I’m a youngish person and just feel I won’t have decent quality of life ever again. I used to have a career I adored, was self employed, had hobbies, felt happy etc and now I just feel like I have nothing as it’s all stopped.
If anything things have got worse on levo, no matter my doseage and adding in t3 seems to help a little but not by much. Still feel like less than half the person I was.
I was offered a trial of t3 only but don’t want this as I’d like to have a child some day soon so currently doing t4/t3 combo but feel am having same issues with levo as before. So not sure where that leaves me as I need some t4.
A year ago I was 38 weeks pregnant, taking care of 3 kids under 5 and redecorating my bedroom, alone! Climbing ladders, stripping wallpaper, painting..... the lot. I had soo much energy, these days all I think about is sleeping, I have no energy to do anything.
Have you had your vitamin levels checked?
I really hope the meds start helping you soon. I'm sure the lovely people on here will have some good advice regarding dosage etc.
This sounds so familiar to me. We’re the same age too! I barely even recognise myself these days…I don’t have kids and kinda losing hope I’ll ever be well enough to really!
My vitamins weren’t great but I’ve been working on them since April so making some improvement. The only thing thyroid medication seems to do for me is make me poop lol…everything else just stays crap. I’ve been on higher and lower doses of levo this year and just feel like it all does the same really and I don’t feel better/feel like me.
I also don’t want to spend years of my life titrating medications and spending months at a time suffering for it. It’s miserable.
Those who seek advice from a forum are the cases where mainsteam treatment isn’t the usual success. It is for the majority, that’s why it’s the standard treatment, - that unfortunately leaves a significant minority scrambling as doctors are only equipped to offer the same for all & don’t understand why some struggle.
No one thought to set up a forum for all the ordinary cases, they are living their lives not writing on a forum.
My dad has been on Levo for over 40 years. He became ill with hyper, had an operation very soon after & managed great on what ever dose the doctor suggested & what ever brand the chemist happens to dispense.
He “usually” remembers to take his Levo, but does goes months forgetting to test his levels. He’s s well & very active, so it’s not a priority.
It’s reassuring to hear about your dad’s story, that he’s doing well. that’s kinda what I long to feel like on levo but I’ve been on so many different dosages now and not much changes. My t4 shoots over range on pretty much every dose and then I get symptoms of being over medicated but then if I stop it completely I feel way better until hypo symptoms creep back in….
It just feels a bit like putting together an ever changing jigsaw puzzle but most of the pieces are missing and you’re blindfolded 🙃🤦♀️
If I ever get back to feeling like me, I’ll be coming back here to give some hope to others!
I'm 37 now. 34 when diagnosed. (But I can trace symptoms back to childhood.) It has taken me 3, very long, years but I can honestly say I'm back to 70%.
It happened all of a sudden and I was close to seeking an ME diagnosis because I just wasn't improving and I was rapidly approaching rock bottom.
Don't give up.
I have 2 small children; the eldest I didn't even teach to wash her hands after she had a wee because I couldn't stand that long. It was dire.
Now, we have days out together, I'm decorating the house, working full time etc etc I even managed to break out my running shoes not long ago.
This is so lovely to hear and very reassuring. It's so nice to hear that you've recovered (to 70% at least!) I can only hope the same for me sometime soon!
Thank you, i sure hope so cos not much has changed since March
These are my most recent from last week (nhs, so different ranges)Im finding the more b12 goes up the lower ferritin drops, despite supplementing heme iron and symptoms remain the same. Have been supplementing since June this year.
I actually had high iron and low ferritin in 2020 so would you suggest I stop the iron supplements for now?
If it has been three years since your last iron panel then the results of that test can no longer be relied on.
With high iron and low ferritin, and then taking iron supplements to boost your ferritin there is a good chance that your iron levels have got much higher while your ferritin may have barely risen. High iron in the blood stream gives one of the main ingredients needed for growth for pathogens and other nasties, so taking iron supplements with high iron isn't recommended, even if ferritin is low.
Have you had your B12 and your folate measured since you had that iron panel done in 2020? What were the results? If they were low what did you supplement with to improve them both?
If folate and B12 are low while iron is high and ferritin is low, then improving folate and B12 can help to even out the high iron and low ferritin. Folate in particular is very important in the processing of minerals in the body. But before considering folate supplements, it is essential to supplement B12 first if it is very low.
The important thing about folate is that supplementing with folic acid to imporve it is a bad choice. The best supplement is methylfolate.
