Very low TSH on Levothyroxine.

[Guppy70]

So I've now been on 88 mcg of Levothyroxine for almost 8 weeks. I went through a rough time of subacute thyroiditis starting this spring and was first very hyper then very hypo.

My blood draw just before starting the Levo was:
TSH: 18.70 (0.47-4.68)
Free T4:0.39 (0.78-2.19)
Total T3: 0.94 (0.97-1.69)

I just checked my levels again, first time after starting Levo:
TSH: 0.10
Free T4: 1.31
Total T3: 1.40

I know testing the Total T3 isn't ideal, but my endo don't want to test the Free and unbound T3.
I'm going in next week to see her again and to go over these results. I do feel way better than when I was too low. My under eye bags have gotten smaller and I do have more energy. But now I'm worried she will think my TSH is too low and lower my Levo dose. But that will also lower my thyroid hormones and I'm scared half to death about feeling aweful again.

I've read that a too low TSH can cause bone loss. And a too high TSH can cause thyroid cell growth, one of the reasons they keep it low on purpose in thyroid cancer patients.

But what to do in a case like mine? I don't want my T4 and T3 to get any lower. In fact, I think the T3 could go higher but it's hard to tell for sure without the FT3. I can't say that I do feel "optimal" yet but that might also be because I'm still recovering from this illness?

Will a constant too low TSH make the pituitary gland "shrivel up" and maybe cause other diseases like Cushings? I definitely don't want that. But I also don't want to compromise and have to live with too little thyroid hormones.

I do know that at one point I will be taken off the Levo completely to see how my own thyroid function will do, there's still a chance it will repair itself after the thyroiditis. The thing is though, I've had all the hypo symptoms before the inflammation for about a year before it started.

I've tested my TPOab (within the range) but no other antibodies and I don't think my endo plan to do so either in the future. Autoimmune disease runs in my family, my sister for example have Graves disease.

Thank you for reading!

[Guppy70]

Totie, thank you!

Ugh, I hate a rapid pulse, I experienced that too this spring when I got thyrotoxicosis.

When I first started the Levo, 88 mcg, I finally started to feel better and better. My follow up thyroid panel showed my T's were quite low in the ranges but my TSH was only 0,1. So my endo drastically reduced the Levo down to 50 mcg. And within days my hypo symptoms came back full swing. I begged her to up the meds again that's why I'm on 75 mcg right now. But I would have wanted to stay on the 88 mcg, maybe even raised it a little bit to raise my T's but I wasn't allowed to.

She called me "slightly hyper" even though my actual thyroid hormones were pretty low. I just don't get that. I now really want a doctor that's not a TSH worshipper and wants to help me feel great, not just have numbers that looks good on the paper. But that seems impossible to find, but I'm not giving up. :)

[Totie]

Apparently it causes a fast heart rate being hyper (medically induced).

When I was going through thyroid storms (before being diagnosed) my heart rate was 140 sitting down.

Now even though I am clinically hyper I do not have a fast heart rate. Mine usually runs 85-90.

[Guppy70]

Totie, I almost wish that me too had a -full- hysterectomy back then, at least I would have known what was happening. Well, my obgyn surgeon said first he acctually would remove everything but I insisted on keeping one ovary if the growth wasn't cancer.

The NP did say though that all the symptoms I had last year couldn't have been just menopause and I most likely had thyroid problem already then.

I'm happy for you you do have a great doctor that does what's best for you. I want to find someone just like that. :)
Does he say why a very low/undetectable TSH can cause A fib?

[Totie]

I had a full hysterectomy at 42 and was immediately put on HRT patch the day after. I also suffered from graves / hyper about 20yrs ago. Had RAI and then totally thyroidectomy. I am 44 now.

Currently I have undetected TSH,and my doctor (love him) says as long as I feel fine and no symptoms no need to change my dosage. All though he does warn again A fib.

Right now my HRT (patch)is .0100 every 4th day.

[mommom81]

Hi Barb,
I have been hypothyroid since 1997 and have just been diagnosed with osteopenia. Since my mother had osteoporosis, I am concerned. You said that you reversed your osteopenia that is good to hear. What kind of Vitamin D do you take? Exercise? Weights?  I have started calcium, magnesium and vitamin D but I am not sure if they are the correct ones.

