Thyroid experts: I need some help!

[countrygal]

This is going to be long. I am in need of advice and encouragement. I have had hashi's for 8 years and I'm in my early 30s now. I have had several babies over these last few years and the hormonal adjustment afterwards is awful. I have always been on levothyroxine and it seems easy to adjust while pregnant but afterwards I get 'overmedicated' fast, despite dropping my dose down immediately. My baby is six months old now and I have had my blood drawn for tsh 4 times since: 0.4, 0.53, 0.4 (Free t4 1.7, free t3 2.5), and 0.49 again a few weeks ago. Each time we adjusted the dose a little lower but it really hasn't changed how I feel or my tsh. My free t3 and t4 were drawn per my request but I didn't push my luck with an rt3. It wouldn't have mattered because the endocrinologist didn't even look at the ones I had drawn other than saying they are 'normal.' I said I don't feel well at all when my tsh is below 1 and he said we'll try to get it up by decreasing your dose. He is a nice doctor (endocrinologist) and listens, yet I don't think he understands. He does say some people feel better at the lower end of the scale and some better at the higher end and is willing to work with me to achieve that, however, he thinks I may have other issues (but I know these are all thyroid related), so now I doubt how much he is willing to work with me.

After doing some research I realized that my free t4 is high (their lab cut-off is 1.7) and free t3 is low. Some days I can't figure out if I'm overmedicated or under medicated - I think I'm BOTH. Can someone explain or verify this?? I have symptoms of both. I go from insomnia and sweats to feeling like ice and dreading having to even walk up stairs, even in the same day. When I am overmedicated on t4 (levothyroxine) I can't sleep or think and my muscles are weak and burny (usually not in a painful way, but now they are getting that way.) This past summer though I have had some scary moments - waking up with my body being numb or sore, nightmares and night sweats, unable to think clearly, and very irritable, and startling at the slightest noise. Each day is difficult to force myself to do things physically. My muscles all feel tight or twitchy. I decreased my dose myself this last time when they call with my 'normal' result (they obviously didn't remember me or look at my previous result which was THE SAME.) Fortunately I am able to sleep now, but I know my dose is not enough at the same time. It's the lowest its ever been. I know my adrenal function is swinging all over the place now as well, which I'm sure is some of these symptoms. I don't know what direction to take anymore. I know my t4 intake was too high (likely to lack of any hormones PP causing me to need less) but because I didn't decrease it fast enough over these months I think I may have developed a lot of rt3 to compensate. (Dr. Rind website stated that I high ft4 and lower ft3 indicates that it's likely a lot of rt3 as the body is trying to rid the extra t4.) I have thought and asked about ndt but now I'm TERRIFIED to try it because I know my adrenals are stressed. I don't even know if a saliva test would be accurate to check my adrenals because I think it changes from hour to hour, day to day, none being the same. At the same time, I feel like it's the only way to get free t3 in me because my body can't seem do it now, for whatever reason. I feel that my adrenals would even out if my thyroid was regulated properly, though. My endo. did say he will prescribe armor if a patient really wants it (he said he doesn't like to, though) BUT I am already feeling overmedicated it would likely make me feel worse and I agreed. I'm too scared to try. I HATE being hyper more than hypo (probably my adrenals can't take it.) I don't want to take any adrenal support herbs because of breastfeeding and my body is sensitive to everything. I have been gluten free for two and a half years as well. I considered using progesterone cream to support my adrenals (and decrease my milk supply which was WAY too high, but improving now) because I have not had any cycles yet. I'm sure I'm sucked dry (literally) in the female hormone department as well. That's why I though the cream might help.

Well, there it is Thyroid Experts. Please fill my in on what I am missing here and what I should do. Can anyone tell me why I should try NDT? I'm scared it would make me feel worse (I'd rather sleep that be an insomniac), but I don't think I can stand another 6 months of t4 only adjustment. The only way I can see staying on it is taking a very decreased dose until I'm hypo and working up slowly so my body can rid of the rt3 and 'start over' making real ft3. (That sounds insane as I type it...) I think that would take a minimum of 6 months from where I am at to feel remotely normal. I feel like I'm being robbed of my life. I have felt normal on levothyroxine in the past... distant past... probably right before I got pregnant this last time (pregnancy had it's own wonderful issues.) I have blamed my 'not feeling well' with my pregnancy and post partum adjustments in medication. It doesn't seem to affect my fertility though... haha. My children are all normal and healthy, thankfully. This shouldn't take a year each time, right?? Is there a better way? I can't seem to find anyone (even online) who has had this happen postpartum. Has anyone been on ndt while pregnant and breastfeeding and have any advice or experiences to share?

