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16428684 tn?1460085084

Am I on the right track with NDT?

Have had Hashimoto's for about 25 years and taking levothyroxine (125mcg). Unbeknownst to me, I had become hypothyroid 4 months ago with very high blood pressure causing a vein to occlude in my right eye (vision was spared).  The doctor's kept lowering my levo dose afraid of "osteoporosis".  This was the straw that broke the camel's back and I decided to take more charge of my health by switching to NDT (Armour) 9 weeks ago.  Have gradually increased dose to 3.5 grains and am keeping daily record of:
1.  average temps (gradually going up from 96's to 97.8 now),
2. blood pressure (coming down 135/85) and
3. symptoms (no longer need a nap, have a normal bm almost every day and mood is pretty good. But have worse cold intolerance and a return of Raynaud's phenomena in feet, hands and ears.

I will not have labs drawn for another 6 weeks, nor can I increase my dose until see NP at that time.  I should also say that my adrenals were not tested before starting NDT, but will be with a 24 hour saliva test soon that I ordered online.

My first 5 or so days on Armour---I felt like a million bucks.  Better than I can ever remember feeling- happy, energetic and warm.  

Every other day I question whether I am doing the right thing? My patience (and pocketbook) is running out waiting to feel good again.  Then I worry when reading people complaining that Armour potency has changed and isn't working as well, and,  then I panic and think should I switch to another brand? There's Levo still in my drawer and I have been very tempted to take a little bit each day to get my levels up!  

My main question is --Is it normal to go through this up and down process when getting to a proper dose of NDT?

Many thanks
and Happy Thanksgiving.
24 Responses
649848 tn?1534633700
COMMUNITY LEADER
We can best help you if you post your most recent thyroid hormone levels, with reference ranges, which vary from lab to lab and have to come from your own reports... It's hard for us to tell what's going on without seeing those.

It's not unusual for symptoms to worsen or for new ones to appear when changing doses or medications, until the body has had a chance to get used to the new medication/dosage and everything has stabilized.

16428684 tn?1460085084
Thank you Barb for responding.
Last Lab results from a month ago 10/27/15.  Had been on Armour for 31 days total, and at 2.0 grains for 16 days. My PCP was unable to test Free T3 due to insurance.  I am 61 yo, 5'7" and weigh ~155lbs. Retired from being an gerontology occupational therapist for 35 years. Walk 1-2 miles/day, gets lots of sun in NM.
Free T4:  0.8 ng/dL      (0.7-1.6)
Total T3:  102 ng/dL    (55-172)
TSH:   0.835 uIU/mL     (0.358-3.740)
Vitamin B12:  682 pg/mL  (193-986)
Ferritin:  200 ng/mL   (8-252)
Serum Folate:  29.1 ng/mL   (5.6-56.3)
D2 D3 total:  29 ng/mL     (>29)
My insurance for the new year will cover more.  I am now taking 3.0 grains Armour until I see naturopathic Nurse Practitioner 5 weeks from now. She has ordered the Free T3 and T4, TSH, TPO and serum cortisol to be drawn in 4 weeks.
Some days not sure I can make it that long.  Yesterday I tried one 100mg DHEA tab for the first time, and not sure if its related but had a few shooting pains in pelvic region, stabbing ear pains and throbbing thyroid.  Kept drinking homemade chicken broth and snuggled with hot water bottles.... better today but afraid of what's next.  Will not take anymore DHEA! Mood still OK, digestive system OK.
Many Thanks for listening.

649848 tn?1534633700
COMMUNITY LEADER
I can certainly see why you didn't feel well and have a pretty good idea why you still don't feel well, but that will be confirmed when you get your next blood work done.

The rule of thumb (where most of us feel best) is that FT4 be about mid range; your FT4 was only at 11% of its range.  Rule of thumb for FT3 is upper half to upper third of its range and your TT3 was only 40% of its range.  Considering that the majority of TT4 is bound by proteins and can't be used, we really have no idea what you had for Free (unbound) T3.  There's no doubt you needed the increase in med to 3 grains.  

It's not unusual for those on desiccated hormones to have lower than normal FT4 levels.  Having FT4 levels that are too low in the range can cause hypo symptoms, even when FT3 levels are adequate, which yours certainly weren't.

