thyroid - needs hugs and encouragement

[gardenmom5]

I've been on levo for at least six years.  last fall, on my own, I added in emerald laboratories bovine desiccated thyroid.  eventually I was taking 2am and 1pm along with the levo during the week (I dropped weekends as I'd end up hyper.). I felt better and had more energy than I had in years, and my #s were better.  I had no support from my allopath.  anyway, last winter  I ended up switching to a naturopath for another health issue and now we are addressing my thyroid.  I have completely switched to NDT (though the pharmacy gave me the wrong brand - she'd listed no substitutions.  growl.)

 

anyway - I'm determined to stay the course, but am having a very difficult time.  I'm now completely on NDT.  I know from reading sttm the typical dose is probably twice what I'm currently on, and my ND won't raise it without blood work.  (I know about iron and cortisol.).  but

 

 

I. feel. horrible.  I haven't had such awful hypo symptoms in eons.  wanting to sleep 18 hours (lots of napping) a day is minor compared to the emotional upheaval and being on the edge of falling apart.   and I have things to do.

 

I'm going on vacation in a week . . . . . I'd sorta like to have energy.  I'd kinda like to have stabile moods. . .

 

I'd really like to feel at least as good as I did three weeks ago.

 

I'm going to have my blood drawn for the ND before we leave on vacation, then when I get back we can discuss raising the NDT.

 

I do feel like my adrenalin may be down - as I'm used to this underlying constant tension that makes it more difficult to sleep, and I'm not feeling  it anymore.

 

but, I want to feel good again . . .

[happi duck]

(hugs)

[Pawz4me]

:grouphug:  :grouphug:  :grouphug:

[Joules]

Can you call your ND and add back a small dose of the levo for a week?  Vacations don't come around very often, and it sucks to be miserable during that time.  You'll have plenty of time after vacation to adjust to the new regiment.  

[Soror]

(HUGS)

A month or so before our vacation I had a really rough time and I was terrified I wouldn't be able to function.

 

So are you about on 1.5 grains of NDT and that is it? 

 

I had been on 1.5 grains + 20 mcg of cyto and was still decidely hypo by my BP/Pulse and Temp so I upped it on my own. Then I just felt worse, like my I was dragging my body through sludge with every step. When I got onto the STTM FB group(highly recommend) I realized that I was likely pooling and/or had high RT3 and I was right my bloodwork showed a RT3 of 20, anything over 11 is too high. I cut back my NDT to 1 grain and nearly immediately felt better. Next time I talked to my dr I pushed hard telling her how bad I had felt and got an increase in Cyto- 25 mcg - 2x a day(which was really too much) anyway- that was a rough transition as it was too much too quick so I had a very rough couple of weeks of sweating like a crazy women but it did line out. I'm still on 1 grain NDT, 55 mcg of Cyto(25mcg is equivalent to 1 grain so I'm on a bit more than 3 grains total). My last numbers were perfect- my FT3 is a bit above range and my RT3 9

 

. So, it could be that NDT alone is not going to cut it, having a mix of NDT and T3 is very common, some people go straight T3 even. Some of us have conversion issues. Low iron and cortisol issues can cause this- I'm not sure for me my iron was not quite optimal(although it was much worse) and my cortisol is the same(getting ready to retest it).

 

I feel pretty good now. I'm finally sleeping at night and waking up in the am. My energy could be higher at certain points in the day but I think that is a cortisol issue that I hope to start working on in the next few weeks as soon as I get my results in. I didn't really make the best progress until I pushed for monthly appointments and blood draws and seriously pushed for increases.