Also, what dose should I start and how often should it be increased? How often should labs be drawn and what kind of labs for NDT dose adjustments? I want to find a doctor who knows this but I want to know if what he says is what I agree with as well. I can't seem to find a doctor that understands, but I'm going to try. I don't know if I want to go back to this endocrinologist. If he doesn't understand how to read labs, how can I trust him to accurately adjust ndt? I'm tired of trying to figure this out for myself. I REALLY want prepared for when I see another doctor. I will likely order my own labs at a separate lab site (all the recommended by STTM) and bring them. I may travel to a larger city since my small one doesn't have any functional or intergrative physicians that I can find.

 

One more thing: He drew my parathyroid hormone and mailed the results to me which he said was "normal", however they were 1 point "low" at 13. I asked about it because my most bothersome symptom (first to come and last to leave) is muscle weakness/lack of stamina. I had kidney stones and apparently my kidneys do excrete 'slightly' more calcium than they should according to a 24 hr urine test but the urologist didn't elaborate on what that meant and didn't seem concerned. My endocrinologist didn't seem to think that was related to my hypothyroidism at all and doesn't seem concerned with my parathyroid lab test. My blood calcium and magnesium levels were normal, magnesium on the high end though. Anyone have any insight into that??

 

Thanks for any and all help. Sorry if it seems all over the place, my brain is obviously not working well.

[Hyacinth]

Bumping for you. Hopefully Ellie or another thyroid expert is around today.

[PeterPan]

Some of the NDT med manufacturers have lists of doctors who use/prescribe them.  Sometimes the lists aren't accurate, so you still need to call each one and actually ask.  However that would be one way to move forward with finding a new doc.  Obviously you'll need to continue with your current doc until you find a new one.  

 

You're concerned about your adrenals, but you have plenty of milk, which is a really good sign!  Usually women with adrenal problems have the opposite happen, with low milk supply and extreme fatigue from the nursing.  No, I personally would not encourage you to do the progesterone cream.

 

When I took thyroid meds, I only took NDT.  To me, it's the levothyroxine that is illogical and needs an answer for why.

 

Are you taking magnesium?  

[countrygal]

Thanks for the bump :)
 
I guess I'm just scared to try ndt because I am having a hard time deciphering my symptoms. I can't tell anymore whether it's likely thyroid or adrenal and I'm afraid that starting ndt in the midst of this postpartum limbo will be a bad idea. So I keep waiting to feel better... and I keep feeling worse. I wish I had a doctor who understands :( I'm just wondering if anyone can see my thought process (where I'm coming from) amidst all my previous ramblings about being overmedicated yet under medicated at the same time.

 

Dr. Rind from his website: 

 

​"* RT3: Reflects the level of Reverse T3. I used to measure this often but found little need for it once I realized the approximate value can be estimated from knowing T4 and T3 values since we know that T4 will become either T3 or RT3. For example, if the T4 is elevated and the T3 is low, we know that RT3 (what the rest of the T4 becomes) will be relatively elevated."
 
Here are my lab results compared to a chart on Dr. Rind website:

Test         Lab Low        optimal            lab high                my result
 

tsh              0.5            1.3-1.8              5.0                       0.4

 

free t4        0.8             1.2-1.3             1.8                        1.7

 

free t3        2.3               3.2-3.3            4.2                        2.5

 

 

*edited because I hit the post button too soon. oops.

Edited October 29, 2016 by countrygal

[countrygal]

Oh, I forgot to respond about the magnesium. I do take usually 200mg Mag citrate (NOW brand) before bed. A friend recommended that (she's really into supplements and is a vet so I think she's credible!) because of my muscle cramps and weakness. The cramps were only during pregnancy and it helped then. I don't think it has helped the weakness. Now I take it to balance out calcium to hopefully prevent kidney stones. I think those were largely due to too many tums, dairy and I calcium well water at the time!

[countrygal]

Can you afford to go to a doc that doesn't take insurance?  Mine charges $300 for the first visit and $150 for subsequent hour long appointments.  He works with me on adrenals and thyroid.  There are Facebook groups for NDT that can help you find a good doc in your area.  For Thyroid Patients Only is a great group. 