Thanks,
Pat

[Guppy70]

I went to the Women's Clinic yesterday and met with a NP. I've been reading up on HRT, bio-identical hormones and everything about menopause and I pretty much made up my mind already I do not want to take the traditional HRT. Not because it can cause cancers but more because it doesn't sound like it's doing anything good anyways in our bodies.

I'm already using a plant based progesterone cream and according to "new light" some now believe it's the almost non existing progesterone that causes all the menopause symptoms in menopause, not so much the estrogen since we have "too much" of it thanks to our environment.

I just bought a book "What your doctor may not tell you about menopause" by a MD who talks about these things. I will read it, take it slow (trying not to panic, lol) and just realize I'm acctually already "on the other side".

The NP couldn't manage my thyroid but she agreed that it's too early to go off/lower my Levo at this point, she also knew that SAT takes at least 18 months and can very well lead to permanent damage. She told me to perhaps letting my PCP manage it from now on if my endocrinologist wants to take me off my meds to see how my thyroid is reacting when it's still too early.
But I know my PCP wouldn't want to "undermine" my endo since they're in the same medical group. So I will simply call up Medicaid and ask them if they can direct me to a PCP that's not within the same network.
I feel I'm a pretty straight forward case at this point, just need managing of the right dose and probably don't really need an endo anymore.

I feel better than in a long, long time right now. Looking at my latest labs I could do with a tiny raise in meds, I think that would lead me to my personal sweet spot, but right now I'm just happy I feel like this. I've already bought all new work out outfits to try to inspire myself to "take the plunge" and acctually work out as well. After Christmas I will start...I think...:)

[Guppy70]

Thank you Barb, and yes, I'll let you know how my appointment went. I'm really exited! :)

[Barb135]

Don't get too set on 18 months for the SAT, as it does often become permanent, sometimes, but I agree that you have to, at least be on med until it does pass, if it's going to as you can't sit around like a zombie just because the doctor doesn't want to give med.

I'm sorry to hear that you've had to cash in on your 401K, but at least you've had that option and at some point, we hope you'll still have Social Security and Medicare to fall back on, when you get older.  

I do wish you the best of luck with the women's clinic and the NP.  If they have a good reputation, I'm sure they're going to be good for you.  Your appointment is only a week away, so that's not long to wait.  Make sure you let us know how the appointment goes and whether or not the clinic is somewhere you feel you'll be comfortable staying for treatment.

[Guppy70]

Thank you :)

i did find the perfect obgyn that deals with menopause and thyroid but unfortunately he didnt take Medicaid. That's when I was directed to this Women's a Clinic, they're all in the same network. And they told me these NPs are wonderful and that I won't be disappointed.

Yes, it's this month, December. So it's coming up fast.
And yes, my endo don't want me to be on Levo at all. I just wonder how long she'll let me have very low numbers before she makes the assumption my thyroid is permanently damaged.
I'm willing to go off all meds but not until about 18 months have passed, that's how long this SAT lasts, sometimes longer. I've only had it since April so I'm nowhere near that.
I had to "beg" for meds back in September when I was really sick and every test came back low. So she was probably never planning on giving me meds, ever. I wonder if she treats her diabetic patients the same?

My plans are to become energetic, strong and get my mental drive back so I can start working and get a good health insurance. I don't want to have to be sick for a year or two more just to prove a point. I can't stand it, nor can I afford it. I've been cashing in my 401K so far just to get by, not really what I planned for, but at least I was lucky having that option. But now I probably have to work until the day I die, but I don't mind as long as I'm healthy and happy. Never, ever do I want to be forced sitting on my couch again staring at my walls! Yuck!!

I'm not sure how a NP operate in my state but even if they'll have to report to a physician at some point I just have the feeling they'll be great patient advocates and really help me get the treatments I need. :)

[Barb135]

Yes, your FT4 is way too low in the range and I agree that you need an increase not a decrease... your endo must be batty to be thinking you could cut your dose in half and still feel human.  

It sounds like your current endo is only concerned about getting your levels into range, then pulling the med and trying to make your thyroid go it alone and that won't work... I don't blame you for going elsewhere.

The women's clinic you're going to, sounds interesting.  I don't know about your state, but I think in most states, NP's have to report to doctors at some level.  That said, many NP's are more compassionate and ready to listen than doctors, but then I've had some that were not so good, as well.  It just depends on the person.  The bottom line is all about getting someone who is knowledgeable about thyroid and willing to work with you.  