 

For you I'd get your-

FT3, FT4, TSH and RT3 for your thyroid

Total Iron, TIBC, Iron Sat and Ferritin

4 pt cortisol test

 

How soon could you get in? I think I'd try to go sooner than right before vacation. I would consider cutting the NDT and seeing if that helps, even if you can't get labs. As with me it could be a conversion issue and it might make you actually feel better. You might also consider calling and asking for a starter dose of Cyto(you need to start slow if you've not been on it)- 5mcg is typical. I would not add in more Levo or NDT until after your tests both will just give you more T4 and if you aren't converting it won't help. It seems it is typical to have multiple problems at once often treating the thyroid can reveal adrenal issues. My dec cortisol test showed somewhat low on the first 2 points and then perfect on the last 2, I'm afraid my results this time will be worse. I should have treated it then but I couldn't find anything that addressed it for the level I was at- which was fairly mild- on the FTPO STTM Adrenal group now I see there were things I could have done. I'm also pushing my iron, evidently my levels just don't want to stay up so I have to keep an eye on it. I've ordered lactoferrin too to help w/ absorption as my TIBC is too low. My b12 level isn't horrible but not quite optimal so I finally ordered hydroxy B's instead of methyls as I wondered if the methyls weren't causing some of the issues I was having and my difficulty getting my range to optimal instead of just good enough. I've only been on the hydroxy B's 2 days but I swear I already tell a difference- fingers crossed it is sustained and not just in my head!

 

 

Edited June 11, 2016 by soror

[Lizzie in Ma]

:grouphug: :grouphug:

[Soror]

I need to ask my naturopath to do this with me.  I'm on 1 grain NDT and I can't get any higher or I feel hyper.  I know I have adrenal problems and that may be the problem.  My dilemma is that I feel pretty darn good on the 1 grain so why mess with it?  I do have Hashi's so there may be some issues down the road if I don't treat optimally.  STTM says to treat by symptoms but I don't really have any so my numbers are I have.

 

 

 

 

 

For 1.5 yrs I'd get to feeling good and then so many months later I wouldn't. My numbers were never close to optimal in that time, in range but not optimal. When I was feeling good I couldn't find any reason to push it but after crashing 1 too many times I'm trying to address it all. It is a pain and expensive but I think we are just shooting ourselves in the foot if we don't get it taken care of, it sucks. I'm Hashi too.

[gardenmom5]

Can you call your ND and add back a small dose of the levo for a week?  Vacations don't come around very often, and it sucks to be miserable during that time.  You'll have plenty of time after vacation to adjust to the new regiment.  

 

she wants to check my levels before increasing.  I will go in for a blood draw before we leave so she'll have my numbers when I come back.  I will do something while we're gone . . I've no idea what.  I'll ask her for some suggestions.

 

we're going to Banff - something I've wanted to do for a long time.  I'd like to feel well enough to actually "enjoy it"!

 

(HUGS)

A month or so before our vacation I had a really rough time and I was terrified I wouldn't be able to function.

 

So are you about on 1.5 grains of NDT and that is it? 

 

I had been on 1.5 grains + 20 mcg of cyto and was still decidely hypo by my BP/Pulse and Temp so I upped it on my own. Then I just felt worse, like my I was dragging my body through sludge with every step. When I got onto the STTM FB group(highly recommend) I realized that I was likely pooling and/or had high RT3 and I was right my bloodwork showed a RT3 of 20, anything over 11 is too high. I cut back my NDT to 1 grain and nearly immediately felt better. Next time I talked to my dr I pushed hard telling her how bad I had felt and got an increase in Cyto- 25 mcg - 2x a day(which was really too much) anyway- that was a rough transition as it was too much too quick so I had a very rough couple of weeks of sweating like a crazy women but it did line out. I'm still on 1 grain NDT, 55 mcg of Cyto(25mcg is equivalent to 1 grain so I'm on a bit more than 3 grains total). My last numbers were perfect- my FT3 is a bit above range and my RT3 9

 

. So, it could be that NDT alone is not going to cut it, having a mix of NDT and T3 is very common, some people go straight T3 even. Some of us have conversion issues. Low iron and cortisol issues can cause this- I'm not sure for me my iron was not quite optimal(although it was much worse) and my cortisol is the same(getting ready to retest it).

 

I feel pretty good now. I'm finally sleeping at night and waking up in the am. My energy could be higher at certain points in the day but I think that is a cortisol issue that I hope to start working on in the next few weeks as soon as I get my results in. I didn't really make the best progress until I pushed for monthly appointments and blood draws and seriously pushed for increases.

