Help Please!

[Jefner]

Things just keep going from bad to worse with me. So sorry for the long post but I really need some help because I don't know what's going on I really don't and I don't know how to try and balance things anymore, it's all beyond me now.

Near end April this year I did a full panel, rather than link my post it's easier to post all results here for viewing.

125mcg Levo, 10mcg T3 split dose (same dose since 2023), felt extremely poorly posssibly T4 being too high for me

Vitamin D 121 (50 - 200 nmol/L)

* CRP 0.61 <5.0 mg/L

* Ferritin 99.40 (13 - 150 µg/L)

* Serum Folate 29.80 (8.83 - 60.8 nmol/L)

* Active B12 H >150 (37.5 - 150 pmol/L)

* TSH L 0.02 (0.27 - 4.20 mIU/L)

* Free T4 H 22.7 (12.0 - 22.0 pmol/L

* Free T3 5.2 (3.1 - 6.8 pmol/L)

Cortisol (Random) 443.0 73.8 - 507.0 nmol/L

After those results it was recommended on here I drop my T4 to around 112mcg or alternate between 125 and 100. Because I felt so extremely poorly I dropped down to 100mcg for a while to try and get rid of the excess T4 as my anxiety was beyond debilitating.

Cortisol quite high obviously due to the anxiety symptoms of being overmedicated

Then being impatient and for some reassurance to calm my mind down I retested again just under 4 weeks on 100mcg

29th May

TSH L 0.15 (0.27 - 4.20 mIU/L)

* Free T4 19.6 (12.0 - 22.0 pmol/L)

* Free T3 3.5 (3.1 - 6.8 pmol/L)

After those results I felt a bit better seeing my T4 was going in the right direction and some of the "severe" anxiety was settling down a little so I decided to stay on the 100cg a little longer due to not having left enough time to stabilise on that dose for a more accurate result.

So at the 9 week mark of being on 100mg T4 it was time to get a full panel again. I had intended to do it sooner but kept forgetting to split dose my second dose of T3 and take a tiny dose at night so had to move the test on to the following week, because of how the lab works I can only really test on a Monday/Tuesday as it's a home kit and goes in the post.

Also discussed on here my B vitamins in that they may be stimulating me too much and I bought some Igennus ones to try instead as my B12 levels always seemed to come out too high and I had been on the same brand for years and thought a change with lower doses in some B's might help and not taking them every day. Pre-test my latest results I hadn't taken any for around 2 weeks or a little more mainly because I know I was due to test and needed to stay off them. It ended up my being off them longer because I messed up on not taking my small dose T3 night before the test a couple of times so my latest test and I am quite shocked by my results to be honest.

Last couple of weeks, more depression, panicky, fatigue, increased anxiety, palps, jittery, tremors, feeling drowsy in the day, waking up with a real sense of dread and fear, and needing a little more Diazepam than normal. I actually felt I had gone hypo dropping down to the 100mcg because when I tested last July on 100mcg T4 I was rock bottom in the range which is why I then increased to 125mcg where I stayed on. (TSH 1.10 - T4 12.0 - T3 3.56), so I expected my latest results to show that I had dropped too low again but that isn't the case!!!!

9th July - 2024

Vitamin D 81 (50 - 200 nmol/L)

CRP 0.65 <5.0

Ferritin 102 (13 - 150 µg/L)

Serum Folate 15.10 (8.83 - 60.8 nmol/L)

* Active B12 94 (37.5 - 150 pmol/L)

* TSH L 0.14 (0.27 - 4.20 mIU/L)

* Free T4 20.5 (12.0 - 22.0 pmol/L)

* Free T3 3.6 (3.1 - 6.8 pmol/L)

* T4 Total 124.0 (66 - 181 nmol/L

* Cortisol (Random) 264.0 73.8 - 507.0 nmol/L

1. My Vit D is too low so I am back on my supplement for a while. Being agoraphobic I don't get much daylight.

2. Is my Ferritin too high? Although I do eat a lot of dark chocolate.

3. My Folate is too low which on reading can cause some of the symptoms I am experiencing MORE of including mental, plus on reading us oldies need more of it. Would I be better just taking Folate on it's own or continue with a B complex? nhs.uk/conditions/vitamin-b...

4. B12 has obviously dropped dramatically due to not taking my B Vits, and when I do my B12 results are ALWAYS over range.

4. Look at my T4!!!!!!! I expected it to drop dramatically back to the bottom of the range being back on only 100mcg as results showed last April but it's still a little too high. It has never been that high on just 100mcg, in general from past results 100 isn't enough. Could my higher levels just be due to this damn Hashi's or could the B Vits also play apart in some way. I just don't get it. In fact it's just as well I stayed on 100 because if I had increased to 112 (which had been recommended on here, and I was thinking of doing from my April results) my T4 would have been much higher. I expected my T4 to be right at the bottom but it's not. I dont even know what level T4 I feel better on because I just feel constantly ill and have for years now mainly due to all this anxiety which has plagued me since my late teens.

5. T3 is still low where it always has been since I started it

What in the hell do I do now??????????? Feeling worse than ever and am completely at a loss and just losing hope every minute of every day. I can't consistently drop my T4 to 75mcg, that would be far too low. What if I drop my T4 say to 75mcg twice a week just to get my T4 a little lower and then retest in a few weeks again?

