Thyroid re-check today, wondering what's next???

[Lisa46]

I had my second visit with the doctor who FINALLY said my FT3 was low and I was probably hypo and not converting and no wonder I was fatigued and gaining weight and wanted to sleep all the time.

So, she started me on 1/2 grain of compounded Armour 4 weeks ago. I am not kidding when I say I have only felt worse since then. I am bloated almost all the time, my hair is coarse and literally falling out, my leg cramps and bruising are worse than ever and topping all that off, I've gained 2.5 pounds.

She drew labs to retest but I won't know the results for a few days. When I asked her about my worsening symptoms, she said that my thyroid is shutting down and that it will take awhile to get me optimized, and I THINK she scripted 1 grain of armour (she left my room without alot of direction). She also said that if I can't get the armour, that she would use Cytomel, I think that shows promise.

Here's my question. WHY do I feel worse than 4-5 weeks ago? Is it being on the compounded armour, or is it the fact that my thyroid isn't working as well as it did 4-5 weeks ago? I wonder what I would feel like if I HADN'T started taking the 1/2 grain? Would I feel this bad? Would I have been better off not starting the armour?

Probably hard to tell until I get the lab results, but gosh, I really do not understand feeling this crappy.

With all the insight here, I am hoping someone can help me push through this!

[Rdm]

It sounds like your meds are not optimized-maybe you need an increase. Some people do well on a combo of Synthroid/Cytomel instead of the Armour-YMMV everyone is different. Also have you had your Vitamin D and ferritin levels checked?

[2bflawless]

((((Lisa))))

I so hear you on the feeling worse part. My theory is we went so long without any help that we hit bottom or close to it before we were properly medicated. I am hoping that we both get the right dose soon and that in a month or so we will be posting how much better we feel! How frustrating that your doc left the room without more direction. Call her and leave a message that you want her to call you to discuss your treatment. Have your questions ready for when she returns your call and hopefully you'll feel better having gotten your questions answered. I'd specifically ask, "Why do I feel worse?" It's what I am going to be asking my doc tomorrow when I see him.


<<<hugs>>>

[Lisa46]

Originally Posted by 2bflawless

((((Lisa))))

I so hear you on the feeling worse part. My theory is we went so long without any help that we hit bottom or close to it before we were properly medicated. I am hoping that we both get the right dose soon and that in a month or so we will be posting how much better we feel! How frustrating that your doc left the room without more direction. Call her and leave a message that you want her to call you to discuss your treatment. Have your questions ready for when she returns your call and hopefully you'll feel better having gotten your questions answered. I'd specifically ask, "Why do I feel worse?" It's what I am going to be asking my doc tomorrow when I see him.


<<<hugs>>>

Flawless, so many questions we have, huh? I know on another site, they talk about the importance of upping Armour quickly, much faster (2 weeks) than the doctors are comfortable doing. So that makes me wonder, can you get sicker if you start armour and don't go up quick enough?

One good thing about this is I'm learning to be patient and now that I have a dr. who is willing to listen to me and seems to mostly 'get it', I don't want to blow it!

RDM - the dr. DID say I'm just not optimized yet, but my basic question persists: Am I seemingly getting worse because my thyroid is tanking and shutting down or is something about the Armour making my symptoms so awful? How could 1/2 grain even have much of an effect? When I asked the dr. that question, she said it's because my thyroid is not working as well and we have to raise armour slowly to help it out. Makes sense...

I've worked on D3 for a year 1/2 now and it's at a good level. My ferritin is still low, but I raised in from 9 to 45 in the last 6 months, which is quite a feat for me!

Thanks for your input, girls!

[nonstickpam107]

Sometimes when we get just a little thyroid incoming, the thyoid senses it and says 'Whew! FINALLY....I can go to sleep now" and shuts down. It happened all through my treatment...I got a grain of thyroid (split) and three weeks later, I felt even worse (called 'crashing') then another half grain, four weeks I felt GREAT, than I crashed again, had to wait another four weeks for testing, got another 1/2 grain, felt pretty good for a while (three MONTHS) than I (stupidly) overshot, up another grain, went hyper, and had to start ALL OVER AGAIN at 1/2 grain. Sigh.....So, you don't want to go too fast, but I'd want to be tested in FOUR WEEKS after you start a grain this next time. (Are you taking other BHRT too? cuz each time that's raised, it binds a little more of the incoming thyroid).