 

Thanks for the suggestions! I never thought of facebook. I'll try that. I'm not having any luck with any links on STTM or hypothyroid mom or google. We are kinda rural... I did just find a doctor online less than an hour drive away that is only $100 for an appointment. She is a family practitioner and holistic MD so I may try her!

[gardenmom5]

armour isn't as good as it used to be.  i  linked to the sttm page on different thyroid rx.  they changed the formulation several years back, and many people who had been happy on it switched to something else.

there is also naturthroid or WP thyroid (has far fewer fillers.)   My  pharmacy gave me naturthroid instead of wp, and my body is complaining. (at least I think that's what's been going on for the last week.)

 

levo is *only* t4.  that's a storage hormone.  it is supposed to convert to t3 -  which is the form actually used.  some people do not convert very well.

have you ever had your reverse t3 checked?

the other huge drawback with t4 only - it's very very hard on your adrenals.

have you ever read 'stopthethyroidmadness'?  or been on their website?  I would strongly urge you to do that.

 

they have a whole page on hashi's  there is also a facebook  group ftpo.   you can ask questions, and people who are far more experienced with this can answer questions in more depth.   - bouncing from hyper to hypo is common in hashi's.

my understanding with hashi's also is diet is very important.  here's the rec'd labwork for hashis, and the site also explains how everything fits together.

 

you will find the sttm site will change your life as a thyroid patient.  it's not laid out super well, but you can search and there are links.  the groups are also helpful.  I'm on the regular thyroid site as well as one for adrenals.

don't rely upon your dr for information - you have to educate yourself first so you can get the treatment your body wants.

 

eta: sttm/and their fb groups are really good about helping find drs in different areas who are more willing to use their protocols

Edited October 29, 2016 by gardenmom5

[gardenmom5]

Oh, I forgot to respond about the magnesium. I do take usually 200mg Mag citrate (NOW brand) before bed. A friend recommended that (she's really into supplements and is a vet so I think she's credible!) because of my muscle cramps and weakness. The cramps were only during pregnancy and it helped then. I don't think it has helped the weakness. Now I take it to balance out calcium to hopefully prevent kidney stones. I think those were largely due to too many tums, dairy and I calcium well water at the time!

 

I've been taken dudeling to a ND for several years.  I learned about brands.  NOW is a reliable brand. (I order from amazon because I can more easily find exactly what I want. and I'm in a city.)  I also use their mag.  be sure and take minerals well away (4 hours?) from thyroid meds.  they can bind together.

[countrygal]

Thanks for the replies. I was able to contact a that doctor who isn't holistic but is an integrative physician and she says she does do all the thyroid tests and has prescribed nature-throid/WP thyroid. I would prefer those over armour anyway because of what I have read. I have an appointment tomorrow! I have prepared my paperwork to take with me. Wish me luck. I want to feel like a functioning human again :(

 

I have not had my Rt3 checked but this doctor will order it along with the free levels of t3 and t4.

 

I was not aware that T4 only was hard on adrenals! I really think getting the right dose of NDT will help even out issues I have there. I've tried long enough to take the best vitamins, remove offending foods and sugars and it's not enough.

 

Still curious if Ellie has any additional advice....

[Soror]

gardenmom is spot on- you need to go to the FTPO groups, those are the real experts.

 

Your thought of lowering dosage until the RT3 clears is actually how it is done. I got really high RT3 myself this spring and had horrible muscle weakness- it felt like i was going through mud. I finally dropped my NDT by half until I felt better then started feeling hypo at which point i started replacing it with T3. As it is now I'm on strictly T3 and am starting to feel really good again. I had felt good on an NDT+ T3 combo but it seems i have conversion issues so I tend to build up RT3. They also say with someone with adrenal issues conversion is often a problem. My adrenals aren't horrible but they aren't optimal either.

 

Saliva is the test for cortisol. I need to redo mine but funds are low now. i can't remember where i found the rec. for the Dr. I use, well actually i use the NP in a Func. Med practice. She isn't perfect but she is very amiable to listening to me and how i feel and adjusting my dosage as necessary.

 

it is common for the thyroid to whack out with pregnancy. With Hashimotos (which you likely have as do 90% do) going up and down is also not unusual.

