Advice on Levo & T3 please

[Citrinesun]

Hi everyone,

I have only just realised it's been over a year since I last posted here.

I am looking for some help with going forward with my meds. Since my last post I had a few more tests and have been tweaking my Levo and aiming to up my ferritin and vit's but still had symptoms and palpitations.

I upped to 75mcg then 75mcg/100mcg on alternate days as was still struggling with the slow brain and weight gain.

I had a MMH test done in October, (8.45am)

Serum TSH - 2.52 mu/L – Range (0.27 – 4.2 mu/L)

Serum Free T4 - 16.6 pmol/L – Range (12-22 pmol/L)

Serum Free T3 - 4.4 pmol/L - Range (3.1 – 6.8 pmol/L)

This is where I saw my T3 was struggling, so after discussing with my GP I went to 100mcg daily. Felt ok for a few weeks then back to symptomatic & strong palps so had bloods done with my surgery:

January 2022 (08.45am)

Serum TSH - 0.78 mu/L Range – (0.27 – 4.2 mu/L

Serum T4 - 18.1 pmol/L – Range – (9.00-24.00 pmol/L)

Discussed upping Levo with GP she reluctantly agreed for me to try obviously she is looking at my TSH but I felt I had room for T4 knowing how low T3 was back in October.

Anyway, I didn’t tolerate 125mg very well felt dizzy and agitated so then went back to 100mcg.

Every time I try to up the Levo to either 112.5mg or 125mcg I feel bad and get the pounding palpitations even worse. I don’t feel like I can pass the 100mcg mark.

So fast forward to June this year I had bloods done again both NHS and MMH, have problems getting blood from me which is not unusual so had some messing around but they managed to get enough to fill my MMH tube lol, then had to go to hospital for blood draw after 2nd attempt at my surgery so my NHS results show different but it was 10am by this time.

June 2022 - MMH - 08.30am

Serum TSH 0.7 mu/L – Range (0.27 – 4.2 mu/L)

Serum Free T4 - 17.6 pmol/L – Range (12 – 22 pmol/L)

Serum Free T3 3.6 pmol/L - Range (3.1 – 6.8 pmol/L

NHS results 1-week later (Bloods were 10am due to issues with getting blood from me)

Serum TSH - 0.64 mu/L Range - (0.20 – 5mu/L)

Serum T4 - 20.9 pmol/L – Range (9.00 – 24.00pmol/L)

Vitamins June 2022

Serum Folate – 9.7 ug/L (3.90 – 20.00ug/L)

Serum B12 – 477 ng/L (197 -771.00ng)

Serum Ferritin 45 ug/l (15.00 – 150.00ug/L)

Vitamin D3 – 73.3 nmol/L (march 22 results)

So, seeing that my T3 had actually dropped since October horrified me, I know I have a conversion issue.

I sourced T3 myself (Tiromel 25mcg) I told my GP what my T3 results were and I began to take half of 6.25mcg but not easy to split so small. I stuck with it for 3 weeks. Didn’t feel much so upped to the 6.25mcg on week 4 – felt some improvement. GP was actually supportive and understood that if I didn’t feel I needed it I wouldn’t have sourced it myself. She has referred me to endo but appointment probably won’t be until after xmas.

I just can’t carry on feeling like this. I’m unsure if Levo has ever made me feel better if I am honest.

I had been scatty with taking my b complex but after my new bloods in a couple weeks I will be back to it. I had gotten my b12 up to over 600 but it dropped again due to not taking the b complex, It seems I will always struggle with folate, it improved with the supplement but it drops very low without so I know I need to be consistent with my B’s.

I take throne Selenium and I have tried no gluten; I don’t feel that is the issue, I now stick to a reduced gluten diet so occasionally consume gluten because I can cope with that & I notice no effects.

I’m currently taking 12.5mcg T3 and 100mcg Levo in the morning, my resting heart rate and palps seem to have improved still occasionally up and down, but what concerns me is still I am getting this intense fatigue - brain slowing down feeling, usually by about 3pm sometimes early evening, it really is difficult for me to function I start slurring my words and I can’t think properly, It’s the same feeling I had before I was diagnosed and it keeps coming back no matter what I seem to do tweaking Levo and now T3 in the mix.

I’m wondering if anyone can please guide me on what to do now? I’m thinking I could add another 6.25mg and maybe reduce Levo to 75mg?

