So excited šŸ¤©: Taken just over 2yrs of asking and... - Thyroid UK

Thyroid UK

137,771 members ā€¢ 161,562 posts

So excited šŸ¤©

HollieBerry profile image
ā€¢23 Replies

Taken just over 2yrs of asking and a LOT of hurdles.. but finally! I have a 3mth trial or Liothyronine.

Can anyone offer advice to make the best of this trial please? Only yesterday I ordered some vitamin D but Iā€™m assuming I should hold off on starting that now?

Iā€™m also taking ferrous sulphate as prescribed by the docs, do I continue taking this? They havenā€™t advised.

Written by
HollieBerry profile image
HollieBerry
To view profiles and participate in discussions please or .
Read more about...
23 Replies
ā€¢
SlowDragon profile image
SlowDragonAdministrator

Well done

Ideally BEFORE starting on T3 we need OPTIMAL Vitamin Levels

When were vitamin D, folate, ferritin and B12 last tested

You say only just been prescribed vitamin D

How low was result?

How much vitamin D are you currently taking

When was ferritin last tested

As you have Hashimotoā€™s are you on strictly gluten free diet

What were most recent TSH, Ft4 and Ft3 results

Depending on what Ft4 result was, depends on wether you need to reduce levothyroxine dose when starting T3

What has endocrinologist said?

HollieBerry profile image
HollieBerry in reply to SlowDragon

The endocrinologist just attached the prescription to a letter saying start T3 at 10ug twice a day and reduce T4 to 50 (currently on 125) then go for blood test in 6wks.

My bloods were last done Sept 2020 -

Serum B12 - 285 (180-640)

Vitamin D3 - 68.4 (>50.00)

Serum ferritin - 29 (28.00-200.00)

TSH - 0.54 (0.30-4.20)

FT3 - 4.5 (3.10-6.80)

FT4 - 17.8 (11.00-22.00)

I wasnā€™t actually prescribed Vit D. Just bought them off my own back. I just felt so lousy and wasnā€™t expecting to hear back from this T3 request for quite a while longer!

Looking at those results makes me feel a bit silly... the thyroid levels donā€™t seem so bad?? Theyā€™ve been worse thatā€™s for sure.

All I know is Iā€™ve got a brain like absolute mush, poor digestion, Iā€™m always tired, muscles and joints constantly hurt and Iā€™ve put on 2stone this year (possibly lockdown pounds) lol

SeasideSusie profile image
SeasideSusieRemembering in reply to HollieBerry

CrazySexyFool

FT4 - 17.8 (11.00-22.00)

The endocrinologist just attached the prescription to a letter saying start T3 at 10ug twice a day and reduce T4 to 50 (currently on 125)

WHAT!!!!!!!! Stupid endo, it's s/he who is a crazy fool.

Your FT4 is only 54.55% through range. It will be madness to reduce your Levo. Adding T3 is going to reduce your FT4 level anyway, that's just what it does, so by reducing your dose of leave to less than half of what is was is sheer madness, your FT4 level will plummet and probably end up near the bottom of it's range and you could feel really unwell with a low FT4 regardless of your FT3 level. Slow and gradual changes are what is needed not massive decreases like that.

Also, your Ferritin and B12 levels are very low and we should have optimal nutrient levels before adding T3, and that would be Ferritin half way through range (114 with your range) and B12 should be at the top of it's range.

Lotika profile image
Lotika

I just wanted to say congratulations and well done for keeping on keeping on :) I am on a 3 month NHS trial too. Personally, I think everyone should be taking vit D this time of year, thyroid issues or otherwise! Iā€™m no expert on anything, but I would have thought you should continue with your other prescriptions.

Did they make any change to your levo dosage, assuming you are on it too?

SlowDragon profile image
SlowDragonAdministrator in reply to Lotika

Government advice is that everyone in U.K. should take vitamin D October to April as absolute minimum

HollieBerry profile image
HollieBerry in reply to Lotika

Ahh thanks Lotika! How are you getting on with your trial? Have they asked you to log your symptoms? They havenā€™t asked me to... which I thinkā€™s pretty poor. Because trials should be recorded for efficiency and add to research stats! (in my humble opinion)

They said to reduce my T4 from 125 to 50 x

Lotika profile image
Lotika in reply to HollieBerry

They didnā€™t ask me to log my symptoms but I have been journaling them. And Iā€™ve been posting here a bit too as it is interesting to see peopleā€™s responses. In my case (day 19 now) as soon as they told me the dose I thought mmm, thatā€™s a massive cut in T4 and felt worried.

First, I noticed the cut in T4; I would feel like I hit a brick wall late afternoon / early evening. This is pretty common I have since learned. I still do most days but it is not quite so pronounced as it was to begin with. My joint and muscle ache has lessened considerably . Iā€™ve not done any exercise and would usually be in agony from lockdown inactivity but I am not at all - better than I have been in years with no weightlifting, no walking, no yoga; all the things I had to do to get a tiny bit if respite before. Also, the vague depressive miasma has lifted and I feel generally happier, so lots of positives. And on days 8/9 I felt pretty good - in fact, I thought ā€œthis is it - yippee!ā€ But then I felt pretty dizzy on days 10 and 11 and then back to how I felt to begin with! On the negative side, I feel pretty lethargic from the big drop in T4 and was very down about it yesterday... So, I do feel that T3 is for me, but that the current dosage either needs more time to sort itself out (hereā€™s to hoping) or the balance between T4/T3 needs adjusting.