Add to that the fact that your vitamin D is way too low ("in range" isn't good enough)... Optimal vitamin D is approximately 60, so even though you're getting plenty of sun, your body isn't producing adequate vitamin D.  Actually, vitamin D is a hormone, not really a vitamin and as we age, like most hormones, production declines. I live in the "Sunshine State", and spend lots of time outside, but still have to supplement vitamin D.  Vitamin D3 is the type to take... It's safe to take 1000 to 2000 IU daily, with your levels, but discuss this with your doctor.

Additionally, your Ferritin is way high; you really need to have a full iron panel to determine if your iron levels are high or if there's something else going on.  Ferritin should, ideally, run about 70-80.  High levels of ferritin can indicate, either, too high iron levels or inflammation in the body.  Judging from the way you feel, I might guess it's from inflammation, possibly caused by thyroiditis.

FYI - a single serum cortisol is not very telling - it only tells what your cortisol level was at that moment and nothing else.  For best results, you need a 24 hr saliva test, but most doctors don't order that; you have to order it online.  We can give you sites from which to order it.

DHEA is one of the adrenal hormones and FYI - 100 mg is a huge dose.  I doubt if your symptoms were related to that dosage, but DHEA is a precursor to testosterone and high levels of testosterone can bring some very unwanted side effects, such as unwanted body hair, unnatural aggression, etc.  It's normal for DHEA levels to decline as we age, along with other hormone levels.  Levels should be tested and supplementation should be done under the supervision of your doctor in order to make sure it's balanced with other hormones, such as estrogen, progesterone, testosterone, etc.  
16428684 tn?1460085084
Wow- Thank you Barb for all this helpful info. It is so reassuring to check in with others between doctor visits, because the wait between labs/visits seem like an eon to me.  Today I am feeling so much better too.
--Yes I will ask for more testing of the iron-that may be a real key to my health!
--And I am ordering a 24 hour saliva test.
--And will only take DHEA under the supervision on my doc! Promise.
Since the last lab report, I have been supplementing D3 (2000iu x 2), Selenium (200mcg) and B complex.

Will post an update when there's more info.
I am so grateful for this site.
649848 tn?1534633700
COMMUNITY LEADER
Have you had B-12 tested?  Your B complex will contain B-12, but it may not be enough or it may not be absorbable, since many of us don't absorb it as well as we should or once did, since our absorption, often, declines as we age.  You should try to get that checked prior to supplementing with the B complex.

Selenium helps with the conversion of FT4 to FT3, but you don't have enough FT4 to convert, plus you're taking enough T3 in the desiccated hormones, that you wouldn't expect much conversion anyway...

Will look forward to your update.
16428684 tn?1460085084
UPDATE: Getting Better!!  
Barb-  yes I did have have B12 tested, it is below.
RECAP- Hashimoto's x 25 years. Always took just Levo until and they kept lowering dose (due to TSH?) and ended up very hypo 6 months ago (small stroke in eye and very depressed).  So I decided to learn more about this disease and what the options were. Asked my PCP to put me on Armour. It is now day #107 on Armour but discovered I need Levothyroxine too.  It has been a rolly coaster.  Got a bit hyper for the first time in my life and now I know hard to read my symptoms (for example: my purple and tingling toes and hip pain were from being hypo (not aging)).

LABS: July. Dose 112 Levothyroxine. Feeling Lousy and depressed. High Blood Pressure. Stroke in eye.
Free T4: 1.4     (0.7-1.6)
no Free T3 measured
TSH: 4.86      (0.358- 3.740) High

LABS. August. Dose 125 Levothyroxine. Feeling pretty good. Hadn't started my daily log of symptoms yet.
Free T4:  1.4 (0.7-1.6)
no Free T3 measured
TSH:  0.711      (0.358- 3.740)

LABS: October. Dose Armour increasing from 1 to 2.0  grains. Feeling very lousy.
BMI: 25.5 (overweight)
Average Temps: 97.4
Free T4:  0.8 ng/dL      (0.7-1.6)
no Free T3 measured
Total T3:  102 ng/dL    (55-172)
TSH:   0.835 uIU/mL     (0.358-3.740)
Vitamin B12:  682 pg/mL  (193-986)
Ferritin:  200 ng/mL   (8-252)
Serum Folate:  29.1 ng/mL   (5.6-56.3)
D2 D3 total:  29 ng/mL     (>29)  LOW

DOSING: per PCP instructions, gradually increased to 3.0 grains Armour and but was very hypo, crashed mid November.  I decided to start taking 125 Levothyroxine again and reduced Armour to 2 grains as my next appt. with naturopathic NP was still 7 weeks away (4 hour round trip, and she ordered labs for just before that appt)

Had 24 hr saliva test done during this crashing period. Cortisol all low but within normal limits except high at midnight:   2.1 (0.4-1.0).  I may repeat this once stable on the right dose.