Edited November 1, 2016 by soror

[Soror]

Thanks for the replies. I was able to contact a that doctor who isn't holistic but is an integrative physician and she says she does do all the thyroid tests and has prescribed nature-throid/WP thyroid. I would prefer those over armour anyway because of what I have read. I have an appointment tomorrow! I have prepared my paperwork to take with me. Wish me luck. I want to feel like a functioning human again :(

 

I have not had my Rt3 checked but this doctor will order it along with the free levels of t3 and t4.

 

I was not aware that T4 only was hard on adrenals! I really think getting the right dose of NDT will help even out issues I have there. I've tried long enough to take the best vitamins, remove offending foods and sugars and it's not enough.

 

Still curious if Ellie has any additional advice....

Good luck with your appt, make sure you get copies of all your labs and post them on the group too, those dr's are usually better with thyroid & hormone issues as they will actually test everything but they don't always get dosing 100% right. Often they do increases way to slow. I went through that myself but i was part of the problem too as when first starting T3 it often causes headaches and it made me nervous. I wish I had pushed through earlier. i was just scared of going up in meds so it took a while to be feeling well. And then, as i said i tend to have conversion issues and I would start feeling bad and not go in to get labs checked but just kept hoping it gets better. i finally learned to get my labs done as soon as i feel off and start working to head it off then. i've also noticed i have a pattern of feeling bad in the fall, it seems that is not uncommon as many find they need less meds in the Summer. i had a small crash after pneumonia- at first i went HYPER so I cut meds but then i swung to HYPO but I got my blood tests done and adjusted my meds ad it was only a little while before i was feeling better again. So, don't be unnerved if he wants frequent visits at first, it takes a bit to adjust. At the beginning i wouldn't go longer than 6 wks, 3 mo is too long on a starter dose (generally 1 grain/65 mg NDT)>

 

(excuse typos I'm having keyboard issues)

Edited November 1, 2016 by soror

[Ellie]

Thanks for the bump :)

 

I guess I'm just scared to try ndt because I am having a hard time deciphering my symptoms. I can't tell anymore whether it's likely thyroid or adrenal and I'm afraid that starting ndt in the midst of this postpartum limbo will be a bad idea. So I keep waiting to feel better... and I keep feeling worse. I wish I had a doctor who understands :( I'm just wondering if anyone can see my thought process (where I'm coming from) amidst all my previous ramblings about being overmedicated yet under medicated at the same time.

 

Dr. Rind from his website: 

 

​"* RT3: Reflects the level of Reverse T3. I used to measure this often but found little need for it once I realized the approximate value can be estimated from knowing T4 and T3 values since we know that T4 will become either T3 or RT3. For example, if the T4 is elevated and the T3 is low, we know that RT3 (what the rest of the T4 becomes) will be relatively elevated."

 

Here are my lab results compared to a chart on Dr. Rind website:

 

Test         Lab Low        optimal            lab high                my result

 

tsh              0.5            1.3-1.8              5.0                       0.4

 

free t4        0.8             1.2-1.3             1.8                        1.7

 

free t3        2.3               3.2-3.3            4.2                        2.5

 

 

*edited because I hit the post button too soon. oops.

 

Well, I'm a little perplexed by the "optimal" numbers, as in all cases the upper end of should be the lab high, if you see what I mean. Free T3 should be in the upper fourth of the lab's ranges, Free T4 in the upper half, TSH in the lower fourth. Your Free T3 is definitely hypo; I cannot do the math to figure out your FT4, but I think it's optimal.

 

You're probably going to have to pay for the 24-hour saliva test (adrenals), but it's an important test.

 

Perhaps your doctor can prescribe a low dose of NDT, maybe half a grain (a grain is 60-65mg, depending on the brand), and see how you feel.

[Ellie]

 

Also, what dose should I start and how often should it be increased? How often should labs be drawn and what kind of labs for NDT dose adjustments? I want to find a doctor who knows this but I want to know if what he says is what I agree with as well. I can't seem to find a doctor that understands, but I'm going to try. I don't know if I want to go back to this endocrinologist. If he doesn't understand how to read labs, how can I trust him to accurately adjust ndt? I'm tired of trying to figure this out for myself. I REALLY want prepared for when I see another doctor. I will likely order my own labs at a separate lab site (all the recommended by STTM) and bring them. I may travel to a larger city since my small one doesn't have any functional or intergrative physicians that I can find.

