The Long and Bumpy Road to Wellness: Hello... - Thyroid UK

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The Long and Bumpy Road to Wellness

Hurtlocker profile image
23 Replies

Hello friends and supporters..long winded post. I have not posted in a while as I have been v.busy getting all my vitamins optimal and feeling Pooh!to boot...had increase of levo to 92.5 l(100mic made Tsh high) so levo reduced by previous doc last July and been taking this at night to try to alleviate symptoms in day...dizziness.weakness and exhaustion and eye problem...did not really work.. so struggled on (covid takes priority)!!! Last year had two blood tests showing TSh going down but syptoms still the same... bloods in Nov 2020 showed TSH reducing but High T4 but T3 dragging along bottom of range...deficient in Vit D too.

(took high level Vit D supp from Doctor)recent bloods on 28th show...

VIT D 70nmol (50-75)

FERRATIN 83ng (12-250)

TSh 0.91mlu. (03-4.5)

T4 Serum 19pmol(10-22)

T3 Serum 3.9pmol(3.1-6.8)

B12 Optimal in Dec...not included on latest blood test

Recently had a colonoscopy to ascertain why I suddenly developed IBS.. the only thing they could find was little pouches of diverticulisis on bowel wall not extensive...

Think I am a poor converter of T4 to T3 !!!got a trial of T3

And have started it on 10mic per day taken in morning..so far so good ...eye problems a little better and energy has gone up...but I am terrified I am doing myself harm as present doctor has not even met me!never mind having a discussion with me on T3!! What do you all think...keep going on 10mic for 8 weeks and see how I am and then do battle about T3 prescription ( last one was private from previous doctor...bless him!!!)

Stay safe all and just keep going...

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Hurtlocker
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23 Replies
JAmanda profile image
JAmanda

I'd stick with it and see your levels and symptoms in 8 weeks.

SlowDragon profile image
SlowDragonAdministrator

Are you splitting T3 into 2 x 5mcg doses roughly 12 hours apart

Yes currently very poor conversion

Optimal vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better

How much vitamin D are you currently taking

Folate and ferritin at least half way through range

Serum B12 at least over 500

SlowDragon profile image
SlowDragonAdministrator

As you had RAI likely to benefit from strictly gluten free diet

Have you tried it?

Hurtlocker profile image
Hurtlocker in reply to SlowDragon

Hello again Slowdragon...just started gluten free diet and will work some more on vits..currently had to stop all because of IBS and because of colonoscopy ( nothing to interfere with results) so no vits for three weeks now...( doctor presribed Vit D caps 20.000 three times a week for three months but they made me feel quite sick so did take them but only twice a week!!will try splitting doses of T3 into 5mic doses...do I need empty stomach for T3!!!same as levo?? Let you know what happens...god!!!this is a long road is it not???

SlowDragon profile image
SlowDragonAdministrator in reply to Hurtlocker

Took me 28 years (most of it pre forum)

Would never have recovered without all knowledge on here (might find my profile helpful)

Personally I think vitamin D mouth spray is better and more effective

5000iu per day for 6-8 weeks instead of loading dose tablets

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

It’s trial and error what dose we need,

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

vitamind4all.org/letter.pdf

Hurtlocker profile image
Hurtlocker in reply to SlowDragon

Thank you for your reply on Vit D Have ordered on Amazon with K2...better for gut as you say...you must have had 28 years of pure hell!!!thank god for forum...

pennyannie profile image
pennyannie in reply to Hurtlocker

Hey there again Hurtlocker :

So if the above results are when on Levothyroxine these show poor conversion, which seems inevitable after having RAI thyroid ablation.

The accepted conversion ratio when on T4 only is said to be 1 - 3.50 - 4.50 : T3 / T4 : with most people preferring to around 4 or under :

so if we divide your T3 into your T4 we get 4.89 : so showing poor conversion :

and the logical answer is to rebalance - by dosing T3 and T4 thyroid hormones independently : there is room to increase T4 which in turn should increase your T3 but in all honesty I don't think this will be enough to make any real difference, and best option is to start with a small dose of T3 to bring your level up to an acceptable level for you, and hopefully to the relief of symptoms.

T3 is the active hormone that the body runs and is said to be about 4 times more powerful than T4 :

I read T3 has a short half life of around 8 hours and the logic is small top ups during the day - however other people take it all in one go : so there maybe a bump or two in this long and winding road, but at least you have been given a top up of premium petrol in your tank to help with the engine's smooth running.