 

For you I'd get your-

FT3, FT4, TSH and RT3 for your thyroid

Total Iron, TIBC, Iron Sat and Ferritin

4 pt cortisol test

 

How soon could you get in? I think I'd try to go sooner than right before vacation. I would consider cutting the NDT and seeing if that helps, even if you can't get labs. As with me it could be a conversion issue and it might make you actually feel better. You might also consider calling and asking for a starter dose of Cyto(you need to start slow if you've not been on it)- 5mcg is typical. I would not add in more Levo or NDT until after your tests both will just give you more T4 and if you aren't converting it won't help. It seems it is typical to have multiple problems at once often treating the thyroid can reveal adrenal issues. My dec cortisol test showed somewhat low on the first 2 points and then perfect on the last 2, I'm afraid my results this time will be worse. I should have treated it then but I couldn't find anything that addressed it for the level I was at- which was fairly mild- on the FTPO STTM Adrenal group now I see there were things I could have done. I'm also pushing my iron, evidently my levels just don't want to stay up so I have to keep an eye on it. I've ordered lactoferrin too to help w/ absorption as my TIBC is too low. My b12 level isn't horrible but not quite optimal so I finally ordered hydroxy B's instead of methyls as I wondered if the methyls weren't causing some of the issues I was having and my difficulty getting my range to optimal instead of just good enough. I've only been on the hydroxy B's 2 days but I swear I already tell a difference- fingers crossed it is sustained and not just in my head!

 

yes.

it's very perverse - at 1 1/2 for 3 days - I felt almost hyper.  so,  I dropped back down.  but at 1 - I feel seriously hypo.  I want to sleep or cry most of the time. yesterday I went back to 1 1/2.   I had also read to chew the tablets to aid in absorption.  (the cellulose used as a binder inhibits absorption.)  I might try cutting one in half and do 1 1/4 . . .

 

I might also take the levo with me and get some more bovine desiccated thyroid as I felt fairly good on a combo of the two (though my t3 was still low.  t4 & tsh were bordering/thinking-about being optimum.)

 

I've been taking an iron supplement, as I know anemia is one thing that can be exposed by ndt.   hmm - my dd gave me her adrenal supplement.  I might try that to see if it helps - but AFTER I have a blood draw.  I don't want it to affect the numbers.  

 

I've been on a good quality methylated b-complex for a few years - I also take mthf I get from a compounding pharmacy (they use the same source as thorne - for half the price.).   I may suck it up and get my ndt from them too.  (the pharmacy I had my rx filled at switched brands - even though the script said the given brand only.)

[J-rap]

I'm sorry!  That sounds miserable.  No advice here, but I hope you're feeling better soon.  I hear Banff is beautiful!  (Passed through it once on a train, many years ago.)  I have no thyroid at all (mine was entirely removed about 20 years ago), and have been on synthroid ever since.  I think that's easier than still having a thyroid and needing to figure out the right dosage as your body changes.  I still have to figure out the correct dosage, but it's more cut and dry.

 

[Ellie]

I've been on levo for at least six years.  last fall, on my own, I added in emerald laboratories bovine desiccated thyroid.  eventually I was taking 2am and 1pm along with the levo during the week (I dropped weekends as I'd end up hyper.). I felt better and had more energy than I had in years, and my #s were better.  I had no support from my allopath.  anyway, last winter  I ended up switching to a naturopath for another health issue and now we are addressing my thyroid.  I have completely switched to NDT (though the pharmacy gave me the wrong brand - she'd listed no substitutions.  growl.)

 

anyway - I'm determined to stay the course, but am having a very difficult time.  I'm now completely on NDT.  I know from reading sttm the typical dose is probably twice what I'm currently on, and my ND won't raise it without blood work.  (I know about iron and cortisol.).  but

 

 

I. feel. horrible.  I haven't had such awful hypo symptoms in eons.  wanting to sleep 18 hours (lots of napping) a day is minor compared to the emotional upheaval and being on the edge of falling apart.   and I have things to do.

 

I'm going on vacation in a week . . . . . I'd sorta like to have energy.  I'd kinda like to have stabile moods. . .

 

I'd really like to feel at least as good as I did three weeks ago.

 

I'm going to have my blood drawn for the ND before we leave on vacation, then when I get back we can discuss raising the NDT.

 

I do feel like my adrenalin may be down - as I'm used to this underlying constant tension that makes it more difficult to sleep, and I'm not feeling  it anymore.