LABS: December. Dose 125 Levothyroxine and 2 grains Armour. Feeling a little hyper with HR in 80s, 90s BUT  feeling really good!
BMI: 24.9 (normal weight) Improved, no dieting.
Average temps ~ 98.2 (Better)
Free T4:  1.9     (0.7-1.6)  HIGH
FreeT3:   6.0   (1.7-5.2)  HIGH
TSH:   29)  GETTING BETTER

Naturopathic NP reduced dosage to:
1 grain Armour and 117mcg Levothyroxine.  Been on this for a week, no longer feel hyper. A little constipation returned. Good mood. Temps have dropped to 97's again.  Time will tell.   Raynaud's that started when really hypo is almost gone. Concerned about high Ferritin level (329).  But I feel now like I better understand my body and Hashi's.  Hope to be able to now help my daughter who has Hashi's (27 yo) with lots of symptoms.

Really grateful for this board.  I have learned so much from others.

1 Comments
Just realized the my last TSH result should read  <0.007 (range 0.358-3.740) LOW.  And Antibodies TPO-Ab was 258.0 (range <35). HIGH.
649848 tn?1534633700
COMMUNITY LEADER
Just remember, not "all" symptoms are thyroid related... for instance, "a little constipation" could be due to something you ate, not your thyroid.  

High ferritin is often due to inflammation in the body.  It was recommended to me that I go on an "anti-inflammatory" diet... that would mean eliminating added sugar, most bread and other processed/boxed/packaged products.  I haven't eaten much sugar for a long time, but because I'd recently been diagnosed with pre-diabetes and metabolic syndrome, I stopped eating all but about one slice of bread/day on most days and cooked most things from scratch.  I added more healthy fats in the form of coconut and olive oils, avocados, nuts, seeds, etc...

After about 3 months, I'd lost 23 lbs and my ferritin level went from almost 300 to under 200; my A1c went from a pre-diabetic 5.8 to a healthy 5.3 and my cholesterol levels went back to the normal range.

I backslid from my diet over the holidays (since Thanksgiving); I've gained 6 lbs and my body feels like I've been beat up with a baseball bat... I haven't had ferritin, A1c or cholesterol levels retested, but I'm guessing they're all out of whack again... now I'm working to get back on my healthy diet.  

They say a healthy gut is the most important road to a healthy body and I'm beginning to believe that... I'm not talking about gluten and dairy free as many will advocate; I'm simply talking about a healthy diet that centers around vegetables, protein and healthy fats...
16428684 tn?1460085084
Thank you Barb for sharing your food experience with lowering ferritin.  My high level has me a bit worried, but I am hoping it is just the overindulgent holidays coupled with the short hyperthyroidism.  They will only test ferritin  every 3 mos. so I'll have time to get back to my regular diet (which is lots of fish, eggs, yogurt, berries, veggies, but too much bread!).  I have recently added coconut oil and will stock up on avacadoes.  It's funny, but with getting to better thyroid hormone levels I do not crave sugar as I did when hypo!  Your diet recommendations are a welcome reminder to better gut health. Oh, and I have been making homemade chicken broth that is so soothing.
649848 tn?1534633700
COMMUNITY LEADER
It's okay that you can only get ferritin tested every 3 months, as it will take time for it to come down anyway, if it's elevated because of inflammation in your body.

Homemade chicken broth is good for you, as long as you're simmering the bones for 10-12 hours to get all the "good" stuff out of them... that's called bone broth and is "supposed" to be very good for you... :-)
16428684 tn?1460085084
Would appreciate some feedback on latest lab results.