You will still need to maintain optimal vitamins and minerals and I aim to keep a ferritin at around 100, folate at 20, active B12 70 + ( serum B12 500 + ) and vitamin D at 100:

When I added 6.25 ( a 1/4 tablet ) of T3 - Liothyronine to my 100 T4 at 3 in the morning I woke up relaxed, happy and with no heavy headiness. It was as though a light switched had turned itself on and that my pilot light had been reinstated.

I couldn't stay on T3 long as I couldn't source the identical same T3 , and since the bulk alternative of T3 I purchased, didn't suit me. I switched to trialling Natural Desiccated Thyroid.

So, onwards and upwards - I hope this works for you, and it will be a little bit of trial and error as we are all different and coming at this with different issues.

As you may remember I've moved on to self medicating with full spectrum thyroid hormone replacement and am feeling much better.

Hurtlocker profile image
Hurtlocker in reply to pennyannie

Hello again pennyannie...thank you for your valuable input..have ordered Better You vit D mouth spray with K2 to avoid poor absorption via gut...also taking B12 spray already.. will split doses of T3 -5mic .am and pm ...do I need empty stomach or ok with afternoon tea,!!! Premium petrol in tank now I think...I hope!!! Thankyou for your help again...what would we do without forum members...regards..

pennyannie profile image
pennyannie in reply to Hurtlocker

As for afternoon tea I've read some endo's suggest taking T3 with food to eliminate any spike in meds you may experience - I took mine on an empty stomach at 3 in the morning along with my T4 : and went back to sleep waking around 4 hours later

I read meds should be 2 hours after or an hour before food - make of it what you will :

All you can do is try and see what suits you best.

Hurtlocker profile image
Hurtlocker in reply to pennyannie

Thanks for your views...just going to split doses starting tomorrow...try on empty stomach am and after tea and a biscuit pm but well before taking levo!!!will let you know!!!the bumpy road continues ha!!! Regards.

pennyannie profile image
pennyannie in reply to Hurtlocker

When do you take your Levo ?

T4 is a storage hormone and not " fast acting " like T3 - Liothyronine.

Hurtlocker profile image
Hurtlocker in reply to pennyannie

Take all levo before bed ...around 9.30...cant stay awake any longer!!!

Hurtlocker profile image
Hurtlocker in reply to pennyannie

Hi Pennyannie...need your advice again..as you know I started taking T310mic per day..this is my third week and since last week increasingly felt unwell...a bit overdosed syptoms actually...

headach.tiredness.achy muscles and unsteady on my feet ..seem to run out if steam at lunch time i.e.1pm.. like the duracel rabbit!!!@taking 10mic in morning and tempted to take 5mic am.then and 2.5 in afternoon split (take my levo at night well away from food or anything else 75mic one day plus 25mic extra tablet every other day)...maybe 10mic T3all at once is too much as I know T3 is v.powerful..what do you think ?? cant ask doctor as covid taking precedence over everything...

regards

June

pennyannie profile image
pennyannie in reply to Hurtlocker

Hey there June :

It's difficult isn't it ;

My experience of T3 was feeling as though I was a bit turbo charged and I too ran out of steam by around lunch time.

I was taking 6.25 mcg T3 at around 6.00 am along with 100 mcg T4 :

If I switched back to a T3/T4 combo I would split my T3 dose and take at least 2 doses around 8 hours apart.

So yes, I think your suggestion to take 5mcg in the morning and the balance in the afternoon sensible and just see if that evens out that " surge/rush/crash " scenario :

i read some people suggest you take T3 with food if you experience " spikes ' ?

However those symptoms you describe could be a mix of hypo/hyper symptoms - so it gets a bit confusing :

I would also consider cutting that 25mcg T4 tablet into half and then take the same dose every day and even out your T4 dose to 87.50 every day - worth a thought ?

Keeping vitamins and minerals optimal is still a constant, and now I take Natural Desiccated Thyroid and into my third year of self medicating and just have a yearly private blood test more to see where my ferritin, folate, B12 and vitamin D sit in the ranges than anything else.

Hurtlocker profile image
Hurtlocker in reply to pennyannie

Hi pennyannie...thanks for your adviceHave already been evening out T4 by taking half tablet each day

..about to do same with T3 i.e 5mic a.m and a 25mic dose at lunchtime and see how I go... got Better You vitamin

Sprays B12 and VitD k2..also eat quite a bit of pate for Iron etc.rayher than take oral suppliment...it makes me sick...God I am boggled by it all.!!!,but determination to get there drives me on!!!will let you know...

