I've been struggling for a long time with this no thyroid bs, to put it bluntly. I've been as high as 200 and the lowest was 125 but the constant is that I feel sooo fatigue in a wired way since starting levo that it feels like I've been awake for days and trying to get by on coffee. I've gone from 137 (felt sluggish) to 150 mcg and find I'm achy and turns out I'm only staying in stage 2 sleep all of the time, also extremely achy. I awake and my eyes ache from behind and I feel like I'm breaking a fever now. My doc wants me to raise again w/o having done labs but my TSH was 2.1 and FT4 was 1.2 right at this time. My FT3 is flat regardless and that's nothing new but T3 doesn't give me that vibrant feeling like it does for so many.
I'm confused because regardless of my dosing, my labs tend to look the same at every single draw. I feel like I'm affected more mentally than physically by levo and I'm kind of curious if maybe this is more being inundated by T4 and maybe if I had less then I could sleep for once in 3 years since my TT and wouldn't feel like I needed to take ten minutes to convince myself to get up from th couch. No deep sleep either and I've noticed this has gotten worse about two weeks after raising, so thoughts? I feel like I've been a cripple and have done everything right but just want thoughts of there is something paradoxical going on.
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misscliocat
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Could you please post your latest blood test results along with the laboratory ranges. Your results don't make sense without seeing them along with the lab range, then we might be able to help.
If you've had vitamins and thyroid antibodies tested then post those too. I'm sorry you feel so unwell and I hope we can help.
I don't have vitamins on hand but I know that they were all nicely optimal when they were checked recently.
TSH was 2.1 range .3 - 5.0
FT4 1.2 range .8 - 1.9
Strangely, my TSH was 1.5 on last blood draw on 137 so it's gone up. FT4 went up a bit also. Frustration is that my TSH alters incessantly, which I get, but it is always contradicting. My FT4 also went from 1.0 up but last time I was on 150 a year ago, my FT4 was at top of the range.
Also, I do have hashi's and my numbers flares on NDT, hence why I went back to synthetic. Just as of recent they went, and back down, so now they are 25 at a range from 0-35.
I'm not sure how Hashimotos works when you have no thyroid gland but presumably you still have the thyroid antibodies and perhaps they can affect how you absorp the levothyroxine? It seems like you would be better to stay on one dose of levothyroxine and not change it unless you were very overdosed.
If your FT3 and FT4 are in range and FT3 near the top of the range then there's no reason to change the dose. It doesn't really matter what your TSH is doing as it's a pituitary hormone not a thyroid hormone and it simply indicates whether your pituitary gland is telling your thyroid to produce more hormone. It's your FT3 you need to keep a eye on to make sure you're getting enough hormone and not too much.
As Shaws says, if you have the opportunity to add T3 you may benefit as without a thyroid gland you won't be getting any direct T3.
Yeah, my FT3 is always at the bottom of the range. I should have a recheck soon, but I just don't understand how raising my medicine make me feel worse and more mentally restless and wired when all labs point to hypo.
But it is the case. If you don't have a thyroid, the immune system has nothing to attack, so you can't have Hashi's swings anymore. And, the antibodies - which just clear up the mess after an attack - have nothing to do, so they go away.
But, you're still hypo, of course you are. I didn't say the hypo and hypo symptoms went away. Now, you are entirely dependant on thyroid hormone replacement, and have to get that right. And the problem is that the majority of doctors have no idea how to do that.
It would be easier to comment if there were some labs to look at. It could very well be that you aren't converting well. And, who said that taking T3 gave anybody a 'vibrant feeling'? It's never given me one! But, I know what I feel like without my T3, and I know which feeling I prefer. You might not have taken enough of it - nothing will help if you don't take enough.
But, it isn't just about hormones. You say your magnesium, potassium and calcium were on point. But you cannot know what your magnesium is, because with a blood test, it will always be somewhere in range, due to the way the body handles magnesium. But, that does not mean that you aren't deficient. Your ferritin is flat? Have you tried eating liver to raise it? Have you tried taking high dose vit C with it to help absorption? What about your vit D? Have you had that tested?
And, Marz asks a very important question : how do you take your thyroid hormone?
You could have an absorption problem - lots of people do. But, we're never going to know if we don't see the labs.
I have a thyroid gland. I couldn't get well on levothyroxine. In fact I was far worse on it than before being diagnosed (TSH 100).
My personal opinion, due to my experience with levo, is that someone who has no gland should be prescribed a combination of T4/T3 at the very least. I take T3 only now. It has never made me 'vibrant' but it has removed all of my symptoms and I feel normal health.
Research has shown that many benefit with T4/T3 but some people are thyroid hormone resistant and if so, benefit by taking T3 alone. Others recover on NDT. I shall give you a link by someone who has a case before the Scottish Parliament.
Ohhh, what i wouldn't do to have my gland back. I had no idea the hell that would ensue. :/ I've taken T3 intermittently but i haven't had a lot of luck with it. I was taking 25 mcg with 137 earlier on and I don't feel much better... just flushed, of that makes sense?