Your appointment will be on the 22nd of Dec?  I certainly hope they will be willing to order the Free T3 test, along with Free T3 and TSH tests, so you "really" know what's going on.  Wishing you luck and hope to hear all about it, along with the new labs.

[Guppy70]

Thank you Barb for answering.

The ref range for FT4 is 0,78 - 2,19

The MA told me the endo had said that my levels were perfect now and that I now should cut my 75 mcg Levo in half!!!
I told the MA that no, I'm not going to do that. Last time she lowered my dose I got really sick within days. And Christmas is coming up, I can't be sick and not be able to move from my couch. She said she would tell the doctor that and I still haven't heard anything back. But no, I'm absolutely not lowering my dose. I want to raise it!

I now have an appointment for a woman's clinic that deals with hormones and thyroid, it's run by nurse practitioners. I've heard they're really good so I will take my business there. It's obvious I'll stay sick if I'm staying with this current endo. She's not interested in getting me to my personal optimal levels, in fact, she wants to ruin it all for me. Who goes and lowers the meds when they're finally getting better? Unbelievable, I'm so disappointed. And angry.

I'm going to this new clinic the 22nd and I'm very hopeful. I've heard NPs are more helpful than many doctors, not so full of themselves and have more understanding of the patients needs and wellbeing.

[Barb135]

Menopause isn't the end of the world and you won't automatically get osteoporosis just because you're through menopause.  I've through menopause for 19 yrs and I don't have osteoporosis, nor do I take HRT.  

It's probable that your hysterectomy did kick you into menopause, in spite of what your surgeon told you; one ovary usually can't keep up, especially, when you're about to start peri-menopause anyway.  

Anyway, I was diagnosed, some years ago, with osteopenia, which the forerunner to osteoporosis and at that time, I began a regimen of calcium, magnesium, vitamin D and exercise.  I've since rebuilt most of the bone I'd lost, so to answer your question - yes, exercise IS helpful, when there's no estrogen left in the body.  And no, you're not doomed to have that flabby body for the rest of the of your life... Yes, there IS life after menopause..  It actually can get better, because you no longer have a lot of the worries you had before.  

All of that said, I see your latest TSH and FT4... your TSH is good , but your FT4 looks way too low, but we need the reference range.  Looks like you could stand to increase back to the 88 mcg again.  

[Guppy70]

Good grief, my doctors office called today and I was told I'm post menopausal!!! POST??? What???

Ok, I can understand menopausal, but I'm actually already behind it!! And I'm only 44. So I will check out HRT, I don't want to get osteoporosis and stuff. I'm pretty upset about this, I suddenly feel really old. I don't want to grow a mustache

My FSH came back as 126,1 and the ref.range for post menopause is 23 - 116,3. So I'm acctually more like grand mom-post menopausal. But it all makes sooo much sense now. Last year was hell in the hot flash department.

Does anyone know if menopause can cause thyroid problems? I think it's too coincidental that I got the SAT this spring.
I think my hysterectomy kicked me into menopause even though my gyno surgeon told me that wouldn't happen. And it's all related somehow.

I don't know how to be healthy now as a shriveled up prune. is exercise even helpful when there's no estrogen left in the body? Am I doomed to have this flabby body for the rest of my life? Is there even a life after menopause?

[Guppy70]

Hi again!

Yesterday I had another blood test to see how 75 mcg Levothyroxine is doing in my body for about 6 weeks now. The results:

TSH: 1.83
FT4: 0.88 (see first post, 0,78 is the lowest referens range)

She didn't even order a total T3 this time.

So, the TSH is pretty high for being on Levo. And the FT4 is very low in the range. I do feel better, actually better than in a long, long time. But not really 100%, but maybe that can never happen. I'm getting older too. Im relieved the TSH isn't too low anymore, she would have lowered my meds even more. But, 1.83, isn't that too high when on meds?

Her MA will probably call me today, then I will ask if I can raise the Levo up to 80 mcg. A very small increase. I do want to up the T4 a little.

I'm not swollen anymore and my terrible huge under eye bags are gone. I pretty much recognize my face again. But my wish is to have energy and strength to start exercise again (I used to be an avid daily runner) and tighten up my flabs. This year has definitely taken a toll on my body and confidence and all my clothes are getting too small.

I also had a FSH test done to see if I might be menopausal, and a B12 test but they're not in yet. I have started to feel hot every now and then again, but not as bad as before.

