified or not. :( I was thankful mine is sending me to a rheumy.

That fever thing is funny, eh? About once a year I'll get fevers over 100F (from some secondary infection) and at that point I can barely stand and am walking into walls. Yuck! LOL

Thanks again. :) I appreciate the support!
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Celiac - June, 2012
Hypothyroid - August, 2012

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#6 Gemini

 
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Posted 28 September 2012 - 11:47 AM

Thanks for the reply, Gemini. :)


Your welcome!

My next thyroid labs will be TSH, T4, and T3. He didn't write on the word free so I'm assuming it will be totals. I had to argue to get a T3 test of any sort.

My latest batch of recurring symptoms started very shortly after I began taking 50mcg of synthroid, so I don't know how related to Hashi's it is. The hair loss had a very sudden restart then too. It went from losing the usual few hairs a day (it had slowed after going gluten-free) to it being everywhere (sink, food, bed, my shower looks like a long haired mouse exploded in the tub LOL). It could be my thyroid adjusting.... I don't know.


You are not taking enough thyroid hormone so your hair loss and joint pain will just accelerate. 50mcg is nothing. These are in-your-face thyroid symptoms and until you are on the correct dose of hormone, your symptoms will not abate. The T3 and T4 tests are the "free" ones as most doctors never do the "reverse" ones. I am glad they included those!

I was expecting the ANA to be high since I'd never had a normal one and Hashi's causes it to rise too. I've read on a lab info site that celiac does not cause a high ANA, and I haven't seen any conflicting info (yet), so I'm not sure if it's celiac linked. Anyway, this past test surprised me because it was a normal ANA (1:80) and I expected higher.


The elevated ANA can most certainly be caused by Celiac but most doctors aren't smart enough to know that. I have read that it does and a great hematologist I saw a few years back also confirmed this. Most of the medical profession are in the dark ages with regards to AI diseases. I think your normal reading this time could just be fluctuations....that does happen but I am happy none-the-less that it is OK. Things can get very wonky with blood work with AI diseases.


I'm in Alberta. Up here we have to be referred to a specialist or we can't get in. And specialists are rare. The wait to get into a GI for celiac is one year, and I don't think endocrinologists even see hypothyroid patients unless there is some major problem. GP's handle most everything whether they're qualified or not. :( I was thankful mine is sending me to a rheumy.

That fever thing is funny, eh? About once a year I'll get fevers over 100F (from some secondary infection) and at that point I can barely stand and am walking into walls. Yuck! LOL

Thanks again. :) I appreciate the support!


Not all fevers are from infections. I think it somewhat normal for people with AI issues to pop weird fevers. I had to stop allergy shots because I started to pop a fever for 2-3 days after my shots. I really didn't need the shots anymore so that was OK by me. But I still have times, not too many, where I pop with a fever. It usually coincides with high allergy counts so that might be it. I am a space shot when that happens. :P
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#7 rosetapper23

 
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Posted 28 September 2012 - 01:55 PM

Please listen to Gemini--she is SO correct! I think the T3/T4 problem is why Synthroid didn't work for me. Rather than fixing the situation, my TSH shot up to 26.2 after two months!! I was a mess! If you add T4 and are unable to make your own T3, there is a huge imbalance. Armour Thyroid provides BOTH T3 and T4 (unlike Synthroid, which only supplies T4). Also, Gemini is correct about the dose you were given--there's no way your symptoms are going to be alleviated with such a low dose. Your doctor obviously has very little knowledge about Hashimoto's. He knows so little, he's afraid to increase your dose because if you're given too much of a synthetic thyroid hormone, you can die. With Armour, you increase the dose by 1/4 tablet over time until the symptoms stop.