 

One more thing: He drew my parathyroid hormone and mailed the results to me which he said was "normal", however they were 1 point "low" at 13. I asked about it because my most bothersome symptom (first to come and last to leave) is muscle weakness/lack of stamina. I had kidney stones and apparently my kidneys do excrete 'slightly' more calcium than they should according to a 24 hr urine test but the urologist didn't elaborate on what that meant and didn't seem concerned. My endocrinologist didn't seem to think that was related to my hypothyroidism at all and doesn't seem concerned with my parathyroid lab test. My blood calcium and magnesium levels were normal, magnesium on the high end though. Anyone have any insight into that??

 

Thanks for any and all help. Sorry if it seems all over the place, my brain is obviously not working well.

 

Ok, I read your post more carefully. :-)

 

I'd try to find a new endo. Seriously.

 

The recommendation for starting NDT is to begin with one grain (60mg or 65 mg, depending on the brand) and increase by half a grain every 10 days to two weeks until you feel better; hold that dose for 4-6 weeks and *then* test  IOW, you increase according to your symptoms, not according to lab work. Many, many doctors will leave their patients on the same too-low dose for several weeks before increasing, and that's deadly. :-(

 

Never accept the doctor's assertion that lab work is "normal." I was undermedicated for 20 years because my labs were always "normal." :cursing: Thank goodness I found the Stop the Thyroid Madness site and the Hashimoto's 101 Facebook page.

 

Also, you said that you have been gluten-free; you might need to do the Autoimmune Protocol (AIP) for awhile, which will eliminate all grains--not just gluten--dairy, beans/legumes, nuts/seeds, eggs, and nightshades.

[countrygal]

I haven't checked back! Sorry.

 

She was a really nice doctor and seemed really knowledgable. I showed her my labs and she said "You definately need t3 support." She claimed that when she sees the free t4 go over 1.4 that there is too much rFT3. Factoring that in with my too low FT3 I'm hypo. She would like to see the ft3 up to 3.5 at least. She said we can do whatever I want - ndt or adding cytomel to the levothyroxine. She even knows people don't prefer the armour as much after the reformulation. So I went with Nature throid only 1/2 grain. She thought that was too low but I wanted to start low. I've normally been on 75 mcg of levo though. She said take it for a week or two and if you feel like you need more split a pill in half and take 3/4 grain. We're going to check levels of everything after 6 weeks. She gave me her email and told me to email her in a week with an update of how I feel. I like her :) :) She told me to keep taking iron, selenium, and zinc and if I still don't feel well when the levels look ok we'll look into iron or vitamin issues then.

 

Thanks for your help and support. I sure hope this works. I was feeling pretty hopeless :( I want to be me again.

[Ellie]

I haven't checked back! Sorry.

 

She was a really nice doctor and seemed really knowledgable. I showed her my labs and she said "You definately need t3 support." She claimed that when she sees the free t4 go over 1.4 that there is too much rFT3. Factoring that in with my too low FT3 I'm hypo. She would like to see the ft3 up to 3.5 at least. She said we can do whatever I want - ndt or adding cytomel to the levothyroxine. She even knows people don't prefer the armour as much after the reformulation. So I went with Nature throid only 1/2 grain. She thought that was too low but I wanted to start low. I've normally been on 75 mcg of levo though. She said take it for a week or two and if you feel like you need more split a pill in half and take 3/4 grain. We're going to check levels of everything after 6 weeks. She gave me her email and told me to email her in a week with an update of how I feel. I like her :) :) She told me to keep taking iron, selenium, and zinc and if I still don't feel well when the levels look ok we'll look into iron or vitamin issues then.

 

Thanks for your help and support. I sure hope this works. I was feeling pretty hopeless :( I want to be me again.

 

Sounds like a good start. :-)

 

You know that you should be increasing your NatureThroid by half a grain every 10 days to two weeks until you are symptom free, right? Truly, truly, you need to do that. Staying on a starting dose for longer than that causes you to actually lose ground. And a starting dose is one grain, so it will be even more important for you to increase on that schedule.

[Soror]

http://www.stopthethyroidmadness.com/reverse-t3/

 

Adding in and increasing NDT is the exact opposite of STTM's rec for high RT3. Switching to NDT is better than synthetic but T3 is what you really need. If you go on the FB Ftpo group you can post your labs and they will give specific recs. The mods are from STTM or trained by them.

Edited November 5, 2016 by soror