We sometimes have to try more than a couple, if we are having symptoms. There are several T3s and several NDTs.
When I first had T3 added to T4 it was a revelation. I then went on to try several NDTs - still had some symptoms. Then onto T3 only and was fortunate that it worked for me, it was as if I had oxygen saturate every cell in my body (that may not make sense) in that all symptoms disappeared. (one T3 suited me better than the first one).
Levothyroxine also appears to suit millions of people so we are all different. Unfortunately one size doesn't suit everyone. It would be so much easier if it did.
This makes total sense! And I have a doc that suggested I could try 10 T3 to my 150 of T4 once more. May try that again but I feel so heavy, like irritable, a weight, cranky, and exhausted. No energy and I miss my life. I used to be a marathon runner and so energetic. And I'm only in my mid-30s! It's depressing.
Exercising before being on an optimum dose (one that you feel well on) may make you feel worse as it depletes whatever little T3 you have in the T3 receptor cells and it is T3 which gives us the 'energy'.
You're so good to me. If anything, now I feel weighted down. Like physically and emotionally like a brick, so working out hasn't been happening at all. :/
Allow your body to recuperate as it is under strain due to your thyroid hormones being out of whack. Once - and it takes time - you get to an optimum dose you will begin to feel more energetic and be able to do what you used to and learn how to pace yourself.
Thank you so much... I hope so. Three years and I've tried everything, have done everything right... I just had a doctor tell me that I knew more than home, lol. But it's hard to stay hopeful when you're just missing out, y'know?
You say your vitamin results were optimal but if you want to post them here we'll check for you. As you likely still have antibodies you might benefit from going gluten free. You could give it a 3 month trial and see how you get on. It might help with levothyroxine absoption and you could try taking probiotics and apple cider vinegar to see if they help.
Maybe 25mcg of T3 together with 137 T4 might have been a bit too much.
1/4 T3 to 137 T4 (25mcg of T3 is stated to be approx 100mcg of levo) may have been more suitable.
If we are on levo and having symptoms a 1/4 tablet every 2 weeks or so may be more gradual and suit you better. Keep in mind I am not medically qualified
I'm starting to think that since I've been on at least 150 of T4, with varying amount of T3 with it over time, I wonder if I'm actually over medicated on just this much of T4... one consistency is the feeling of 'strung out'. Hrmmm...
Which vitamins were good ? B12 needs to be near the top of the range with Hashi's - Ferritin & Folate mid range - and VitD at 60 if you are in the US or 100 if in the UK 😊
I know Mag, Calcium, Potassium were on point... vitamins is above 60, B-12 was high range and iron yet ferritin has always been sad... and that hasn't changed regardless as to what I do to boost it. :/
Having a good level of FERRITIN is key for T4 to convert into T3.
How do you take your Thyroid meds ?
I have glanced back over your posts during the past two years. May I suggest you read through them all again and make notes. There have been so many helpful replies.
😊😊
EDIT :
You could ask a NEW question about the best types of supplements to raise Ferritin - here on Thyroid UK. helvella has lots of info in his DropBox
Oh, this site has been so helpful!! I've been so grateful for the help and advice... and I'll have to check that out! I've been using molasses as of most recent so I'm open to anything.
Hi, misscliocat,
Many of us have had very bad reactions to Generic Levothyroxine! The manufacturer puts," fillers", into the pill that,Brand Name", Synthroid does not have. The manufacturer will swear that they are identical! But for many of us out there our body chemistry's reject the Levothyroxine! So we have to pay for Synthroid!
The same goes for generic Tenormin called Atenolol that can be ineffective for treating a tachycardia problem. That happened to me. I almost died from the use of these generic medicines. I'm not suggesting that this will happen to anyone else! But a very few of us can not take these two generic prescriptions. I've read the testimonies of other people who have taken these two medications and they did not work properly. Good luck to you!
You're so sweet for helping out! It's funny you mention this, I've only been on Tirosint, Levoxyl, and Synthroid for the synthetics, but even on 50mcg of Synthroid has caused some sinus issues, so I'm going back to Levoxyl. It's soooo wild how these draw out other issues!! But one has been feeling very congested later in the day on it.
Loads of great advice here. Nothing is wasted in posts. I would just add that tired and weirdly wired, but not, is highly symptomatic of low t3 for me. My experience of taking anything with T3 is that it can feel over-replaced while my body adjusts. My adrenals improve once levels are in a good range. I tend to boom and bust....squeeze out every last drop.of energy when it's there...bad protocol for hypothyrids. A recent-ish study showed that athletic activity used up greater quantities of t3 - I should say, proved...cos that seems like a bit of a no-brainer. And would it figure that a huge surge in demand will rapidly and unevenly deplete stores, and all interconnected systems, which rely upon a once daily maintenance dose instead of normal unlimited supply from continuous titration.
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