Truly, your arthritis symptoms and hairloss are probably connected to Hashimoto's. You can feel very ill, fatigued, have memory problems, and simply not think straight when your thyroid hormones are low. Please set your doctor straight!
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#8 Gemini

 
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Posted 28 September 2012 - 02:09 PM

Please listen to Gemini--she is SO correct! I think the T3/T4 problem is why Synthroid didn't work for me. Rather than fixing the situation, my TSH shot up to 26.2 after two months!! I was a mess! If you add T4 and are unable to make your own T3, there is a huge imbalance. Armour Thyroid provides BOTH T3 and T4 (unlike Synthroid, which only supplies T4). Also, Gemini is correct about the dose you were given--there's no way your symptoms are going to be alleviated with such a low dose. Your doctor obviously has very little knowledge about Hashimoto's. He knows so little, he's afraid to increase your dose because if you're given too much of a synthetic thyroid hormone, you can die. With Armour, you increase the dose by 1/4 tablet over time until the symptoms stop.

Truly, your arthritis symptoms and hairloss are probably connected to Hashimoto's. You can feel very ill, fatigued, have memory problems, and simply not think straight when your thyroid hormones are low. Please set your doctor straight!


Isn't it just criminal how they under treat thyroid disease? If I hadn't found the doctor I have for my thyroid, I would still be a mess after 20 years. And....my PCP keeps bitching that I am being over medicated and she's supposed to be an expert on thyroid. Yeah, right! :blink:

I do still swing from time to time..that is, hypo to hyper but that usually occurs when I am under stress. It is very hard to nail down the thyroid just right and more work than going gluten free but it can be done. The thyroid is so susceptible to stress. And the fact that they still rely on Synthroid most of the time is malpractice, in my book. That only works if you don't have Hashi's and your thyroid is only a "little off." Otherwise, it's pretty much useless. People that don't take control of their treatment can end up in a mess, I'm afraid to say. I totally suppress my TSH and go by T3 and T4 and I can't tell you how many times doctors nearly have a coronary over that! <_<

I am still amazed at a TSH of 26!!!!! :o Mine was at 7 and I felt like I was going to die of fatigue....couldn't get out of bed.
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#9 nvsmom

 
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Posted 28 September 2012 - 07:07 PM

Gemini - Thanks again. Celiac causes a higher ANA too, eh? Maybe that's why mine was slower than expected... maybe my gluten-free diet is working already. :)

Yeah, I know I'm undertreated right now but the doctor was "starting" me at 50mcg so I had the feeling he expected to adjust it. I hope he hurries it up because I'm not sickly or elderly, I think I could take a sudden change. I'm hoping he'll double it to 100 and then I can start adding Armour... Of course who knows, maybe I'll be one of those lucky folks who will feel great on just Synthroid... yeah right. Ha! ;)

I doubt this doctor will let me supress my TSH to close to a 1. I have a feeling I'll get frustrated and leave him eventually but I'll give it a bit more time since he's only been treating me for hypothyroidism for about, ummmm, 5 weeks now. Plus it's REALLY hard to find GP's accepting patients around here. I've been untreated for years so I should be patient with this; a few more months won't kill me... just irritae me. LOL. I just hope partially treating my Hashi's doesn't cause me worse symptoms... and I hope this is all just a thyroid issue. The idea of having Lupus scares me.

Thanks a bunch Rosetapper and Gemini. You've helped me feel better about this. :) I appreciate it!
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Hypothyroid - August, 2012

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#10 Gemini

 
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Posted 29 September 2012 - 06:46 PM

Gemini - Thanks again. Celiac causes a higher ANA too, eh? Maybe that's why mine was slower than expected... maybe my gluten-free diet is working already. :)

Yeah, I know I'm undertreated right now but the doctor was "starting" me at 50mcg so I had the feeling he expected to adjust it. I hope he hurries it up because I'm not sickly or elderly, I think I could take a sudden change. I'm hoping he'll double it to 100 and then I can start adding Armour... Of course who knows, maybe I'll be one of those lucky folks who will feel great on just Synthroid... yeah right. Ha! ;)

I doubt this doctor will let me supress my TSH to close to a 1. I have a feeling I'll get frustrated and leave him eventually but I'll give it a bit more time since he's only been treating me for hypothyroidism for about, ummmm, 5 weeks now. Plus it's REALLY hard to find GP's accepting patients around here. I've been untreated for years so I should be patient with this; a few more months won't kill me... just irritae me. LOL. I just hope partially treating my Hashi's doesn't cause me worse symptoms... and I hope this is all just a thyroid issue. The idea of having Lupus scares me.

