help and advice needed please: Hey folks, I know... - Thyroid UK

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help and advice needed please

Jefner profile image
16 Replies

Hey folks, I know many of you consider me a nuisance and a pain but being totally alone and isolated with no friends, family or support, and spending most of my days in fear with all this, here is the only place I can come for advice and a little reassurance

After my slightly over range T4 results back in April which was enough to make me feel extremely rough on 125mcg Levo (T4 H 22.7 12.0 - 22.0), I then tweaked to 100mcg Levo and retested in July and it still came out slightly too high for me (T4 20.5 12.0 - 22.0) so I then decided to alternate between 100mcg and 75mcg and after around 6 weeks on that dose I tested with following results (followed the usual protocol before testing) and I was also fully off my B Vits for around 2 weeks before I tested.

3rd September 2024

Vitamin D (25 OH) 104 (50 - 200)

Magnesium 0.9 0.7 - 1.0 mmol/L

* CRP 0.85 <5.0 mg/L

* Ferritin 91 (13 - 150)

* Serum Folate 19.20 (8.83 - 60.8 )

Active B12 114 (37.5 - 150 )

* TSH L 0.23 (0.27 - 4.20 mIU/L0

* Free T4 18.3 (12.0 - 22.0)

* Free T3 3.4 (3.1 - 6.8)

* T4 Total 102.0 66 - 181 nmol/L

* Anti-Thyroglobulin Abs 45 <115 IU/mL

* Anti-Thyroidperoxidase abs 30.3 < 34 IU/mL

Cortisol (Random) 191.0 (73.8 - 507.0)

Then I retested a couple of weeks later around the 8 week mark due to finding a kit I had had for some time and forgot about and needed to use because the vial only has a certain lifespan. Looking at the slight difference in T4 levels at the 6 wk mark and 8wk mark (below), it would seem that (for me) after a tweak, retesting at the 8wk mark may provide more stable results.

25th September 2024

Magnesium 0.9 0.7 - 1.0 mmol/L

* TSH 0.48 (0.27 - 4.20)

* Free T4 17.4 (12.0 - 22.0)

* Free T3 3.6 (3.1 - 6.8)

* Cortisol (Random) 314.0 (73.8 - 507.0)

I feel my sweetspot as regards my T4 is mid range around 16-17 and have noticed since my latest results, my anxiety levels haven't been quite as severe as it has been when my levels have been much higher ALL this year, but, as always the anxiety is still very prominent in my daily life and has been for many years now.

Would have posted sooner but the last couple of weeks my anxiety has risen again due to dental issues and the fear of going to get things attended to. It was a real struggle to go but I finally went yesterday only to be told I need a crown which I am having done next week so my anxiety levels are currently off the rails again due to absolute fear.

Now....... it is time to attend to my T3 levels to see if it will reduce my anxiety a little. I don't expect it to disappear altogether as it's been part of my daily life on and off for many many years now but I am not going to know am I unless I try?

My T3 levels have pretty much always been right at the bottom of the range for years as most of the regs will know so I need to attempt to up from my 10mcg. Obviously needs to be done low and slow as I can find it quite stimulating and my waking anxiety until late afternoon is crippling, so I currently take 5mcg with my Levo at around 8.30am and go back to sleep until around 11am and then my second 5mcg T3 at around 3pm.

So what would be the best way for me to increase and by how much? I was thinking of adding 2.5mcg initially to say my 3pm dose for around a week and then add another 2.5mcg maybe later in the day which would then put me on a daily dose of 15mcg Also have to take into account of keeping my doses well away from my AD and the small amounts of Diazepam I take throughout the day to cope and also my late night Magnesium.

Am assuming I should now leave my Levo dose where it is when I increase my T3?

It's been an absolutely horrendous year for me, with this damn Hashi's and fluctuating levels. Not one day have I felt even slightly well so some advice and comforting words and encouragement would be most welcome from my fellow sufferers

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Jefner
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16 Replies
TiggerMe profile image
TiggerMeAmbassador

Sorry to hear of your troubles but pleased the reduction has helped, yes hold steady with the T4 dose so only changing one thing at a time.

