Is it possible to feel worse over the years having previously felt ok on levothyroxine only?!

[underact15]

I’m going to post my latest blood test results soon (still waiting for a few) but something I’ve been wondering about is this….is it possible to gradually feel worse on levothyroxine only having felt ok to begin with?!

I was first diagnosed at the end of 2015 and felt ok for quite a while. I was able to work, exercise etc etc….until last summer. Since then, I’ve felt increasingly rubbish with new symptoms (intolerance to exercise, weird periods, headaches, dazed, imbalance, unbearable anxiety, insomnia etc etc) and now every day is a struggle. Is it because I now have less of a working thyroid due to the Hashimoto’s?! Do our symptoms change and worsen over time?!

I have obviously asked my endocrinologist about all of this but her answers are always very general….”it could be lots of things” is her standard reply!!! 🙄

[SlowDragon Administrator]

Looking at previous post

healthunlocked.com/thyroidu...

Ferritin still low, presumably working on improving this

Are you still strictly gluten free

Do you always get same brand levothyroxine at each prescription? Eg when dose was increased to 125mcg

Likely to need addition of small doses of T3 prescribed alongside levothyroxine

Have you had Dio2 gene test done?

If you test positive this can help persuade NHS to prescribe

[underact15 in reply to SlowDragon]

Morning SlowDragon, thank you for replying.

Yes, still working on Ferritin - now a level of 38 and I’ve been referred to a haematologist (by my endocrinologist! 🤔).

Yes still strictly gluten free.

Yes, always the same brand. I had to battle and I’m cutting 50s in half but I know I can at least rule that out.

No to Dio2 gene but I’m strongly considering it. Can you advise how to get it tested?!

[SlowDragon Administrator in reply to underact15]

Test by Regenerus via Thyroid U.K.

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

[underact15 in reply to SlowDragon]

Thank you 🦋

[fuchsia-pink]

Yes - this is why we need regular - at least annual - blood testing.

Personally, I was fine on levo-only for a good decade: then not. I'm now very happy adding in a bit of lio - but when it was (thankfully only briefly) taken away from me early in 2020, I deteriorated really quite quickly, then bounced back when the lio was restored.

So you may well need to tweak your meds too, as you're not feeling sufficiently well on your current dose. It's all trial and error and teeny-tiny changes, until you notice that you're properly "you" again

Good luck x

[underact15 in reply to fuchsia-pink]

Thank you, that’s really encouraging 💖🤞🏽

[humanbean]

Is it possible you are approaching the menopause? That makes a difference to lots of hypothyroid women.

[underact15 in reply to humanbean]

I’m 37 this year so I’ve been told I’m too young for peri menopause. I have wondered though 🤔

[mistydog in reply to underact15]

Unless they test you they can't rule that out, some people have earlier menopause. Chances are you now need a dose increase

[underact15 in reply to mistydog]

Maybe I should ask for a test. I tried an increase in levo a couple of months ago and felt worse

[fuchsia-pink in reply to underact15]

How big was your dose increase? It's common to increase levo by 25 mcg a day when first prescribed, to build us up to something sensible - but once you're tweaking what used to be a good dose for you, much smaller changes can be helpful. For example, I was on 150 x 4 days and 125 x 3 days when told I was "over-medicated" [I wasn't as free T3 hadn't been tested, so presumably TSH had dipped]. I reduced to 150 x 2 days - no change in bloods or how I felt; but reducing to 150 x 1 day left me feeling dreadful and horribly under-medicated (although again there was no change in bloods) - that's a change from 950 mcg a week to 925 mcg a week so pretty negligible but it made such a difference to how I felt [and led to the testing free T3, spotting the poor conversion and me getting a bit of lio to add to the levo]

So I'd recommend getting as much tested as you can - TSH, free T4, free t3, ferritin, folate, vit D and B12, posting the results here and considering baby-step changes in your meds till you hit your current !sweet-spot" x

[mistydog in reply to underact15]

As fuchsia-pink says, you won't know what you need until you are properly tested so that's the first thing.