Thanks a bunch Rosetapper and Gemini. You've helped me feel better about this. :) I appreciate it!


As the ANA test is a test for general inflammation, any other AI diseases you may have can increase your inflammation levels. My ANA keeps dropping but ever so slowly. That's fine....as long as it keeps dropping.

I understand about sticking with your doctor for now. It is so stressful to find another doctor anywhere and you need to get going with treatment.
FYI....my TSH is generally around .01, not even 1. I had to suppress it that low to get my thyroid antibody levels down. They were sky high when I was diagnosed with Celiac and now, after 7 years, in the normal range.
Remember, TSH is not a thyroid test...it's a pituitary test. That's a lesson for another day! :D
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#11 Charli61

 
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Posted 30 September 2012 - 05:54 PM

Thanks so much for your reply! :)

Part of the reason I doubt it is thyroid related is because my symptoms suddenly occurred about one week after starting synthroid. That seems kind of funny to me; almost like it kicked off the symptoms. It last happened in June (when I felt mildly ill) but it was in my shoulder (that never left) but I can't think of any triggers then. I've had symetrical arthritic like pain that lasts a month or so and then disappears, since my very early twenties. Some times I can't lift my arms or hold a pencil, other times it's more of a stiffness and weakness thing where my joint don't do what they could just a few weeks before. I have a few aches that are there most of the time like bad knees from sports, and a bad sciatic back, but the joint thing is different...I think. ... At this point, who knows. LOL

I know what you mean about fluctuating numbers. 15 years ago I had a TSH of 6.7something and then they retested and it was down in the 4's a week later so the doc never mentioned it again. A few years back I was feeling good, and trying to get pregnant with my first when I discovered how low my temps are (usually in the 96's) and had my thyroid checked; it was 2 something so I was dismissed. This summer it's been 14 and 12 something so I'm harder to dismiss now. lol

I mentioned Armour to my doctor since it makes more sense to me than synthetic stuff that probably doesn't have things my body needs (besides T3, 2, & 1). His response was, "well, you know it's made from animals..." I just sat there thinking "yeah, I eat them all the time". I'm still not sure what point he was trying to make. LOL

Anyway, I know he is rigid, so I was thinking that I would be patient and get closer to the T4 dose I need (guessing and calculating close to 150mcg)and get my TSH closer to a 1, and then get him to switch me to part Armour. I know it's hard to regulate TSH with Armour so I was hoping that plan would work... I'm not sure if I'll have the patience for it though.

Thanks for the advice. I hope I don't have to fight like you did; that was a tough go!

Interestingly enough, I had much the same symptomology after starting synthroid, I stuck with it for two months, until my Dr. was happy with my levels. Then I very calmly ditched the synthroid. I am taking phytothyroid and thryosense. They are natural products meant to boost my thyroid production. I think they are working, it's only been a month, but I feel so much better. Truth to tell I felt wonderful as soon as the synthroid was out of my system, about 8 days. I think for some people synthroid is a bad choice. I haven't had my levels checked on the natural meds yet, I am waiting for the full 6 weeks recommended and will go from there. Just an idea... would your Dr. be open to you trying either natural or something like Armour?
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#12 nvsmom

 
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Posted 30 September 2012 - 07:26 PM

Interestingly enough, I had much the same symptomology after starting synthroid, I stuck with it for two months, until my Dr. was happy with my levels. Then I very calmly ditched the synthroid. I am taking phytothyroid and thryosense. They are natural products meant to boost my thyroid production. I think they are working, it's only been a month, but I feel so much better. Truth to tell I felt wonderful as soon as the synthroid was out of my system, about 8 days. I think for some people synthroid is a bad choice. I haven't had my levels checked on the natural meds yet, I am waiting for the full 6 weeks recommended and will go from there. Just an idea... would your Dr. be open to you trying either natural or something like Armour?


It could very well be the the synthroid... I did feel worse less than a week after starting it. Those symptoms flare up on me a few times a year though... I'll mention it to my doctor. I see him in two weeks after my 6 week lab check is done. I'm curious if that 50 mcg he has me on actually did anything. LOL

I doubt he'll give me Armour because he had quite a negative tone the first time I mentioned it to him. I will bring it up though.