I am still trying to find that elusive "goldilocks" dose of thyroid meds. And am realizing that I do need a T3 med to feel better.  And better I am!  Have lost about 12 lbs. in past 4 months w/o dieting (probably mostly water?). Am in good spirits and am energetic.  Lingering symptoms include acne (mainly on chin), mild joint pain and dry eyes.

Latest February 2016 Labs:
112 Levothyroxine, 2 grains of NDT
Free T4:  1.6        (0.7 - 1.6)
FreeT3:   4.3        (1.7 - 5.2)
TSH:   <0.007      (.358 - 3.740)
Selenium: 154      (23 - 190)

December 2015 Labs:
125 Levothyroxine, 2 grains of NDT
Free T4:  1.9        (0.7-1.6)  HIGH
FreeT3:   6.0        (1.7-5.2)  HIGH
TSH:   <.007        (.358 - 3.740)

My questions now include:
How do my Free T's look to you?
My gut tells me I could use a little more T3 and a little less T4.
I am scared to death to go hypo again, and wonder if I might be a better candidate for synthetic T4 and T3 (versus NDT)?


16428684 tn?1460085084
Would appreciate some feedback on latest lab results.

I am still trying to find that elusive "goldilocks" dose of thyroid meds. And am realizing that I do need a T3 med to feel better.  And better I am!  Have lost about 12 lbs. in past 4 months w/o dieting (probably mostly water?). Am in good spirits and am energetic.  Lingering symptoms include acne (mainly on chin), mild joint pain and dry eyes.

Latest February 2016 Labs:
112 Levothyroxine, 2 grains of NDT
Free T4:  1.6        (0.7 - 1.6)
FreeT3:   4.3        (1.7 - 5.2)
TSH:   <0.007      (.358 - 3.740)
Selenium: 154      (23 - 190)

December 2015 Labs:
125 Levothyroxine, 2 grains of NDT
Free T4:  1.9        (0.7-1.6)  HIGH
FreeT3:   6.0        (1.7-5.2)  HIGH
TSH:   <.007        (.358 - 3.740)

My questions now include:
How do my Free T's look to you?
My gut tells me I could use a little more T3 and a little less T4.
I am scared to death to go hypo again, and wonder if I might be a better candidate for synthetic T4 and T3 (versus NDT)?


649848 tn?1534633700
COMMUNITY LEADER
For some reason, the site is all garbled this morning and it's very difficult to follow posts, as I'm sure you can agree.  If you can read this, I'll check back this afternoon in hopes that MH has things straightened out...

I do see that you've lost 12 lbs in 4 months... very unusual to have that much water weight and lose it over that period of time...will discuss that when I can read your entire post...
16428684 tn?1460085084
Looks like site is still garbled....check with you later
649848 tn?1534633700
COMMUNITY LEADER
MH is supposed to be working on this, but have no idea when they'll get it resolved...
16428684 tn?1460085084
Now that MH is working again....this is a repost of feb 18th post:
Would appreciate some feedback on latest lab results.

I am still trying to find that elusive "goldilocks" dose of thyroid meds. And am realizing that I do need a T3 med to feel better.  And better I am!  Have lost about 12 lbs. in past 4 months w/o dieting (probably mostly water?). Am in good spirits and am energetic.  Lingering symptoms include acne (mainly on chin), mild joint pain and dry eyes.

Latest February 2016 Labs:
112 Levothyroxine, 2 grains of NDT
Free T4:  1.6        (0.7 - 1.6)
FreeT3:   4.3        (1.7 - 5.2)
TSH:   <0.007      (.358 - 3.740)
Selenium: 154      (23 - 190)

December 2015 Labs:
125 Levothyroxine, 2 grains of NDT
Free T4:  1.9        (0.7-1.6)  HIGH
FreeT3:   6.0        (1.7-5.2)  HIGH
TSH:   <.007        (.358 - 3.740)

My questions now include:
How do my Free T's look to you?
My gut tells me I could use a little more T3 and a little less T4.
I am scared to death to go hypo again, and wonder if I might be a better candidate for synthetic T4 and T3 (versus NDT)?
649848 tn?1534633700
COMMUNITY LEADER
It wasn't necessary to re-post; as soon as MH cleared up, so did the previous post... :-)

At the 112 Levo and 2 grains desiccated, your FT4 is right at the top of the range, which is much higher than the recommended 50% for FT4.  Your FT3 is at 75%, which is the top quarter of the range... FT3 is recommended to be in the upper half to upper third... Yours is okay, as long it's not too high for you... I don't think you need any "more" T3.