My GP advised to go by my symptoms and obviously I have symptoms but I’m unsure which way to go. I’m booked in for bloods in 2 weeks so maybe I should wait and see where I am currently at but I have a feeling T3 will still be low and until then my brain is mush.

I have gone as far getting an ancestry DNA test done just so I can get the raw data to upload to mthfr-genetics to see if I have the DIO2 gene.

My last ultrasound shown I now have atrophic thyroid, last year it was normal size, so I think I have Ord’s and not Hashimoto’s, also have U2 nodules. Have had lots of throat & voice issues but I think it’s a result of when I’m getting attacked if that makes sense.

I am grateful for any advice, thank you.

[SeasideSusie Remembering]

Citrinesun

I would retest 8 weeks after increasing T3 to 12.5mcg to see where your levels now lie. I would also split your T3 into 2 x 6.25mcg doses and take the second dose in the afternoon to see if that helps with your slump.

When you next test remember that last dose of Levo should be 24 hours before test and last dose of T3 should be 8-12 hours before test, so you could take your first 6.25mcg T3 with your Levo 24 hours before test, and move the second 6.25mcg T3 to late evening so that it's 8-12 hours before test.

As for your vitamins:

Serum Folate – 9.7 ug/L (3.90 – 20.00ug/L)

Serum B12 – 477 ng/L (197 -771.00ng)

Definitely take your B Complex regularly but remember to leave off for 3-7 days before any blood test. You need to improve both of these results.

Serum Ferritin 45 ug/l (15.00 – 150.00ug/L)

This needs improving to at least half way through range (around 82) although some experts say that the optimal level for thyroid function is 90-110ug/L.

Vitamin D3 – 73.3 nmol/L (march 22 results)

Could be improved as the Vit D Council, Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health quoting a study recommending at least 125nmol/L. Do you supplement for this?

[Citrinesun in reply to SeasideSusie]

Thank you SeasideSusie for your help,

Yes it will about the right time to do bloods in 2 weeks so I won't add anything until I know my results.

I will do what you suggest splitting to 6.25mg twice daily instead.

I did attempt this a few weeks ago but I was taking the 2nd dose too late at night so the afternoon suggestion makes more sense.

Yes I am familiar with grassroots my dose guidance is from there since I was insufficient.

My vit d was only 37.6 nmol/L last February so its going in the right direction. I take 20.000iu once a week, hux capsules and a separate k2 mk7 but i have been forgetting to take d3 every Saturday as its weekly, so I'm going to start setting an alarm to remind me. The spray is too expensive in the long term so I like the hux capsules.

I'm certain my b's will improve I will start the b complex again for a week and stop a week before bloods.

Ferritin is slowly climbing, I know it's rubbish atm but I was very happy to see I have managed to double what little I had

😆 I have been taking easy iron couple times a week and trying to eat more red meat, I tried liver and I just can't deal with it. Once I finish the pack I will take spa tone.

Thanks for the advice re T3 timing before bloods, I will write that down

😇

[SeasideSusie Remembering in reply to Citrinesun]

Citrinesun

Are you also taking magnesium, another important cofactor of D3? Magnesium helps the body convert D3 into it's usable form.

[Citrinesun in reply to SeasideSusie]

Oh yes another thing I forgot about, argh so much stress I've had. Its been so overwhelming to get back in to the routine or even remember the routine with my brain.

So I have a huge tub of magnacalm the citrate powder, used to take it religiously before bed.. probably because I'm get the slow brain thing its gone from my mind at night time, but yes will pop it by the kettle so i'll remember to take that.

Thank you

[FancyPants54 in reply to Citrinesun]

It takes 2-3 hours from taking T3 to the dose amount reaching peak point. So work out when your slump starts and time your second dose 2 hours before it to start with and see if it helps. But obviously adjust that to much later on the day before the test, as SeasideSusie has explained.

With T3 you have a roughly 2 hour increase, 2 hours at peak, 2 hours down. That's a bit simplistic because the second dose will build on the first of the day, but it's a good thing to keep in mind to help you find the best place to take a later dose.

[Citrinesun in reply to FancyPants54]

Thank you FancyPants,

I didn't know about the 2 hr thing.

I will certainly try this out, I've been taking 6.25mcg very early morning with levo, then the other half early evening or late afternoon, when I notice I'm struggling, which reminds me to take it.

I think maybe 2pm depending on how early I have taken it that day.