 

but, I want to feel good again . . .

 

:grouphug: :grouphug: :grouphug:

 

You feel horrible because you need a higher dosage (you should have started at 60-65mg/one grain), and you need to increase it every 10 days to two weeks until you feel better, and *then* you test after you've been there for a couple of weeks. If your naturopath will not increase it, then find another one who will. I understand your frustration, but the truth is that most people go to *five* different doctors before finding the one who will treat them properly.

 

The labs your naturopath should be ordering are Free T3, Free T4, and Reverse T3. Total T3 and all those other things are interesting but not actually useful. If your naturopath will not order those, then find another one. Actually, now that I know what I know, if I were in your position, I'd be looking for another medical practitioner now.

 

[Soror]

she wants to check my levels before increasing.  I will go in for a blood draw before we leave so she'll have my numbers when I come back.  I will do something while we're gone . . I've no idea what.  I'll ask her for some suggestions.

 

we're going to Banff - something I've wanted to do for a long time.  I'd like to feel well enough to actually "enjoy it"!

 

 

yes.

it's very perverse - at 1 1/2 for 3 days - I felt almost hyper.  so,  I dropped back down.  but at 1 - I feel seriously hypo.  I want to sleep or cry most of the time. yesterday I went back to 1 1/2.   I had also read to chew the tablets to aid in absorption.  (the cellulose used as a binder inhibits absorption.)  I might try cutting one in half and do 1 1/4 . . .

 

I might also take the levo with me and get some more bovine desiccated thyroid as I felt fairly good on a combo of the two (though my t3 was still low.  t4 & tsh were bordering/thinking-about being optimum.)

 

I've been taking an iron supplement, as I know anemia is one thing that can be exposed by ndt.   hmm - my dd gave me her adrenal supplement.  I might try that to see if it helps - but AFTER I have a blood draw.  I don't want it to affect the numbers.  

 

I've been on a good quality methylated b-complex for a few years - I also take mthf I get from a compounding pharmacy (they use the same source as thorne - for half the price.).   I may suck it up and get my ndt from them too.  (the pharmacy I had my rx filled at switched brands - even though the script said the given brand only.)

re: b12- Have you read that not everyone w/ MTHFR can tolerate methylated B(no matter the brand)? For people that have other mutations as well they need hydroxy B12, it is the only b12 safe for every mutation. I didn't know that until recently and just switched because I don't know my full genetic profile and some issues I was having could possibly be related.

 

I wouldn't take an adrenal support willy nilly because low cortisol and high cortisol can feel the same and you might end up taking something that does more harm than good. 

 

Sometimes you feel a bit hyper when upping meds but usually it will pass. I keep an eye on my bp and pulse- it might just be that your body needs to get used to it. It sounds like she has kept you on a starter dose too long btdt!!! I'm not an expert though. As I said it could be that your body can't convert or handle it due to iron, adrenals, etc. IIRC correctly the profile of your T4 raising but your T3 staying low fits the conversion problem but I'd recommend joining the FTPO STTM Thyroid Group and posting your labs. There is a lot to it, even more nuanced than the book or website. Fwiw b/c I'm on mostly T3 w/ a bit of NDT my T4 is low on the range but that is to be expected considering I take mostly T3 so my body doesn't have to convert it. My TSH is undectably too, with NDT your TSH will be suppressed until it is you aren't to optimal dosing. 

[gardenmom5]

:grouphug: :grouphug: :grouphug:

 

You feel horrible because you need a higher dosage (you should have started at 60-65mg/one grain), and you need to increase it every 10 days to two weeks until you feel better, and *then* you test after you've been there for a couple of weeks. If your naturopath will not increase it, then find another one who will. I understand your frustration, but the truth is that most people go to *five* different doctors before finding the one who will treat them properly.

 

The labs your naturopath should be ordering are Free T3, Free T4, and Reverse T3. Total T3 and all those other things are interesting but not actually useful. If your naturopath will not order those, then find another one. Actually, now that I know what I know, if I were in your position, I'd be looking for another medical practitioner now.