The weight you lost 12 lbs in 4 month, without trying, was "not" water weight... when one is losing water weight, it will be a few pounds over night or a over a few days, not that much over several months.  You've lost weight, most likely because you're over medicated...

It's very possible that your acne, joint pain and dry eyes are not thyroid related.  I was getting some horrible looking "pimples" on my face about a year ago that I finally realized weren't really pimples, because they were filled with blood, not puss... upon research, I realized that they were a type of Rosacea and I got some stuff at the drug store called Prosacea to put on them and after several months, they cleared up, except when I spend too much time in the sun.   Also, when we get to a certain age, we tend to be more prone to muscle/joint aches/pains, so we can't always expect thyroid hormones to make them go away... I find that diet and exercise does more for my body pain.  Dry eyes is also, often, an age related issue and should be checked out by your optometrist.  There may be something else causing this.

Aside from that - we must ALWAYS keep in mind that too high thyroid levels can also cause some of the same/similar symptoms (body pain, especially) as not enough...

Some of us "are" better candidates for synthetic T4 and T3 than others because they can be adjusted individually, whereas desiccated is what it is.  

I might suggest that since you're feeling good, with only lingering symptoms, before you completely upset the apple cart by drastically changing meds, you talk to your doctor about simply dropping the levo to 100 mcg and leaving everything else the way it is, then retest in 6 weeks.  You're obviously converting "some" of the T4 to T3 and since your FT3 is at 75% of its range, which is higher than necessary, perhaps, you might find that sweet spot.  

We're all, always a bit afraid to sink back into that hypo world we came out of, but being over medicated is just as bad and can be harmful to our overall health, as well.  The goal is to find that happy medium and understand that not "every" symptom we have is always thyroid related and may not always be alleviated with thyroid hormones.  
16428684 tn?1460085084
Thank you Barb for the thoughtful response.

I do feel so much better than ever before, and the lingering symptoms, like you say may be unrelated to the thyroid!  I can certainly live with them!  The acne may be related to a new B complex supplement I took last week that has the methylated forms- it gave me diarrhea too, so I went back to the cyanocobalamin.  Will check the dry eye with eye doc next time.  Joint pain is minimal, will continue daily walks.

I see my NP tomorrow and will see what she says about lowering T4 to 100mcg.  I will also ask her if she will allow me the flexibility to up the NDT to 2.5 grains, because a little more T3 may be the sweet spot(?).

Hope the weight stays off. LOL

649848 tn?1534633700
COMMUNITY LEADER
It's possible the methylated B vitamins aren't for you, but those are, typically, the ones we recommend, because they're better absorbed.  Could be a filler/binder that doesn't agree with you.  

Magnesium often helps with joint/muscle pain; you might have those levels tested to be sure they're high enough, but magnesium won't hurt you anyway.  

One thing to be aware of, is that selenium is toxic if you get too much and your level is very near the top of the range; it may be too high for you.  You might try backing off on that, if you're supplementing.

Personally, I don't think you need any more T3 because your FT3 is already at 75%, which well into the upper third of its range... IMO, you're problem is that you're over medicated, not under medicated.  You should never make more than one change at a time, so if you lower your levo to 100 mcg, you should not make another change at the same time or you won't know which change works and which doesn't...

Once you make a change, you should give it a couple months or more for things to settle out before making any more changes, since you've been making then pretty regularly. You have to stop once in a while and let your body balance out.
16428684 tn?1460085084
Yes, I do not think the methylated B vitamins are for me (they are a high super dose too).  It's been about a week since I took the last one and the acne flare-up has definitely subsided.

Thanks for heads up on magnesium.  I will start again taking black strap molasses at night.  The previous NP I saw thought my high ferritin level might be caused by iron in the molasses, so I stopped that 8 weeks ago.  But I only take a tablespoon...so am going to take it again.

I agree totally about letting the body rest!!!   I forgot to mention, due an insurance change---the pharmacy changed me from Armour to NP Thyroid about 20 days ago.  It makes sense to stay on this regimen for a while longer before more labs.  And then see where the Free's are and how I feel.