Regards June

pennyannie profile image
pennyannie in reply to Hurtlocker

Is it spot the typo day ? hope it is and you meant - 2.50 mcg T3 in the afternoon -

You might need to look at that and given time increase pm to the same dose as am -

guess it all depends on your overall need and responsibilities to get through the day.

Hurtlocker profile image
Hurtlocker in reply to pennyannie

You are dead right...spot the typo day...I did mean 2.50mic in the afternoon...Gawd!!!my fingers wont even do what I tell them!!what hope for everything

else!!!keep you informed

Regards. June

Hurtlocker profile image
Hurtlocker in reply to pennyannie

Well as promised Have just had my blood test results as of yesterday after starting T3 supplimentation in Jan..Started on 10 mic but felt ill and reduced to 5mic per day...still felt bad and reduced to 2.5mic am only...bloods

yesterday read:-

Vit D. 61nmol (50-75)

TSH 0.13 mlu/L (0.3-4.5)

Abnormal...

FT3 4.0 pmol/L (3.1-6.8)

FT4 17.6pmol/L (10-22)

Scared to do anything with it...just staying on levo 87.2.5pm and T3. at 2.5 per day am. Please tell me I am not killing myself..cant speak to doc until next week!!!

pennyannie profile image
pennyannie in reply to Hurtlocker

Hey there

Can I suggest you start a new post with these results.

You owe it to yourself to hear from all form members now - and not just me - I'm flattered by currently with a migrane and need to sleep for bit :

In the meantime start a new post with these results and I'll chip in when my vision isn't all over the place.

Hurtlocker profile image
Hurtlocker in reply to pennyannie

Hope you feel better soon.!!!

pennyannie profile image
pennyannie in reply to Hurtlocker

Hey there :

I didn't sleep much last night due to those gale force winds, but anyway, can't sleep now so, here goes.

So, I don't think 2.50 mcg T3 will be doing much at all - I'd think 2 x 5 mcg a better

option but it reads as though it's not going well at all :

Your T4 needs to go up a bit - it's currently just under 70 % through the range and it's generally recommended that this needs to be in the upper quadrant so over 75% :

Your T3 is much too low at just around 25% through the range :

The TSH is below range but this is the least important of the three thyroid numbers and taking any form of T3 will lower a TSH reading - it's just what it does :

These results aren't " abnormal " just not very good : I think after RAI we are abnormal anyway as our bloods are only part of the issue, but no one listens :

My T3 came in at 25% first time it was ever tested - some 12 years since RAI - but my T4 was at 100% - what a farce it all is : My TSH was and is at 0.01 and stuck :

Was this a fasting blood test and no medication for 24 hours ?

I think first get your T4 up a little higher and then look to add 2 x 5mcg T3 - but you do need optimal vitamins and minerals before starting trialling T3 as it is powerful and you need to be sure your core strength is stable and able to support you.

How are your ferritin, folate, B12 and vitamin D - I now know I need ferritin and vitamin D at around 100 with active B12 at 70 + and folate at around 20 :

I'm still thinking but hopefully helped a little bit :

It's generally accepted, that after RAI thyroid ablation, people do seem to do better on a T3/T4 combo or prefer Natural Desiccated Thyroid which is what I've ended up taking - but of course, I'm having to do it for myself.

Hurtlocker profile image
Hurtlocker

Thanks for your reply to my horror story!!! Blood tests taken on empty stomach and no medication for 12 hours i.e night before test..will try taking more T3 as had to reduce Levo last year as TSH shot up to 6.9!!!levo reduced to 75 mic tabs plus 2.25 every day..rather than alternate days 25mic..vits..taking B12 ...VitD spray..folate was v.good at last test..started taking T3 in Jan...think maybe I take extra 2.50at midday...see what happens...god!!! this is hit and miss isnt it... thanks for your input..hope the headache goes.. regardsJune

pennyannie profile image
pennyannie in reply to Hurtlocker

Hey there June :

Thank you - I think I need a good night's sleep - let's hope we all get that :

When TSH goes up it means you need more medication - not less :

Try not to alternatate anything - low and consistent doses suits us better :

Need the numbers and ranges of the ferritin, folate, B12 and vitamin D - as no thyroid hormone replacement works well if these core strength vits and minerals aren't maintained at optimal levels :

Before I started self medicating with T3 I built up my core strength and now try to maintain same with ferritin and vitamin D at around 100, active B12 at 70 + and folate at around 20.

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