Thanks Charli61. :)
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Hypothyroid - August, 2012

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#13 nvsmom

 
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Posted 12 October 2012 - 12:38 PM

I started this thread because I was concerned I might have lupus because of my symptoms, past AI disease history and past lab work. My recent lab work points away from a lupus diagnosis (see above posts), but now I FINALLY got the results of my ENA panel that was done 3 weeks ago. My lab sheet said:

Luminex testing of the following antigens Jo-1, RNP, Scl-70, Sm, SS-a/Ro60, Ro 52, SS-B/La, Ribo-P and CENP-B yielded the following results:

Negative or within normal limits

ENA Interpretation:
This patient does NOT have autoantibodies to known autoantigens.


I don't know what their normal ranges are. A zero is always better than.... say, a 4.5 if the range is 0-5.0. KWIM? But overall, that looks pretty good. My doctor did refer me to the local rheumatology triage (3 weeks ago) and I have yet to hear anything from them so for now I'll assume that it's my undertreated Hashimoto's or lingering celiac symptoms that are causing my problems.

I was in to see my GP today about adjusting my starter dose of synthroid. I still feel the same as I did before starting synthroid, and for the first 4 weeks I felt quite a bit worse with flu and fever like feeling,mouth sores, excessive hair loss and fatigue, migraine and some arthritic like symptoma that was (and still is but to a lesser extent) affecting my daily life. This is what led me to consider lupus or something similar. I asked my doctor if it could be thyroid related, perhaps I'm reacting to the synthroid, and he dismissed that idea... he is not the most knowledgeable in that area so who knows.

I am still fairly new to Hashi's and am in the learning stages, but from what I've learned so far, I can tell that I'm going to have issues with my GP after today's visit. He's just seems to be treating my labs and not my symptoms...

This is my entire thyroid lab history from new to old:

October 9, 2012 after 6 weeks on 50 mcg Synthroid
  • Total T3 - 1.3 nmol/L (range 1.1-2.8)
  • Free T4 - 15.3 pmol/L (10.0-25.0)
  • TSH - 7.55 mIU/L (0.20-6.00)
My only improvements was my constipation is gone and my hands and toes are slightly less cold. My pulse is up to 69 (from 60) but I don't know if that's particularly good or not. And while I'm happy that I can go to the bathroom faster, I felt worse about a week after starting synthroid: I felt flu-like, had an arthritic like flare-up, hair loss increased dramatically, very fatigued, some stomach issues (mildly upset, some pain, going bathroom (ahem) burned - not gluten related), face flushed more often, body temp still rarely breaks 97F... these were some of the symptoms that made me suspect lupus.

I reminded him of this but he pretty much said that my TSH is almost there (implying if he can get it below 6.00 it is normal) and that my T4 is pretty much where he wants it. T3 is a bit low so he wants to check it again in two or three months. I mentioned that I have read that most hypo patients feel best when their TSH is below 2.5 (I was thinking close to 1 but didn't want to get him defensive) and he basically said no because he doesn't want my T4 going too high because it can cause (I think he said) toxicosis... I assumme he meant Hasitoxicosis. I argued that wouldn't that happen when the TSH is below 0.5 or so? His response was something along the lines of "it's not just the TSH, we don't want your T4s to get too high." I noted my T4 was on the low end still, and I can't honestly remember his response. I was too busy thinking, " Oh crap, this will be a fight."

He prescribed 75 mcg Synthroid and was out the door.