I'd be inclined to suggest adding the additional 2.5mcg to your morning dose as your cortisol is good at this time which will help with uptake and see how that feels, if it causes any undesirable effects try switching it to the afternoon dose... it's a case of small changes and wait and see

Jefner profile image
Jefner in reply toTiggerMe

thanks Tigger but tbh isn't 2.5mcg too tiny an increase or do you agree 2.5mcg for about a week then another 2.5 increase?

TiggerMe profile image
TiggerMeAmbassador in reply toJefner

2.5mg is quite a kick for some so it's a big enough addition and like you say give it time and you can always add the same again, much easier to go up slowly and more likely to find your sweet spot rather than large increases and then having to come back down

Jefner profile image
Jefner in reply toTiggerMe

having an extremely bad day today with the anxiety. I don't know whether it's because I added the 2.5mcg increase this morning with my 5mcg and it's too much for me or I am wondering now if part of it is because I haven't had any of my B vits for a 2-3 weeks and my B12 has dropped, as my anxiety has worsened over the last couple of weeks. I wanted to stop them for a while to see if there would be an improvement in my anxiety levels as I discovered recently they can be quite stimulating to a lot of people. someone mentioned that my B12 was too low in the range. I stopped taking my Bvits on a daily basis before the test and left around a week before I tested in early september. When I was taking them every day my B12 has always been over range on all tests. I am wondering by having stopped them completely recently whether my B12 has now unknowingly dropped too low in that short space of time and I ma paying for it.

I am also wondering whether to split dose my T3 from 2 doses to possibly 4 so I get a tiny bit every few hours?

TiggerMe profile image
TiggerMeAmbassador in reply toJefner

Could be worth trying the 2.5mcg before bed which some find gives a better nights sleep, maybe move the magnesium to an hour before?

Many of us swap to separate B12 and folate when stopping B complex for testing, looking back it certainly looks like yours drops off pretty quickly

Results when I have taken a few days break from B Complex before testing

April 2024.... Serum Folate 29.80 (8.83 - 60.8 nmol) - 3 days break

July 2024 ....Serum Folate 15.10 (8.83 - 60.8 nmol/) - approx. 1 week break

Jefner profile image
Jefner in reply toTiggerMe

i usually have my magnesium around 10-11pm before I go for my nightly walk (if my legs will carry me). Then when I go to bed around 2am I usually have 1mg Diazepam which helps me sleep if my anxiety hasn't worn off as it usually does around that time. Really need to get back on the Bvits at least 3 times a week but not sure whether to carry on with the Seeking Health one because I feel there is a certain dose of something in there that stimulates me but no idea which. This is the Seeking Health one I have been taking for years and doses prnt.sc/KiqdhoKpjYqu and on recommendation I purchased the Igennus one to try prnt.sc/W8Db30QDdQj0. Apparently Niacin can make anxiety worse but the Igennus one seems much lower than the Seeking Health one but wondering if there is enough B12 and Folate in it. I am so confused and at a total loss at the moment, am in a total mess and a little disappointed that only yourself replied to my post, it just feels like I am a nuisance on here tbh because not many reply anymore and I in my mentally confused state and being totally alone and isolated I maybe need a little more help than others who have family and friends to confide in. I kinda don't feel wanted on here anymore and feel I get the "oh no not her again" thing when I post because of past advice on my poor T3 levels that I didn't attend to, which was advised, but a lot don't understand the fear I feel about it. there is just so many things to consider and try and I just don't seem to be able to get any of it right. I got so obsessed with reading up on everything a few years back when I discovered I had hashi's and really didn't know anything about thyroid tbh, except take it and get on with things. So much to learn and my brain will not absorb anywhere near as much info now and there is too much to read so I now leave it all alone as it just overwhelms me

TiggerMe profile image
TiggerMeAmbassador in reply toJefner

So that B complex is very high in Niacin and low in B12 compared to Iggenus though with the same level of folate in both...