I know a whole three people doing 'better than Armour' on synthetics. I know 2457 patients doing very well on natural thyroid (Armour, Westhroid, Naturethroid, compounded dessicated natural). So..I guess 'someone' does better on it. Many have to take the combo synthetic right now but many are getting their natural thyroid through Canada, through their doctor, compounded, etc.

Pam

[veggienft]

Thyroid function is often the first brick to fall in multi-organ autoimmune disease.

I have hypoglycemia and Graves thyroid disease. I am successfully treating it with diet alone. The core of the diet is elimination of sugar and gluten along with a few other agricultural proteins.

I hate to write the same stuff repeatedly. With the mod's permission, here's a link to my explanation:

Diabetes Forum &bull; Peoples ignorance!!

This is about growing harmful microorganisms with ingested sugar. The immune system mistakes ingested protein for the microorganisms. It attacks the protein and the tissue it touches .........autoimmune disease.

Commonly people try low carb diets to lose weight. People suffering autoimmune symptoms often seek low carb diets because they are known to work against autoimmune diseases and conditions.

The reason low carb diets work against autoimmunity is that they severely trim back gluten and sugar consumption. Because you have an autoimmune disease, trimming back isn't enough. You must eliminate all sugar, all gluten, and all other offending protein.

Stop ingesting sugar and gluten. Then identify the other proteins which cause the same symptoms.

The supplemental thyroid hormone you are taking is intended to replace the hormone your thyroid stopped producing. If my diet regime works, and it should, you will be operating on a double load of thyroid hormone. You'll need to stop supplementing.
..

[nonstickpam107]

Stopping sugar and gluten didn't cure my autoimmune diseases. I still have all five of them.

Pam

[Rdm]

Originally Posted by nonstickpam107

Sometimes when we get just a little thyroid incoming, the thyoid senses it and says 'Whew! FINALLY....I can go to sleep now" and shuts down. It happened all through my treatment...I got a grain of thyroid (split) and three weeks later, I felt even worse (called 'crashing') then another half grain, four weeks I felt GREAT, than I crashed again, had to wait another four weeks for testing, got another 1/2 grain, felt pretty good for a while (three MONTHS) than I (stupidly) overshot, up another grain, went hyper, and had to start ALL OVER AGAIN at 1/2 grain. Sigh.....So, you don't want to go too fast, but I'd want to be tested in FOUR WEEKS after you start a grain this next time. (Are you taking other BHRT too? cuz each time that's raised, it binds a little more of the incoming thyroid).

I know a whole three people doing 'better than Armour' on synthetics. I know 2457 patients doing very well on natural thyroid (Armour, Westhroid, Naturethroid, compounded dessicated natural). So..I guess 'someone' does better on it. Many have to take the combo synthetic right now but many are getting their natural thyroid through Canada, through their doctor, compounded, etc.

Pam

I am on Synthroid/Cytomel and doing so much better than when I was on Armour. My endo & I were discussing the Armour situation-he said that many of his patients have had trouble with Armour in the past year. I realize you are very knowledgable but YMMV-no two people are alike.

[inatic]

Originally Posted by nonstickpam107

Stopping sugar and gluten didn't cure my autoimmune diseases. I still have all five of them.

Pam

errrrrrrrrrrrrrrr............

didnt cure mine either! Still have them too.

[Lisa46]

Originally Posted by nonstickpam107

Sometimes when we get just a little thyroid incoming, the thyoid senses it and says 'Whew! FINALLY....I can go to sleep now" and shuts down. It happened all through my treatment...I got a grain of thyroid (split) and three weeks later, I felt even worse (called 'crashing') then another half grain, four weeks I felt GREAT, than I crashed again, had to wait another four weeks for testing, got another 1/2 grain, felt pretty good for a while (three MONTHS) than I (stupidly) overshot, up another grain, went hyper, and had to start ALL OVER AGAIN at 1/2 grain. Sigh.....So, you don't want to go too fast, but I'd want to be tested in FOUR WEEKS after you start a grain this next time. (Are you taking other BHRT too? cuz each time that's raised, it binds a little more of the incoming thyroid).