August 12, 2012 -rechecking thyroid levels to confirm previous abnormal test
  • Free T4 - 11.6 pmol/L (10.0-25.0)
  • Thyroid Peroxidase Antibody - 33.8 kIU/L (0.0-34.0)
  • TSH - 13.42 mIU/L (0.20-6.00)
July 20, 2012 - patient requested thyroid check after a celiac diagnosis
  • TSH - 14.27 (0.20-6.00)
February 20, 2002 - patient requested thyroid test after I realized my body temp never broke 97F; concerned because trying to get pregnant with my first
  • TSH - 2.68 (0.20-6.00)
August 5, 2000 - a recheck of July's high TSH... now considered "normal" :blink:
  • TSH - 4.71 (0.20-6.00)
July 14, 2000 - after exam concerning sudden appearance of external hemihorroids, and concerns about heavy menstration and spotting
  • TSH - 6.74 (0.20-6.00)

Soooo, as far as I can tell, my total T3 is in the bottom 6% or so of the normal range, my free T4 is in the bottom 30% or so, and my TSH is much higher than my lowest TSH reading ever (2.68) when I was having hypo symptoms... I'm guessing 75 mcg of T4 won't cut it. Looks like I might need T3 too although it's early to tell. And no tests pointed clearly to lupus

Any advice? Am I interpreting this right? Should I bother shopping for a new doctor now or wait... I say that last only half jokingly. :blink:
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Nicole Posted Image

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Celiac - June, 2012
Hypothyroid - August, 2012

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#14 Gemini

 
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Posted 12 October 2012 - 02:19 PM

Hi Nicole......Gemini here. Methinks you need another doctor because this one clearly is not going to treat by symptoms and treating by labs never works
with Hashi's. Plus, you need to have the Free T3 done, not the total. I go by Free T4 and T3 to dose....never the TSH. As we have said before, the TSH is not a thyroid test, it's a pituitary test. They developed that because it's cost effective...has nothing to do with monitoring thyroid levels. You may include that to help diagnose that there is something going on but never use the TSH to monitor response to thyroid hormone. As I stated, I suppress my TSH and never go by that. I do have issues with swinging from low to high but it always occurs when I am stressed out. Not too often but it is normal for Hashi's patients to swing from low to high on occasion. The Free T3 and T4 are what's available for use by the body....what's floating around in the bloodstream, from what I understand.

You want your T3 and T4 to be in the middle to upper ranges of the normal range given by the lab...and use a lab that has updated ranges. I can get you those exact ranges from my lab reports, if you want. I use Genova Labs and they are excellent at updating ranges so people won't stay sick.

Also, all of your symptoms are definitely symptoms of hypo-thyroid. They can also be symptoms of lupus and this is why AI diseases are so hard to diagnose....they overlap with symptoms. I had joint pain in my hands that didn't resolve until I started getting the correct thyroid dose. That problem has never returned. Your symptoms will remain or worsen with a TSH that high, along with your low T3 and T4.

I will check in from time to time over the week-end but am busy right now so if I don't respond right away, please be patient. I will. I want to help you with this because not only was I jerked around with the Celiac diagnosis, I was jerked around with the Hashi's too. It took me awhile to find the right doctor. It just shouldn't be this hard to get good medical care for AI problems, but it is.
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#15 nvsmom

 
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Posted 12 October 2012 - 02:57 PM

Hi Gemini. Thanks. I appreciate your advice.

I know our labs are out of date but I don't have any real options. In my city, there is only one lab provider and since we are in Canada, there is no competition. I mentioned this to my doctor a month or so ago with regards to my 9 year old son's TSH which is 4.85 (0.20-6.00); it was tested after I told him of my son's slow growth and he noted my boy's slowed reflexes. I wanted more testing but he outright refused because the test was in normal range. I came back a week later and got a referral to a pediatrician (on Wednesday) who will hopefully help us out with this.

Anyway, I know it should be more like 0.5-3.0 but he claims our labs are different than the American system, and the testing procedure might be different so you can't compare; like how we measure cholesterol differently... Bull. The units are the same . :(

I also asked for free T's but a total T3 and a free T4 is what I got. Sigh. I suppose a total T3 that is that low means I have a pretty low free T3 too.

I don't think I have ever been hyper. I have had shaking hands but that is usually a hypoglycemic thing for me and is improving on the gluten-free diet. I'm usually more of a slug really... LOL

I'm going to start doctor shopping this week. I have someone in mind, I just hope he's taking patients. And to be honest, I'm afraid of offending and then losing my GP since MANY people here don't have a GP at all. Ah geez, I should have asked to be referred to an endocrinologist. Oops.
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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