I like to think the others think I'm giving you good responses hence no need to intervene! I totally understand that being hypo and the anxiety it causes without support makes things extra tough... I've not read through your whole back story but I myself often find that looking back at my previous posts and responses is incredibly helpful... sound advice is always worth revisiting

We are here for everyone but as you well know there are a vast number of people needing help and we really try to get to everyone and encourage people to read through others posts which can be so helpful 🤗

Jefner profile image
Jefner in reply toTiggerMe

same folate levels in both? one says mcg and the other ug! I just assumed the ug of whatever that symbol is, is actually a lower amount than mcg or am I wrong?

The 50mcg B12 dose is in the Seeking Health brand that I have taken for years and taking that daily, as I did, always put my B12 over range on every result. As I discovered on here that BVits can be stimulating it was recommended that I have 2-3 a week rather than daily but I was looking to change to something different with lower levels of the others that might, and only might, be too stimulating at those doses and causing more anxiety. I am now wondering if I really need a full B complex and maybe just supplement B12 and Folate separately?

TiggerMe profile image
TiggerMeAmbassador in reply toJefner

mcg and ug are the same 🙃

This is a really useful comparison from Reg... healthunlocked.com/thyroidu...

Jefner profile image
Jefner in reply toTiggerMe

yes I saw that from another post but couldn't enlarge it to read it. If they are the same why not just use either mcg or ug ffs lol

helvella profile image
helvellaAdministrator in reply toJefner

Because...

Screenshot of measurements
TiggerMe profile image
TiggerMeAmbassador in reply toJefner

Scroll right to the bottom as Reg has added it as a reply so easier to enlarge 😅

Jefner profile image
Jefner in reply toTiggerMe

was just having a look through the B complex post and I see you did an OAT test with Regenerus a few months ago. I had mine done with them also via my then FD a few years back. Could do with another one but how did you manage to read your results to act on them?

TiggerMe profile image
TiggerMeAmbassador in reply toJefner

It is a massive black hole of discovery but this helps... drjockers.com/organic-acids...

Jefner profile image
Jefner in reply toJefner

going back to just taking B12 and Folate separately, I was thinking of getting the same dose that I have always had within my complex. I think the 50 would be sufficient in the B12 because as I mentioned previously all my previous results on that dose came back very high in the range, although some of those results might be slightly skewed because I never knew at that time to stop my Bvits for a few days before testing

2022 - still taking bvits when tested

Vitamin B12 H 704 145 - 569 pmol/L

Serum Folate 35.20 8.83 - 60.8 nmol/L

April 2024 - can't remember whether I was still taking Bvits before testing, think I left off them for 2 days

Serum Folate 29.80 8.83 - 60.8 nmol/L

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

July 2024 - stopped Bvits couple days before test

Serum Folate 15.10 8.83 - 60.8 nmol/L

* Active B12 94 37.5 - 150 pmol/L

September 2024 - stopped BVits several days before testing

Serum Folate 19.20 8.83 - 60.8 nmol/L

* Active B12 114 37.5 - 150 pmol/L

Looking at my results of when I remembered to stop taking them before testing there is quite a difference in levels between the first and last two tests so logically I am thinking the first two tests might not be that accurate due to still being in my system and the September results seem to give a better picture due to being off them for several days and to me clearly shows I need them because of the drop in being without for those few days. Am wondering if I stay on the same dose for both and take daily, it should be adequate for me or could my Folate levels be improved upon by taking a slightly higher dose than the 400ug that my body has been used to in my complex? Obviously I don't want to overdo it and take too much. That brand also does 1000ug in the Folate but that might be too much?

And then to balance all my B's I could take one of the complete complex say once a week? What do you think?

What dose do you take in both and can't remember whether you have hashi's or not?

Regenallotment profile image
RegenallotmentAmbassador in reply toJefner

I just went with what it says on the product labels 👍

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