I was offered a trial of t3 only but don’t want this as I’d like to have a child some day soon so currently doing t4/t3 combo but feel am having same issues with levo as before. So not sure where that leaves me as I need some t4.
You might find these links encouraging on the subject of T3-only and pregnancy :
Thank you I will have a read through. unfortunately I have other endocrine issues that complicate pregnancy/getting pregnant so think sticking with t4 would be wise if I can!
hi there. I’m kind of back to normal, with exceptions.
I work full time, am 50 next year, have an allotment spent 3 hours shovelling and barrowing muck on Sunday with a load of blokes who work outside for a living. I do iyengar yoga (headstands etc) when things are right in terms of hormones, vitamins and for me especially ferritin I can do everything.
but I felt dreadful for much of my 40s. Used to run 8km 3 times a week, gained chronic ankle injury, numbness in my arm, fibroids and heavy periods. At my worst I was contemplating going part time and all the financial hell that would entail for us as a family, I had 12 weeks CBT for clinical anxiety and depression, I was sofa bound and Covid took months to recover from. I had days and days when getting in the shower was a struggle and hubby drove me to work or I took the train because I couldn’t keep my eyes open in the drive home.
What worked for me was finding this forum, following SlowDragon advice closely, listening and watching others, making friends and comparing notes, reading Izabella Wentz, committing all in on diet changes and, supplements and regular testing.
I still get it wrong and set myself back occasionally, but I know how to fix myself now, and I’m finding new limits as things improve.
3 hours on the allotment sounds dreamy (the shovelling muck not so much 😂) I had a plot down at the community allotment but had to give it up last year as I was so ill and I couldn’t manage. It would be absolutely amazing to get back there someday! You’ve given me some hope, thank you.
Do you ever get properly well with hypothyroidism?
Experiences of hypothyroidism vary a lot. Many people do extremely well on Levothyroxine and have normal lives. Unfortunately about 20% - 25% of sufferers don't do well on Levo and this forum is aimed at those who need help to get as well as they can.
There are quite a few reasons for people being treated poorly. These are just the ones that make me angry.
Doctors have very simple beliefs about thyroid disease.
a) They know that TSH is very low in those with hyperthyroidism.
b) They know that hyperthyroidism can be a dangerous condition which makes people very unwell.
And when it comes to treating hypothyroidism they are basically blinded by those two facts:
Low TSH = hyperthyroidism and is dangerous. What more do they have to know? Just reduce the hypo patient's dose if TSH is low, and the patient will be fine.
Another thing that doesn't get mentioned as much now as it did when I first started reading up on the thyroid nearly 15 years ago - some doctors believe that Levo is a stimulant - a bit like speed. Some also believe that Levo is addictive. It's been compared to heroin and cocaine. Why else would a hypo patient with a very low TSH want more Levo? They are already hyper according to doctors. And why do they want T3? That's assumed to be Levo x 50 i.e. faster speed, and more potent heroin or cocaine.
Of course, if doctors understood that T3 was the active thyroid hormone and tested for it routinely then they would see the following, and understand more :
1) An untreated hyper patient with a TSH of 0.01 could well have a Free T3 of 60 pmol/L where the reference range is (3.1 - 6.8)
2) A treated hypo patient could feel very well with a TSH of 0.01 and could have a Free T3 of 6.0 pmol/L with the same reference range.
But for both patients that low TSH will blind doctors to what the hypo patient tells them, and they will believe that the hypo patient is overdosed and will reduce the patient's dose of thyroid hormones, whatever they are.
In my first ever Thyroid Function Test that included both Free T4 and Free T3 my TSH was about 5.5. I've seen other people quoting Free T4 and Free T3 levels similar to mine from that first full TFT. In one case the TSH was about 10, and in another case the TSH was about 30.
TSH isn't remotely reliable, but it is believed in with religious fervour by doctors treating people with hypothyroidism who don't care what level of thyroid hormones we actually have. And that is why so many of us feel dreadful, and why TSH will probably not be toppled off its perch in my lifetime because it's easy!
I agree and haven’t had a great response from my gp, who has been very dismissive from the start really. It’s almost like they don’t believe things can be as bad as I’m saying, it’s tiring.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Feeling pretty well on T3, what shall I do with Levo?
What would You Do? T4 or T3-only or NDT?I have 48 hrs to make a decision.
Do you only get reverse T3 problems with T4?
First blood test results now I am on a combo of T3/T4. What do these results suggest. Thank you