Oh yes I'll remember to change the time on Sunday night, thank you for help.

🙂

[FancyPants54 in reply to Citrinesun]

I think it better to keep the dose times the same. No adjustment for weekends etc as it might be negative to the effect. So I take my doses using the alarms on my watch. If I think things aren't right, I make a choice as to which dose time I am going to try altering and then make notes over the next week or two. Our body runs on rhythms. It's confusing if we take our doses of T3 at different times. It then takes time for the body to alter the rhythm to fit, so you are a bit all over the place if you keep changing them.

[Citrinesun in reply to FancyPants54]

Thank you for your advice.I understand what you mean.

Sometimes I might not wake up as early to take it, but rarely.

I am quite consistent with the morning s now, it's the afternoon dose I'm having to remember to take on time since I've now starting to take earlier than I was, but I'm going to start setting alarms once my bloods are back this week.

I think I will need to drop back a little t4 and maybe a 3rd T3 dose but we'll see what bloods say.

It's so difficult to tell what's causing the tiredness with this heat it's really wiping me out, I cannot wait for a good thunderstorm..

[FancyPants54 in reply to Citrinesun]

Alarms are essential. I used to manage my various medication doses using my phone alarms. But I bought an Apple Watch and now they are all on there and it works like a dream. I take my first thyroid med dose at 7am and go straight back to sleep until I'm ready to wake up properly.

[Citrinesun in reply to FancyPants54]

I know I'm realising how essential alarms are lately with all the vitamins and essentials aswel as thyroid meds. I was always very good at remembering things like the pill years ago but now I have so many things it's a right chore.

Funnily enough I have a Garmin watch but I have never once used the alarm on it

😂 Totally forgot that watches are meant to do that.. lol.I stopped sleeping with it on coz I sometimes lay on it and it was annoying.

I guess I am just used to using my phone,

I found a good app called "did I take my meds" (DITMM) been fab this past couple days getting my afternoon T3 dose and my b's at lunchtime.

Will attempt to upload a screenshot Incase anyone finds it helpful.

I do exactly the same as you wake up take levo & first T3 then back to sleep.. unless I have to be up but I like a coffee in morning so I always take first meds very early just to be safe.

😇

Screenshot of "Did I take my meds. " Medication monitoring & reminder app

[SlowDragon Administrator]

Comment by SeasideSusie

I would retest 8 weeks after increasing T3 to 12.5mcg to see where your levels now lie. I would also split your T3 into 2 x 6.25mcg doses and take the second dose in the afternoon to see if that helps with your slump.

Agree absolutely with this

You might also consider splitting levothyroxine in to smaller doses too …..50mcg waking and 50mcg at bedtime

Which brand of levothyroxine are you currently taking

Do you always get same brand

Do you wear a Fitbit or equivalent that can record printable record of resting heart rate

[Citrinesun in reply to SlowDragon]

I actually hadn't even considered splitting the levo dose.I will try this splitting both from tomorrow thank you, I do take a sleeping tablet though so should it be 2 hrs away?

Yes I have a garmin watch. My Resting HR is usually about 73 give or take a little but some days its constantly fast beenike that for a good while.

my pulse is currently 109 and I am not even moving around.

I Haven't slept with it on for a while as it was bugging me but I can start again with that

I take mercury brand, & i am ok with Wockhardt if i need the 25's

They gave me aristo a while back & I thought because its German it will be great but no it didn't agree with me at all, I always ask for mercury now.

[SlowDragon Administrator in reply to Citrinesun]

Yes will need to take levothyroxine away from sleeping pills….ideally 2 hours before…..might get away with an hour

[Citrinesun in reply to SlowDragon]

Thanks SlowDragon, I thought so, I will try work it around 2 hrs just to be on the safeside 😇

[Omze]

Levo will make U great at 125 ug , as I am not seeing doubling of ferritin when u touch the actual body dose , u can also get injectable iron to increase the ferritin but do it with increase in t4 I.e 125

[helvella in reply to Omze]

Many people do NOT feel good on levothyroxine alone. Regardless their dose. I don't think that telling someone a specific dose "will make U great" is based on science, medicine or the individual.

Injectable iron is, pretty much, a hospital-only treatment in the UK. It is unclear how you meant them to be obtained?