Pam

Awwww...snap, Pam...that is what I was afraid of. I have yet to feel good, not sure if I even know what "good" feels like anymore but it's so weird to think that 1/2 grain could cause all that havoc! Thank you SO much for the explanation, it really does make sense! I'm getting my hair cut off tomorrow, if it's going to fall out, I might as well just get it over with!

RDM, it's good to know that you have had success on the synthetics! It can be done, then!

And, me thinks I may have a troll in my thread...should I be honored???

[nonstickpam107]

Originally Posted by Rdm

I am on Synthroid/Cytomel and doing so much better than when I was on Armour. My endo & I were discussing the Armour situation-he said that many of his patients have had trouble with Armour in the past year. I realize you are very knowledgable but YMMV-no two people are alike.

Armour was reformulated in the last year...and some have antibodies reaction to it. So..now there is one more person who likes it 'better' (has nothing to do with MY knowledge....but I will pass that on to others). Are you on the same amount of T4 and T3 that was in the Armour? (Many who are 'switched over to synthetic combo' don't get the same amount...as in: a patient was on two grains of Armour and her doc switched her over to 50mcg. T4 and 10mcg. Cytomel...that's not an equal 'switch'. Another patient was on ONE grain Armour but was switched out to 75mcg. T4 and 15mcg. Cytomel (the combo being almost double what she was on).

Almost NO patient likes the reformulated Armour currently available, but they like being switched to LESS hormone overall even less.

Pam

[nonstickpam107]

Originally Posted by Lisa46

Awwww...snap, Pam...that is what I was afraid of. I have yet to feel good, not sure if I even know what "good" feels like anymore but it's so weird to think that 1/2 grain could cause all that havoc! Thank you SO much for the explanation, it really does make sense! I'm getting my hair cut off tomorrow, if it's going to fall out, I might as well just get it over with!

RDM, it's good to know that you have had success on the synthetics! It can be done, then!

And, me thinks I may have a troll in my thread...should I be honored???

Oh, absolutely!!! I learn something new every day. I learned that giving up carbs, gluten and sugar should have cured all my autoimmune diseases and someone else told me Bandaids cure cancer. Hmmmm.

Pam

[veggienft]

Originally Posted by inatic

errrrrrrrrrrrrrrr............

didnt cure mine either! Still have them too.

As my link explains, one link in the cause chain is herpes infection of the orexin system. You must treat it as well ........and keep it treated.
..

[nonstickpam107]

Does anyone have a Bandaid?

Pam

[Unicorn212]

Originally Posted by nonstickpam107

Oh, absolutely!!! I learn something new every day. I learned that giving up carbs, gluten and sugar should have cured all my autoimmune diseases and someone else told me Bandaids cure cancer. Hmmmm.

Pam

I guess it only works if you have herpes, too....

[2bflawless]

Originally Posted by Lisa46

Awwww...snap, Pam...that is what I was afraid of. I have yet to feel good, not sure if I even know what "good" feels like anymore but it's so weird to think that 1/2 grain could cause all that havoc! Thank you SO much for the explanation, it really does make sense! I'm getting my hair cut off tomorrow, if it's going to fall out, I might as well just get it over with!
RDM, it's good to know that you have had success on the synthetics! It can be done, then!

And, me thinks I may have a troll in my thread...should I be honored???

Girlfriend, any more similarities and I'd swear you were my twin! I just cut my hair into a short bob, not because it was thinning anymore, Metformin & Biotin have helped tremendously, but I just didn't have the energy to style my long hair (midback length) anymore. Shorter is much easier, plus dry shampoo helps with not having to wash and restyle either, I suggest you get some of that too!

P.S. Post a pic!