I am tired of all this suffering for years. Can't concentrate and it has taken me an hour to do this post. I am beyond frightened that things will just never get better for me because I no longer know what to do or where to go for help

[Jefner]

anyone?

[TiggerMe Ambassador]

With results like those I'd say leave your T4 dose alone and add a little more T3

Free T4 (fT4) 20.5 pmol/L (12 - 22) 85.0%

Free T3 (fT3) 3.6 pmol/L (3.1 - 6.8) 13.5%

[Jefner in reply to TiggerMe]

but I always feel worse when my T4 is that high, realistically it should be around 16-17 for me. I know I need to attend to the T3 but I need to get my T4 lower

[TiggerMe Ambassador in reply to Jefner]

You might find that adding a little more T3 will also lower your fT4 level

[Jefner in reply to TiggerMe]

how does that work

[TiggerMe Ambassador in reply to Jefner]

Often people find that happens and a reduction in T4 isn't necessary, I would suggest it's your low fT3 that is making you feel awful and with a small increase you will soon know if that's the case

[Jefner in reply to TiggerMe]

I would still like to know how and why that happens. Everyone has said for a few years now that it's my low T3 causing me all the anxiety but it's not. I have suffered with anxiety literally most of my life and it was only the AD I started some years back that gave me my life back, alas it doesn't work anymore but I am stuck on it. Even with an increase in T3 it may cut down the severity of it but it won't completely disappear now. Reading up on low Vitamin D and Folate, I am experiencing some of those symptoms as well. My D isn't low but deffo needs to be higher but my Folate has dropped because I left off the BVits for a while. Am wondering, as I mentioned in my post, whether I actually NEED ALL the B Vits or maybe just some B12 and Folate taken separately

[TiggerMe Ambassador in reply to Jefner]

It's generally better to take a B complex long term but if you want to raise B12 and folate first with individuals that's fine, you need to trial a few ways to see what works best for you

[Jefner in reply to TiggerMe]

yeah I was for some years, same brand of Seeking Health that my old FD put me on but about 3 months ago I posted on here about possibly changing (different doses of each) as I kinda noticed that, on a rare good day with not much of my waking anxiety, after I had my B complex with my brekkies (lunchtime) I would start getting anxiety again so I found out on here that they can be quite stimulating and put it down to one of the B's being too high a dose for me but which one I have no idea plus my B12 is ALWAYS ALWAYS over range on my tests so I thought a different brand with a lower dose of that might be in order . Could be the Niacin in my current one that stimulates me too much. . I just assumed as you pee them out I needed them every day but apparently not, poss just 2-3 times a week.

I noticed from your bio you have certainly done some work on yourself as well as me in regards to testing. I had an Organic Test and Gene one too

[Sofie007 in reply to Jefner]

Hi Jefner, I’ve been following you because I am also agoraphobic yay. But the reason why extra t3 medication might lower your t4 is because it lowers your tsh. Tsh sends signals to make t4 but when tsh is supressed it won’t do that. Because right now your own thyroid gland might still be producing some t4. Does that make sense?

[Lovecake in reply to TiggerMe]

That happens to me.

[sparkly]

Hi Jefner, sorry if this doesn't apply. I don't know how old you are but could your sex hormones be an issue. Are you perimenopause or post menopause, on hrt or not?I know for me hrt and sex hormones play a major part and recently I stupidly reduced my estrogel I felt dreadful. I'm very mindful now not to blame thyroid for everything as lack of oestrogen post menopause or the peaks and troughs in perimenopause were terrible for me.

[Jefner in reply to sparkly]

yes I am post menopause a few years now being 62 and have been on hrt patches for a while now. I consulted privately with a meno specialist who just went by the book with me. The patch wasn't giving me enough so she moved me to the gel and progesterone capsule to insert which worked better as regards absorption. Did bloods inbetween and she wanted me to increase my gel by one squirt which I did and omg it nearly sent me over the edge, I felt suicidal and she didn't really care so I stopped seeing her and rather than just stop it all because it's a hormone I went back on the patch so at least I was still getting some and that's where I have remained since around 2019. Was thinking of coming off it and have discussed with my GP but trying to get the thyroid sorted, can't mess with too many things at once or don't know what is or isn't working. Mum had a really rough time with her menopause but from I remember it was just the flashes that were troublesome for me, I think the AD I was on in the early days maybe helped all the other symptoms

[sparkly in reply to Jefner]

I know for me I have to take high doses and my body loves progesterone as not only makes me sleep but find it calming. I noticed this more when my utrogestan was increased.Also wasn't until testosterone was introduced did things really really become balanced, I feel it's helped thyroid wise too but likely things I blamed on thyroid was actually due to low testosterone. Energy, brain fog and general well-being feeling was main benefits for me, couldn't be with hrt and definitely not testosterone. I know I bang on a lot about it but as most of us are either peri or post a lot will be suffering without realising, I was one who didn't know at the time.

It's so difficult when your not feeling great to work out what is causing what.

I'm still not balanced thyroid wise even after 12 years.

I hope you work things out

[Jefner in reply to sparkly]

i need to attend to the hrt again, I do remember the progesterone didn't suit me

[sparkly in reply to Jefner]

A lot of ladies take it vaginally to avoid symptoms and some can't tolerate it at all which is a shame. Perhaps look into testosterone as post menopause ladies seen to respond better to it, my body loves it but I love any hormone thrown at me

[Jefner in reply to sparkly]

yeah that's how I took it. I need to look into it again once I can get my thyroid levels in a better place