[Omze in reply to helvella]

U r absolutely right , injectable iron in UK requires hospital detention , but without increasing your iron , ferritin won't be raised , taking iron tablets in hypothyroid patients , who are not on correct dosage of thyroxine will require a very long time to attain a suitable ferritin level . When u increase ur thyroxine ur ferritin lags behind and inturn activates the hormone cortisol so patients feel worse after few days of increase dosage and return to old dose.

[Citrinesun in reply to Omze]

Unfortunately I have tried for a while to get on to 125mcg it just doesn't agree with me at all. I wish it would make me great, lol.

I definitely need the added T3, I don't feel as bad with t3 added to 100mcg, just the extreme tiredness coming back but Its gonna take a while to work out what works for me.

Like Helvella says not everyone does well on levo alone.

I get what you mean with the ferritin but my gp is not concerned with my ferritin as my last iron panel wasn't a worry for them so they will not just give me infusions.

They just said it won't hurt to supplement so that is what I'm doing it does take a while I know, but it is what it is I guess.

[Cup-cake7 in reply to Citrinesun]

Hi just to mention but do check, vit A and C help you absorb iron Also I took homeopathic ferritin when I was pregnant alongside carrots! and level normalised

Liver pate can be kinder maybe

[Citrinesun in reply to Cup-cake7]

Ah yes I do always take vit c with iron, but I never gave vit A much thought tbh, amazing idea taking with carrots thank you.

Yeh tried I liver pate too, not as bad but it's still the lingering aftertaste it just yuk

🤢

[Cup-cake7 in reply to Citrinesun]

Same lol but it’s not so bad…I was pregnant & like a donkey craving carrots. Midwife knew I was anaemic said it’s probably vit A needed to absorb iron. Nature at its best haha I had them in my bag constantly couldn't go anywhere without them

Good for eyes!!!! The old saying about seeing in dark

[helvella in reply to Cup-cake7]

In hypothyroidism our ability to convert the beta-carotene in carrots into the active forms of vitamin A are impaired.

This is one of the reasons some of us get Carotenemia (also called Carotenoderma or Carotenosis) when hypothyroid - skin going yellow/orange. (But be careful not to confuse with jaundice.)

There is specific mention of thyroid in this professional resource:

What is carotenoderma?

Carotenoderma is the yellow-orange discolouration of the skin due to carotenaemia (American spelling: carotenemia), a condition in which the blood level of β-carotene is elevated above the normal range.

dermnetnz.org/topics/carote...

For that reason, carrots might not provide enough vitamin A to affect iron absorption.

[Cup-cake7 in reply to helvella]

Thankyou lots for this. My carrot days were 35yrs ago so hopefully I was a bit more able then. And this may be why I have had cataracts relatively young!? It’s sad when you are thinking you are doing right thing to find you are not. Il read link after work hoping it helps you with how to absorb it I’m keen to keep eyes healthy and bought eye vits with the legit….. ingredient in it do you know if it’s good ?

Il check that name later

Thanks

[helvella in reply to Cup-cake7]

Have to get Shakespeare to rewrite...

"My salad days, / When I was green in judgment, cold in blood/To say as I said then!"

AS

"My carrot days, / When I was orange in judgment, cold in blood/To say as I said then!"

[Citrinesun in reply to helvella]

That is really interesting Helvella,

My skin is more the colour of an uncooked chip so I don't have carotenoderma I never get any colour in me lol apart from rosy cheeks, but still very interesting stuff I don't eat carrots often but I do like them.

So would taking an active form of vit A be the answer? I guess like the B's and selenium we need the active forms of everything?

[helvella in reply to Citrinesun]

Yes - so-called preformed vitamin A would be an answer.

The problem is that excess vitamin A is a serious issue. People can get that from eating too much meat, especially liver.

Have a look here:

Although this is a USA site, I find that the Office of Dietary Supplements produces some good information sheets. They provide a consumer version which should be good for many people, as well as a professional version which can be thought of as an advanced version with more detail.

Vitamin A and Carotenoids

Fact Sheet for Consumers

ods.od.nih.gov/factsheets/V...

Vitamin A and Carotenoids

Fact Sheet for Health Professionals

ods.od.nih.gov/factsheets/V...

Sadly, the NHS versions of these documents (across most vitamins and supplements) tend to be very short and over-simplified.

Vitamin A - Vitamins and minerals

nhs.uk/conditions/vitamins-...

[Citrinesun in reply to helvella]

Thank you that's very helpful.