 

 

the only test the ND didn't do was rt3 - she/ND did the free t3 & free t4 (and tsh to compare it to my previous numbers).  my last dr wouldn't despite my specifically asking repeatedly (ld/do required me to come in every three months just to get a rx.) - ld/do even lied to me, telling me she would order free t3 & free t4 - but she only ordered the totals.  worthless. I was pretty angry. it was the last straw that prompted me to go to the naturopath.  (with whom I had been wanting to start as she is extremely experienced with mthf - and I'm  homozygous.)

 

my ND is the second dr I've been to in the last six months.   I do think we will get it figure out.

 

I'm taking (was two, now three) 32.5mg  pills - two in the am and one at noon.  I thought that was equivalent to 1 1/2 grains.  so 1 pill is 1/2 grain.  I may be misunderstanding terminology.    on 1grain (2 pills) - i'm seriously hypo, on 1 1/2 grains - I feel hyper.  actually - as I was thinking about it - I feel drugged.  almost like I do on codeine?  though I did go back to sleep this morning and slept for nearly three hours.

 

the reason this dr want's to test before increasing my dose higher than 3 pills divided over the day is to check iron and especially cortisol.  two things that are often masked by synthetic t4 (which I was on for 6 - 8 years) but are exposed by ndt.  wants to make sure they aren't part of the problem, and needing to be dealt with also.

 

I know there was a time my cortisol would have been seriously messed up.  I have felt a drop in underlying adrenalin levels. so, I do think we are making progress.

 

 

re: b12- Have you read that not everyone w/ MTHFR can tolerate methylated B(no matter the brand)? For people that have other mutations as well they need hydroxy B12, it is the only b12 safe for every mutation. I didn't know that until recently and just switched because I don't know my full genetic profile and some issues I was having could possibly be related.

 

I wouldn't take an adrenal support willy nilly because low cortisol and high cortisol can feel the same and you might end up taking something that does more harm than good. 

 

Sometimes you feel a bit hyper when upping meds but usually it will pass. I keep an eye on my bp and pulse- it might just be that your body needs to get used to it. It sounds like she has kept you on a starter dose too long btdt!!! I'm not an expert though. As I said it could be that your body can't convert or handle it due to iron, adrenals, etc. IIRC correctly the profile of your T4 raising but your T3 staying low fits the conversion problem but I'd recommend joining the FTPO STTM Thyroid Group and posting your labs. There is a lot to it, even more nuanced than the book or website. Fwiw b/c I'm on mostly T3 w/ a bit of NDT my T4 is low on the range but that is to be expected considering I take mostly T3 so my body doesn't have to convert it. My TSH is undectably too, with NDT your TSH will be suppressed until it is you aren't to optimal dosing. 

 

I'm homozygous for mthf.  when I started taking methylated b-complex (after having taken an average drug store brand for years) - I felt like someone flipped the switch ON.  I definitely benefit from them.

 

good to know about the sometimes feeling hyper.  I will give it a few days and see if it lasts or is temporary.  that's something of which I was not aware.  it would probably have saved me some misery if I had known.  it may or may not have been mentioned, and it just didn't register.

 

 

eta:  she told me to up the dose after two weeks after I started the NDT, but when I asked gave me permission to up the dose after 8days.  *I* dropped it back down when I started feeling hyper, thinking my body wasn't ready for that dose.  we haven't been doing this very long.

then I realized the pharmacy gave me nature-throid vs WP (which is what she'd ordered - and she specified the brand)

Edited June 11, 2016 by gardenmom5

[Soror]

1 grain equals about 65 mg

 

I stalled on increasing b/c I felt like I was going hyper and then got paranoid. I could have saved myself a lot of trouble if I would have pushed through- again though it is good to keep testing everything. Do you have a BP/Pulse monitor? They are very handy to keep an eye on your doseage. I've had my heart feel like it was racing many times but only once did I have an elevated pulse and that was due to adrenaline(I was nervous about running a 5k). 

 

If your ND is concerned about the iron and cortisol why not just test it. I've been testing my iron about every month along w/ thyroid numbers. Hoping to switch to every 3 months. I know on the group they often increase every 5-10 days until around 3 grains and then test. It seems it is common as well w/ cortisol issues to keep the NDT to 1-1.5 grains and then do the rest in T3-