Will keep the forum/you posted.
649848 tn?1534633700
COMMUNITY LEADER
Yes, your high ferritin could have been from the iron in the molasses or from inflammation; best not to push the molasses until you know your ferritin has come down... it might be best to get your magnesium from another source.  There are some excellent supplements you can buy or you can get magnesium from spinach, collard greens, kale, swiss chard; nuts and seeds high in magnesium include almonds, sunflower seeds, Brazil nuts, cashews, pine nuts, flaxseed, and pecans; fish like mackerel, wild salmon, halibut, and tuna.  Bananas are also good sources.  The dark greens are the best sources.

1 Comments
Hallelujah- Finally have found right dosages after this journey started 12 months ago!

I am now symptom free with good energy & good mood.  It turns out I am one of the few whose optimal levels is in the very top of the range. I discovered this by slowing increasing dosages for the last 4 months until symptoms disappeared.

Current labs with being on 137mcg generic Levo and 2 grains NP Thyroid for 6 weeks:
Free T3 (5.0) 1.7-5.2
Free T4 (2.0) 0.7-1.6
TSH  <.0007
Vitamin D  (43)

I have no symptoms of being hyper and my weight is stable at ~ 8  pounds over ideal weight. I did not take meds prior to draw.  My NP said as long as I feel good to keep the same dosage or reduce the Levo slightly.

Just a note to people: Six months ago, my insurance changed me from Armour to NP Thyroid.  I found that the NP Thyroid is 20-30% weaker (for me) than Armour.

Thanks to MH folks, I have my health back.
Avatar universal
Great news.  Thanks for the feedback.  
649848 tn?1534633700
COMMUNITY LEADER
That's great news... since your levels are so near to the top of the range and/or over range, do watch symptoms very carefully, as you can tip into the over medicated area very quickly.  As long as that doesn't happen, I'd agree with your NP... stay the course.  

Please keep us posted on your long range progress.
1 Comments
I will keep MH community updated.  The primary reason I will do this, is because it helped me SO MUCH to read through others' threads on what worked for them.  

Forgot to mention that I have been "educating" my NP by giving her an 18 page handout of articles from peer reviewed literature that dispels myths about TSH levels, bone loss from thyroid hormone, etc.  I am happy to share that with others in a pdf. but don't know how to do it without people's emails (which we do not share here).

My NP  has been very open to getting me to feel better but was still worried a bit about the TSH being so low. And my pharmacist had given her blowback about me being on Levo and Np Thyroid!!  

The NP was worried about boneloss despite the literature, so she had me do a bone scan which showed I have very strong bones.

SO---I also wrote my NP a letter and read it to her aloud on last visit.  It stated I feel best when my Thyroid hormones are at the top of the ranges, and, that it stands to reason my TSH will be suppressed, but that this does not concern me.   And that if I do not hold her responsible if I get bone loss or anything else.

Avatar universal
It would be nice to find a doctor who is knowledgeable enough to give us all these answers. I finally decided to change my doctor after many years because my old doctor did not want to do anything and resented me asking and questioning, quite frankly. I do not know what the hesitancy is in combining T4 and T3. My sister lives in Houston and a doctor there has done this for her and she feels significantly better. She had a conversion problem--Synthroid is T4--which needs to be converted to T3--the form the body uses. I learned some medicines, lack of zinc/selenium, GI problems like leaky gut syndrome, candida, liver problems, high cortisol levels, etc...can cause problems in converting T4 to T3. I asked my former doctor about this and he looked at me like I thought I was a doctor and maybe I wanted to do his job for him. I am just trying to feel better. Silly me, I thought that helping me feel better was supposed to have been his goal, too. I changed doctors and though she is hesitant, she actually ordered a thyroid scan for me and is rechecking the original diagnosis, to be sure. She has placed me on Hyzaar because my blood pressure has been creeping up. My vision is fuzzy and I have been having significant muscle/joint pains. I worry about osteoporosis--my present dosage is 125mcg. I think they keep upping it because I am not converting Synthroid properly. I am worried the higher dose can cause cardiac symptoms without giving me any benefit. I sympathize with you, wondering about whether the right or best things are being done, especially for long-term health and eyesight.
Avatar universal
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