[Redeemed]

I had such severe leg pain after starting SInthroid and Cytomel, I could barely stand it. I cut back on my Cytomel. I was supposed to take two five mg. tabs Cytomel in the AM and PM. However, since taking the Sinthroid in the AM one Cytomel three times a day I feel much better, no leg pain. We're all different. I needed less, not more.

[nonstickpam107]

Originally Posted by Unicorn212

I guess it only works if you have herpes, too....

Do you need a prescription for that?

Pam

[Lisa46]

Originally Posted by 2bflawless

Girlfriend, any more similarities and I'd swear you were my twin! I just cut my hair into a short bob, not because it was thinning anymore, Metformin & Biotin have helped tremendously, but I just didn't have the energy to style my long hair (midback length) anymore. Shorter is much easier, plus dry shampoo helps with not having to wash and restyle either, I suggest you get some of that too!

P.S. Post a pic!

Not a short bob, but I got my hair cut...mid length, next cut will be short short short! Of course, if it falls out completely, there'll be no decision to make next time!

I'm still waiting for the doctor to get my last lab result in and let me know what she is going to do with my med. I really think the Compounded Armour (1/2 grain) is crap and doing nothing for me except increasing my weight and making me feel like crap. I want to try Cytomel, if nothing more than to try to stop the weight increase. If this doc cannot agree to work with me, I have to move on and find someone else.

[dollface#10]

I felt great on the old Armour. The last year of my life was awful. Fatigue, wt gain, knee pain. To make a long story short, I am now taking cytomel and synthroid (generic).
I feel much better, not a 100%. I will go get labs again soon. I would take this over reformulated Armour anyday. I'm going to continue with this for a while and see if I continue to improve. Just thought I would share.

[2bflawless]

Originally Posted by Lisa46

Not a short bob, but I got my hair cut...mid length, next cut will be short short short! Of course, if it falls out completely, there'll be no decision to make next time!

I'm still waiting for the doctor to get my last lab result in and let me know what she is going to do with my med. I really think the Compounded Armour (1/2 grain) is crap and doing nothing for me except increasing my weight and making me feel like crap. I want to try Cytomel, if nothing more than to try to stop the weight increase. If this doc cannot agree to work with me, I have to move on and find someone else.

(((hugs))) Hang in there, maybe this doc will listen. Have you tried the Armour website for a list of their docs? I found my doc there and he does listen.

[nonstickpam107]

Originally Posted by Lisa46

Not a short bob, but I got my hair cut...mid length, next cut will be short short short! Of course, if it falls out completely, there'll be no decision to make next time!

I'm still waiting for the doctor to get my last lab result in and let me know what she is going to do with my med. I really think the Compounded Armour (1/2 grain) is crap and doing nothing for me except increasing my weight and making me feel like crap. I want to try Cytomel, if nothing more than to try to stop the weight increase. If this doc cannot agree to work with me, I have to move on and find someone else.

Have you called the compounder and talked about SR compounded natural? (Slow release). And 1/2 grain wouldn't cut it with your labs for me either. Call the compounder, (cuz the compounding powder isn't brand Armour reformulated, it's generic) and get that info about SR, then call the doc and ask to go to one grain compounded SR. OH, and ask just WHAT the compounding ingredients ARE..some compounders like to put in methyl cellulose (it's a swelling fiber...and it swells some people up with water weight). If it's a 'fiber' ask if the compounder can compound with olive oil or something else. Just some ideas

Pam

[nonstickpam107]

Originally Posted by dollface#10

I felt great on the old Armour. The last year of my life was awful. Fatigue, wt gain, knee pain. To make a long story short, I am now taking cytomel and synthroid (generic).
I feel much better, not a 100%. I will go get labs again soon. I would take this over reformulated Armour anyday. I'm going to continue with this for a while and see if I continue to improve. Just thought I would share.

I'd rather have Cytomel than the reformulation too, I don't blame ya! But Im anaphylactically allergic to Synthroid (levothyroxine) they use a lot of corn to make that. I'm so glad you are feeling better! I hope you continue to feel better too.