[underact15 in reply to mistydog]

Thank you both. I’ve had full tests since Dec 👍🏽 I did another post shortly after this one - I think you’ve both read it, thank you! 💖

[mistydog in reply to underact15]

I was on levo for 18 years but my new doctor wanted to reduce my levo. I couldn't get it back up. I put myself on NDT in the end.

[underact15 in reply to mistydog]

Very reassuring to know that I’m not the only once struggling to increase levo. I hope you’re feeling better on NDT?

[mistydog in reply to underact15]

Much!

[diogenes Remembering]

There are two reasons at least which can explain deterioration over the years. One is that you have had a slowly deteriorating fragment of active thyroid tissue (if you haven't had total thyroidectomy or radioactive iodine ablation). The other is that simple affliction that affects us all - ageing. In health the body compensates automatically. But on therapy, control is in your hands and the body is subordinate to that as regards outcome. Put simply dosing is not a once-and-for-ever constant, but a constant interrogation of how things are going at the moment and whether and how changes are to be made.

[helvella in reply to diogenes]

a constant interrogation of how things are going at the moment and whether and how changes are to be made

A beautiful way of putting it.

[underact15]

Sorry, I should have been more clear and said that I’m being properly tested for thyroid and vitamins, it was more of a general question 🙃

[humanbean in reply to underact15]

Make sure you get copies of all your blood tests, copy them into a new post., and ask for feedback.

It is common for doctors to be quite happy with a patient's results when nutrient levels are quite low in range. However, patients feel better when nutrients are optimal, not just low in range. Note that optimal doesn't always mean mid-range or top of range, it depends on the nutrient being referred to.

[humanbean in reply to underact15]

Another factor which could be making you feel worse is if you are not converting T4 to T3 very well. Since T3 is the active hormone you would feel very unwell if the level was too low for you. Unfortunately, doctors rarely test T4. They test T3 even less often.

But we may be able to offer suggestions if your T4 and T3 are not as good as they could be.

[underact15 in reply to humanbean]

I think I’m a rubbish converter. The highest my T3 has been is 4.5 but it’s now only 3.5. Increasing levo didn’t help much at all 😭

[ShatteredofLee]

This sounds similar to my experience. The first decade of having Hashimotos, I seemed to breeze through. I tolerated any old brand of Levo. Then I became really sensitive to brand changes and had to stick to one only. Then my body seemed to need more, but not too much. It was like a constant balancing act. I don’t think I’ve been a bad converter in the past but I def am now. So now take a small dose of t3 with slightly less Levo, which has helped with hypo symptoms. This journey has been over 28 years and through a menopause. I’m wondering though about what you said regarding whether you could have had covid and not known. I caught covid mildly (diagnoses), but since then lots of fatigue, giddiness, fluctuating thyroid levels. Good luck, I’m sure you’ll find your balanced place. Take care

[underact15 in reply to ShatteredofLee]

Thank you so much for replying 💖 That does sound like me. I definitely felt ok on levo for quite a while but the last year has been horrendous and I’m really struggling with every day life 😰 Very annoyed that my endocrinologist won’t even let me try T3, she’s just convinced that it won’t help and I’ll feel worse 😭

I’m going to do a covid antibodies test. If it comes back positive then at least I’ll feel like I have a bit more of an answer as to why I suddenly started feeling extra awful last summer! 🤔

[ShatteredofLee]

Everybody is so different. I'm on 100mcg of (mercury pharma) levo and 5mcg of lio. It sounds such a small amount of lio but its made a massive difference to my health. No low morning temperatures, no headaches, just that bit more energy. It shouldn't be necessary to go private for an endo, but if you havn't got joy from your current endo, you might want to take a look at the list ThyroidUK have for recommended endos. I used one and they were really very helpful indeed. It makes you feel more in control of your own health too. Take good care of yourself,

[underact15 in reply to ShatteredofLee]

My endocrinologist is private and from the Thyroid UK list 😭😢😰

[ShatteredofLee]

Oh no. I’ll pm you.