New and just switched from NDT to Levo

[lcsnow21]

I'll try to make this as short as possible. I live in the U.S. and have not been able to find support on any other site.

-I've struggled with my energy level for as long as I can remember. When I was a teenager I became anemic due to heavy periods and was put on birth control and iron supplements. I remained on the pill until about 6 or 7 years ago. I was working for a holistic clinic and wanted to "cleanse" from the pill.

-I continued to have bouts of depression but this had been a problem for many years. A lot of the time it was situational but I had a low threshold for high stress and tried antidepressants a couple times.

-I finally started seeing a regular doctor about 5 years ago. She told me my blood labs looked fine and gave me antidepressants again. I was going through a tremendous amount of stress. Job stress, death in the family, mentally ill family member, financial stress, relationship stress.

-I left my job after basically becoming non functional and got off the antidepressants. I thought after having left that terrible job I wouldn't need them anymore.

-Still struggling with energy so I changed to a new doctor. She did more labs. I had begun losing hair so I asked about my thyroid. They basically thought I was crazy and sent me home to do a sleep study even though I assured them I sleep great. In fact that was my favorite part of the day!

-I noticed my WBC were low (3.3) so I called the nurse. She told me I could go to a hematologist if I wanted to. I had to ASK about this. They had told me my labs were all normal. I made an appt with the hematologist and also noticed my ferritin was 13 so I asked her about it when I got there. She told me I needed iron supplements for sure and this could be life changing if I get my ferritin up. I never went for a follow up because my insurance didn't cover the appt so I decided to switch to a new general doctor at a more integrative type clinic. I was pretty mad the other place didn't catch my ferritin being that low. It did help to get my iron levels up but I still struggle to keep them up because I have very heavy periods. My hair stopped falling out and I felt better but not 100%.

-New clinic tells me my B12 is a little low (315), my D is a little low (35), and my thyroid is sluggish. Unfortunately I don't have access to any of my thyroid labs right now but I know my TSH was around 2.7, my T3 was around 2.5, T4 around 1 ish. These levels have been pretty consistent. Sometimes my TSH gets a little lower. So they advised me about supplements and gave me naturethroid (1/4 grain). The naturethroid was WAY too stimulating. I had heart palps, racing pulse, crazy euphoria type feelings after a couple weeks. I stopped taking it completely and wondered if I should ever go back to that place again. I did some research and decided to give them another shot. I was still working on my iron, B12, and D at this point.

-I go back and the previous nurse is gone and the new nurse tells me to take high doses of vitamin C and ashwaghanda to support my adrenals. Plus continue with supplements. She says I probably dont need the NDT. So I do this for like 9 months. Then I decide I want to get pregnant. I had started to accept my energy level was never going to be great and I was getting older. I could get myself going on coffee and adrenaline when I needed to. I quit the ashwaghanda bc I was afraid to take herbals while TTC. I had withdrawal symptoms as if I had taken xanax for the last 9 months. But I got through it. I went to a dietitian because I had started to gain weight and couldn't lose it. She put me on a pretty low calorie diet and I crashed and burned and piled on more weight.

-I go back for a follow up. Still struggling with my energy. This previous nurse is gone AGAIN so I'm on a third nurse. She tells me my thyroid still isn't great. At this point my TSH is at a 3.05. She offered NDT and I told her I was afraid bc of what happened last time. She said to take iodine, selenium, and zinc. The amount of iodine she recommended was extremely high and I had not been tested for a deficiency so I didn't do what she said but I did buy a thyroid supplement containing all 3 nutrients in more reasonable amounts. I did this for 6 months and it did nothing for my levels. My weight is still stuck. I have also been to a fertility doctor who makes no mention of my thyroid and performs laparoscopic surgery on me. He finds a couple polyps and a teeny tiny bit of endometriosis but nothing significant. My hormones are pretty good and my husbands sperm is completely normal. I'm coming up on 2 years TTC.