[Guppy70]

Just a little update; I called and left message this am at my endos office. I said how it is, I don't feel good and want to up the Levo again to at least 75 mcg.
So I just got a message from Walgreens saying my meds are ready for pick-up. So she did respond!

Hopefully I'm gonna start feeling better again soon and that my face will deflate.
But I can't see how I ever will feel optimal, I believe 75 mcg is still undertreated since 88 mcg were.

[Guppy70]

Barb, if it's gonna be anywhere near how I felt before I started Levo it's gonna be a drag. I'm not looking forward to that at all.

I just woke up here and it looks like my huge under eye bags are returning, I look puffy in my whole face.

When I've been reading about thyroid replacement in people who had subacute thyroiditis and when they're going through the hypofase, it seems like they're getting meds for a whole year before they're taken off to see how the thyroid has healed. I just started Levo! And if the thyroid will heal it will take well over a year, SAT lasts for 18 months.

Maybe I just call her back on Monday and tell her I want my 88 mcg dose back. It feels kind of unnecessary to become sick again with hypo when there's really no need for it.

[Barb135]

Wow - do you have any idea what you're going to feel like in 2 weeks?  

[Red_Star]

Yeah that isn't normal to go from hyper to hypo that quickly. But who said I was normal? hahaha.

[Guppy70]

Red Star, gosh, that's fast, just one day! Thank you for telling me, this way I know it's not just in my head.
And gives me some hope that it's just temporary.

[Red_Star]

Thyroid hormone is a narrow therapeutic index drug which means if your dosage changes even a little bit it can cause symptoms.

I went from overt hyperthyroidism to overt hypothyroidism in about a day  after I stopped medication. My cells have "issues".  It was like I had gone right back to the beginning again prior to starting medication! It took two weeks to be able to breath better.

[Guppy70]

Thank you for your answer!

Yes, I'm starting to wonder how this will end if I'm already having symptoms of hypo.
I'm going to wait for 2 weeks and if things are just gonna get worse and worse I think I will call the endo and tell her I want to up the Levo again . At least up to 75 mcg or something.

I don't think I can handle becoming too low again.

[Barb135]

T4 does have a long half life, but your levels were somewhat low to start with, and a drop from 50 to 88 is a pretty drastic change, so you could start feeling symptoms pretty quickly.  

I think you need to get back on the higher dose of med, pretty quickly. This doctor isn't doing you any favors.

[Guppy70]

Is there anyone who knows how fast one can feel symptoms from lowering levothyroxine?
Tuesday morning I started with my new dose, 50 mcg, going from 88 mcg.
Yesterday I felt tired, I even napped on the couch for 1 1/2 hour. Same today, I feel so tired and sleepy, I haven't gotten off the couch at all today.

Can it really be the lowering of meds making me this tired? So soon? I thought that t4 has a half-life of about one week? And can it then just be an adjustment for the body to this shift, and that I can still do well on the lower dose after it got used to 50 mcg?

One good thing is that last night I slept through the whole night when I otherwise wake up several times, often not being able to fall back asleep again. It was a very deep sleep for 8 hours, but I didn't wake up refreshed.

[Guppy70]

Yes, that's why I knew that I couldn't know for sure if it was menopause or not. I had a growth on the one ovary that was suspicious for cancer and I was told I needed the surgery. If it was cancer they would have removed everything and then some and would have had to start hormone replacement right away.
I told my surgeon right from the start I wanted to keep one ovary if it wasn't cancer just because I didn't want to end up in immediate menopause, if I wouldn't have insisted he would had removed both anyways, regardless. Typical man philosophy, lol. We do need every little drop of natural estrogen we can get.

I did go to my GP about 18+ months ago as I was starting to go down hill and told him all my symptoms and that I think my hormones are messed up and if we could check them. He told me I should go back to the doctor that performed my hysterectomy but when I called him I was told he only do gyno surgery and don't handle hormones. At that point I gave up, which was pretty stupid in hindsight. It could have saved me a lot of heartache if I just got a checkup then. Why my GP didn't want to do that beats me.

It could very well be menopause but then it would be so weird that my hot flashes just stopped as sudden as they came on. It's like night and day and they usually lasts for years and years. My moms lasted for over 10 years. But it sounds like menopause and thyroid symptoms are so similar it's impossible to know without labs.
I'm acctually almost scared of this FSH testing, I would feel old if it comes back as full blown menopause, lol. But, on the other hand I can get help.