Pam

[Lisa46]

Originally Posted by nonstickpam107

Have you called the compounder and talked about SR compounded natural? (Slow release). And 1/2 grain wouldn't cut it with your labs for me either. Call the compounder, (cuz the compounding powder isn't brand Armour reformulated, it's generic) and get that info about SR, then call the doc and ask to go to one grain compounded SR. OH, and ask just WHAT the compounding ingredients ARE..some compounders like to put in methyl cellulose (it's a swelling fiber...and it swells some people up with water weight). If it's a 'fiber' ask if the compounder can compound with olive oil or something else. Just some ideas

Pam

I called the compounder this week and he uses Avicel. He was crabby and when I asked additional questions about more options, etc. he was very defensive. I almost hung up on him.

Today my dr. is SUPPOSED to be calling me back with my lab results that were taken Monday. When I saw her Monday, she KNEW I had gained weight and asked some of the right ?'s: are you bloated, puffy, is your hair falling out, is your hair coarse? I'm like YES YES YES, and I told you all of that the first time I saw you, and remember the leg cramps and joint/muscle PAIN.

We talked about possibly using Cytomel if this compounded armour isn't working, so I am praying that when I next talk to her she can help me out.

Otherwise, I'm on to a new dr. AND a new pharmacy! I'm tired, you guys. Just want this to be over.

Thanks everyone for your input, it is more than I could hope for.

[2bflawless]

Lisa, I completely understand your pain. All the same symptoms here and yes, patience is wearing thin when you have to repeat what you already told the doctor. Stay strong and tell her the Armour is not working and that you WANT to try the Cytomel. Don't be afraid to ask for it specifically. Tell her you feel WORSE, if she worth her grain in salt she will prescribe it. Good luck!!!!!! <<<hugs>>>

[inatic]

((hugs))

some people dont respond to the compounded amour.

[CindyCRNA]

Lisa, when i went hypo (from starting BHRT), my hair looked like straw and was falling out. It took 3 months to get it turned around and it is now growing back in. It took the addition of Cytomel 25mcgs split to turn my hair around but not my body. I had to switch to desiccated to FEEL better.

[Lisa46]

Originally Posted by CindyCRNA

Lisa, when i went hypo (from starting BHRT), my hair looked like straw and was falling out. It took 3 months to get it turned around and it is now growing back in. It took the addition of Cytomel 25mcgs split to turn my hair around but not my body. I had to switch to desiccated to FEEL better.

Cindy, how do you know you started going hypo from BHRT? I have never put two and two together but now that I think about it, after I started BHRT in 06, after an initial huge weight loss, it just kept creeping up and up and my symptoms got worse and worse!

Cindy,how much dessicated are you taking? In what form? Did you find a pharmacy that fills it? And mostly, do you have a good doc? I see you are in the midwest, I have been searching for years for someone who truly understands the hormones. My friend in Florida keeps saying "but, you live in Minnesota, for god sake, you are supposed to have the best docs in the country there." What can I say?

Again, thanks for the comments, ladies, I am learning, learning, learning.

[nonstickpam107]

UNbalanced hormones trigger hypothyroidism. So..if the doc puts you on BHRT, it 'binds' the thyroid hormones (cuz then you are unbalanced...your sex hormones are being replaced but not the thyroid hormones), and as you go along on BHRT....everytime my BHRT Rx. changed, my thyroid needs ALSO changed. As my doc would do BHRT, he would up my thyroid incoming also.

Yeah, Florida and New York state(s) are very difficult to find a good thyroid doc...and there are docs there that do BHRT, and just SKIP over thyroid completely and tell ya only TSH matters. I've never heard that Minnesota was 'great' for hormone or thyroid docs...maybe cuz you have a large women's retail pharmacy there (you know which one if you live there, but that one also pushes OTC soy and wild yam with no Rx....doesn't mean they are good with hormones). Actually, thyroid docs who 'get it' are getting few and far between. Most docs are 'uneducated' in school..they push synthetics and that 'every human converts T4 to T3 in the liver'...with education like that....jeez...it's not any wonder it's difficult to find someone good.

Pam