-I go back and she gives me WP thyroid and tells me to take a half of a 1/4 grain every other day and slowly build up to a whole pill everyday over time. I tried to do it and was ok at first but then started getting that shortness of breath, beating heart, anxious, way too stimulated like I'm high on something feeling. I email her and tell her and she tells me to lower my dose and "are you doing anything to support your adrenals?" so at this point I feel like I'm going in circles. After 6 weeks on the NDT my labs are the worst they have ever been?!?! what the heck? My TSH is 3.9 and my T3 and T4 have gone down a little. Makes no sense. I ask her to refer me to an Endocrinologist. I'm really worried this is all dangerous for my ability to get pregnant.

-I like this endocrinologist. He is not against NDT at all for certain people. But he says in my case I am too sensitive to the T3 in the NDT. He gives me levothyroxine and tells me to get off the NDT right away. He says he prefers to use levo for women TTC and for infertility my TSH needs to be below 2. Well for 2 years nobody else has said this. Maddening.

-So I quit the NDT and went straight to 25mcg of levo a week ago. The first couple of days I felt great bc the T3 feeling had gone away but the NDT was kind of still in my system. Then BAM. I feel horrible. No energy, depressed, shedding hair, bloating, gained a couple pounds, craving sweets bc of my energy. Yesterday I started feeling a bit better and thought ok the meds are finally kicking in but today I'm back to feeling very hypothyroid.

So there's my looooooooooong story!! I'm just looking for some insight, support, and wondering if I just need to be patient with the levo. I know it can take time to build up and I may have to adjust my dose. My next follow up is in 2 months.

[fibrolinda]

It does take time and you are only on a low starter dose, you should get bloods tested 6-8 weeks after starting and increase by another 25 and so on till on your 'right' dose. You've had one heck of a time ((hugs)) I am far from an expert.... very far.... but you need b12 to be up to 800-900, Ferritin above 70 and vitamin d 100-150 for thyroid function.

when you get your bloods done it would be great if you could get

TSH

FT4

FT3

Tpaob and tgab thyroid antibodies

B12

Folate

Ferritin

Vitamin d

Tested and post the results on here, with ranges, usually in brackets after result

Then you can get better advice when what is happening to you can be seen clearer.... I hope that makes sense, apologies my brain is 'hiccuping' somewhat this evening but didn't want you to think you were being ignored. Posts can slip through sometimes and a repost can get better response.

linda x

[lcsnow21 in reply to fibrolinda]

Linda,

Your kindness means the world to me! I got your message when I was feeling rather down and it really made my day. Thank you! It's been quite a journey. The end goal is to have a baby and have the energy to care for a little one!

I'm having good days and bad days so far... sometimes good hours and bad hours. It's such a weird feeling. I have a follow up appointment on Dec 14th and I will get labs done at that time to see how I've done on the 25mcg dose. One of the things that makes this difficult are all the people saying synthetic T4 medications are made by Satan himself and how you are destined to be fat and miserable if you don't take something with T3. I feel like I've already been down that road and it didn't work for me.

Anyway here are the most recent labs I have:

Vit D - 39 (30-100)

Ferritin - 25 (13-200)

Folate - 14 (>=6.0)

B12 - 472 (200-950)

THYROID PEROXIDASE AB - 2 (<9)

THYROGLOBULIN AB - <1 (<4)

BEFORE NDT:

TSH - 3.05 (.400-4.100)

FREE T4 - 1.21 (0.80-1.90)

FREE T3 - 2.5 (2.2-4.2)

AFTER 1 Month NDT (Half of a 1/4 grain every other day)

TSH - 2.72 (.400-4.100)

T4 - 1.19 (0.80-1.90)

T3 - 2.8 (2.2-4.2)

AFTER 2nd Month NDT (Half of a 1/4 grain everyday) - started feeling over medicated

TSH - 3.82 (0.400-4.100)

T4 - 1.07 (0.80-1.90)

T3 - 2.6 (2.2-4.2)

I was shocked to see my labs get WORSE on a higher dose of medication. This was the worse they've ever been. I know my ferritin is way too low. I struggle with it SO much. It seems like every time I have a period I have to start over again

[fibrolinda in reply to lcsnow21]

Levo works for most I believe but they're off living their lives and aren't on forums like this I take NDT and could not increase until I started taking Holy Basil to support my adrenal, works for me.