I am aware of Vitamin A toxicity,

I learnt about it when trying to suss out what to feed my fussy cat that wasn't full of grains and junk lol.

He gets freeze dried beef liver treats occasionally so I watch his Vitamin A intake.

Next lifetime I might be a cat and then I can have a fussy mum do all the working out for me

😺

I have been splitting my T3 since the day after I made this post, but I'm still getting the late afternoon slump, its shocking how I can barely speak.

Hopefully bloods next week will give me some idea of the next step.

[Cup-cake7 in reply to helvella]

Haha 😁

The 2 Ingredients says good for eye health

Lutein and Zeaxanthin. To help macula prevention.

Do you know of any other support please Helvella?

[Citrinesun in reply to Cup-cake7]

Haha that made me laugh,

I can't imagine having carrots in my bag, at least it was a healthy craving 😆

[Cup-cake7 in reply to Citrinesun]

And on bedside 🤦‍♀️😁. These days it greatly depends on the soils tooI really hope to get A levels right. Will it be to get near top of range🤔

Plus you can but a carrot tablet

Probably many good vit A veg il Google. Also il re look up the homeopathic help I got when anaemic. They said it would aid absorbtion I was at 8 which was low at the time and 12 wks later a 13!

[Cup-cake7 in reply to Citrinesun]

Hormones aye!! 😂. Yeah could have been worse. You heard of coal and similar. Maybe it was nature wanting minerals😊. Mind you I adored smell of creosote too. Stood at the road works inhaling 😂 ……you can cross now live, no im fine lololol

[Cup-cake7 in reply to Cup-cake7]

‘Love’

[Citrinesun in reply to Cup-cake7]

😂 I do love the smell of fresh tarmac and petrol.. always have done, I don't know why lol.Sitting in bed munching on carrots

😆 it's clever how our body craves what we actually need although we might not know we need it..

Yeah my mum told me my nana craved coal

😲That is good the homeopathic remedy worked for you.

I've tried homeopathy it was very expensive and didn't work for me, but it wasn't for the same reason as you

🤗

[Cup-cake7 in reply to Citrinesun]

Yes. Body so intelligent if listen. Intuition often right lol.. unless things like sugar confuse issue ! Funny though you can be thirsty but mistake it for hunger🤔Did she actually eat coal? Good teeth to eat it I guess 😊

Nature at its best i guess

Well understand re homeopathy my proof came with horrid years of skin condition. Sore red itchy then would crack etc. I gave up with nhs when they said it was nickel allergy……luckily sore honeopathic ad so went in desperation after yrs of it, £6 then. Gave pulsatilla and it came out badly then never had it again…..turned for support again after pre eclampsia with my first…. I was scared it would happen with the second and bp swelling started but they got it down enough to get to due date then I just used it all through bringing you my 3, no antibiotics which I saved in case of a real emergency. Sadly the homeopaths retired back to Greece I’ve not had particular success since

Sorry rambling. X

[Citrinesun in reply to Cup-cake7]

Wow what an interesting journey come to think of it I still have some ACTH I was given, I would still try it if my adrenals are out of whack.My cortisol test went missing from the hospital somehow the results never came,

the endo might run cortisol tests, when ever that will be.

But yeh it's typical of the symptoms to worsen before it resolves, I had a friend who sworn by homeopathy.

No I don't think she ate it, but sucked on it instead lol.

Weird stuff.

I heard it was quite common in my nanas era, maybe they all needed the minerals and their babies would have needed them too.

😇

[Cup-cake7 in reply to Citrinesun]

I guess so 😊 they used all sorts of herbs too which can be in modern medicine too even the whacky ones look at rat poison 😊🤦‍♀️

Frustrating results missing my bloods have done that

Yeah the structure of homeopathy is quite weird as such a teeny drop in a sugar tablet basis of like treats like which is a muchness with vaccines I guess

[Cup-cake7 in reply to Citrinesun]

Ps. Yes Petrol and tarmac. It’s strange I’ve had success homeopathically with first aid remedies particularly belladonna & bryonia. I got remedies in from Helios for the regular covid symptoms , who are great if I’m allowed to say It felt reassuring anyway and was important to keep it away from chest area with Delta, first one. Unsure I actually had it as no tests then as was early on but I could then take for each symptom with what was posted out to me which really seemed to help at that time.

Would like to know the right constitutional remedy but yes, it’s dear to go for full consultations