SeasideSusie is The Best at anything to do with vitamins and minerals and hopefully will advise, I know she says eating liver once? A week Is a good way to increase iron. I am so sorry I'm either brain fuzzed or in an almighty rush, hopefully others will be along... they're a friendly and very helpful bunch I promise.

X Linda

[phoenix23002]

Where to start.... It is a fact that it can be difficult if not impossible to optimize your thyroid dosage if your D 3, B 12, iron and adrenals are not optimal. I get a sense that your adrenals are crashing every time you try to address your thyroid condition. Adding thyroid meds to the mix is like putting high octane gas in an old clunker of a car. It is able to get up and down the road at 30 mph, limping along, but when you give that clunker high quality gas and floor it, it breaks down. See? The thyroid med revs up everything and the adrenals just can't keep up.

You might want to get a 4 part saliva cortisol test. That will give you some insight into what is going on. You also might check out OTC natural progesterone cream. It may help those heavy periods. When adrenals are exhausted or taxed beyond their capacity, they will 'swipe' hormones from wherever they can get 'em. The natural progesterone cream can be a source of some extra hormones that the adrenals can draw on. Not in a dramatic fashion but possible.

Adrenals thrive on salt (one of the symptoms of low adrenal function... salt or chip/nut cravings) so add 1/4 - 1/2 tsp to a glass of water and drink it once - twice per day. Some add lemon juice and a sweetner (stevia or honey) to the brew and make a lemonade out of it. Do use only natural, celtic or sea salt.... not the white stuff. But just google 'adrenal cocktail' for more information.

Many folks have to tweak their vitamin/adrenals while also addressing their thyroid problems and it can be a mess and very discouraging but don't give up. Read, research, educate and advocate for your own health. I am in the states and even here so many docs are adrenal and thyroid illiterate or indifferent.

This link might be helpful and give you some insight into your possible adrenal problems.

stopthethyroidmadness.com/a...

[lcsnow21 in reply to phoenix23002]

Thank you! I know I still have a lot of work to do.. especially my ferritin. I posted my labs above. I did take ashwaghanda for about a year along with high doses of vitamin C and used pink sea salt. I was hoping that would get my adrenals in better working order. I did that because the first time I tried to take NDT I went haywire. My morning cortisol is always normal and I haven't wanted to pay for the saliva test My progesterone shows normal when it's measured to see if I'm ovulating. I've had blood tests for my hormones because of the infertility and they tell me everything looks good. My ovarian reserve is not 100% optimal but I'm 35 so that's not abnormal.

I've been on the leothyroxine for about a week now. I've had some very bad days and some pretty good days. It feels like it's starting to get into my system and so far so bad side effects. The NDT made me feel like I was on some kind of speed or something even on such a tiny dose.

There was a week when I was on the NDT when I started feeling a little TOO good and started working out hard. I lifted some very heavy weights. As soon as I walked in my house from one of the hardest workouts I started getting an ocular migraine. I basically crashed for 3 days and couldn't get off the couch. I was very dizzy and weak. Then after resting for several days I started getting that overstimulated feeling again. That definitely makes me think there is an adrenal issue too.

[phoenix23002 in reply to lcsnow21]

Yes... exercise... even activity that is more than a stroll can tax the adrenals. I know it is great to feel good but try to resist the urge to take on the world.. LOL... baby yourself until you get that cortisol test. I wish I was more knowledgeable but alas, I have never had adrenal problems so passing on information that I have seen others advise.

As for iron, one of the moderators on a yahoo thyroid group site swears by black strap molasses for her iron. She takes a tablespoon with each meal. She couldn't take iron supplements, too hard on her tummy but the bsm did just fine. (NaturalThyroidHormones.com on yahoo if you would like to join).

It is a shame you can't find a knowledgeable adrenal endo or doc. I have a feeling that until your adrenal condition is addressed, nothing else is going to work well for you. Wishing you luck, my friend.

[lcsnow21]

Thank you this is all helpful! And I really just appreciate the support. I was actually JUST reading about black strap molasses... Anything is worth a try! I just got some desiccated liver pills. Pretty gross haha

The journey continues. I'm taking a break from doctor shopping at the moment but will get back to it as soon as I have the energy! Thank you again.

Lauren