Initially I found I was struggling with when to take the tablets and asked about it. I decided to take T3 with T4 first thing in the morning and then my last dose of T3 at bedtime. There are mixed reports about how T3 makes people feel at bedtime. Some say it helps them sleep and some say it keeps them awake. Bedtime is convenient and it doesnā€™t keep me awake, so all good there! I take my vitamins at lunchtime so that they are adequately spaced from thyroid meds. And embarrassingly (because it makes me feel so darned old!) I invested in one of those pill organisers!

I saw a quote in The Times this morning, ā€œthings get worse before they start to get betterā€ or words to that effect. It would sum up my experience so far! But, we are on the final leg of the journey, I think... we have our grubby mitts on T3 and now we just need to work out our best dosage.

My plan is to test privately when I get to 6 weeks, get some advice from other posters on the results and then share results with the NHS and badger for a dose change accordingly, assuming that this dose doesnā€™t settle itself down into the right dose! I basically donā€™t want to get railroaded by them into another dose change Iā€™m not sure about, so Iā€™m trying to take as much control over that as I can. I honestly think I could use a touch more T4, but we shall see!

Fingers crossed for you! I hope I havenā€™t put you off at all - itā€™s mainly a great thing for me, or will be, itā€™s just that the lethargy and fogginess is a bit frustrating for the time being. I have gone all GF and DF since the new year. I think the latter seems to help with the joint pain, as I slipped up and had a latte yesterday and ached afterwards! Arguably, I shouldnā€™t be running concurrent experiments, mind! I just wanted to give it the best shot, like you!

HollieBerry profile image
HollieBerry in reply to Lotika

I have been reducing my gluten and dairy also pretty much cut out alcohol (which Iā€™m proud of!)... Iā€™d like to go full GF and DF but Iā€™m finding the balancing act of - diet, medication, lifestyle choices, vitamins/supplements all very overwhelming.

cazmania7 profile image
cazmania7 in reply to HollieBerry

I reduced my levo from 125mcg to 100mcg and felt very unwell after three weeks and instinctively knew it was the drop in T4. I went back to my normal dose after that.

HollieBerry profile image
HollieBerry in reply to cazmania7

Ahh thank you for that info, it really does help to hear your experience in detail! And itā€™s great to hear that your aches and pains have lifted... as you say, lockdown inactivity has really taken its toll. I feel terribly stiff and my finger and wrist joints have been worse than Iā€™ve ever experienced.

I use a pill box too, have done for years! Iā€™m very forgetful and I need things as organised as possible... to compensate for my lack of organisation lol x

E_lizab8 profile image
E_lizab8 in reply to HollieBerry

When I cut out gluten the pain in my hands disappeared quite quickly, they are still stiff but pleased they dont hurt.

HollieBerry profile image
HollieBerry in reply to cazmania7

Oh really, same dose as me then! Had you started T3 at that time too?

SeasideSusie profile image
SeasideSusieRemembering

CrazySexyFool

10mcg twice a day is a hefty starter dose of T3. Regardless of what doctors prescribe (and many prescribe without really understanding it), we suggest starting with 5mcg a day for 2 weeks, if all is well increase to 2 x 5mcg a day. Increasing should be done gradually and in small increments, no more than 5mcg and when getting close to optimal dose maybe even 2.5mcg to fine tune.

As SlowDragon has said, it's important to have optimal nutrient levels before starting T3.

You should take your ferrous fumarate 4 hours away from any thyroid meds as it affects their absorption.

Also Vit D should be taken 4 hours away from thyroid meds.

Vit D supplements have important cofactors - magnesium which helps the body convert D3 into it's usable form and Vit K2-MK7 which directs the extra uptake of calcium from food to bones and teeth where it's needed and away from arteries and soft tissues where it can be deposited and cause problems.

Magnesium should also be taken 4 hours away from thyroid meds.

D3 and vit K2 are fat soluble so should be taken with the fatties meal of the day or some dietary fat. If they are tablets rather than oil based soft gels then take them separately, opposite ends of the day, or they will compete for the fat for absorption.

HollieBerry profile image
HollieBerry in reply to SeasideSusie

Ok thank you,

So perhaps I should take the vit D tablets and get some magnesium to support that.

With regards to the T3 dosage - I canā€™t get them till Monday when the chemist opens so not sure what form they come? Hopefully I can split them in half a least.. maybe start with 5mcg twice a day to begin with instead of 10?

SeasideSusie profile image
SeasideSusieRemembering in reply to HollieBerry

CrazySexyFool

What dose of D3 have you bought?

The Vit D Society and Grassroots Health recommend a level of 100-150nmol. To reach that from your current level you'd need approx 3,000-4,000iu D3 daily then retest in 3 months to check your level. Once you have reached the recommended level then you'll need to find your maintenance dose by trial and error, it could be 2000iu, maybe more or less, possibly more in winter than summer. Retesting twice a year is recommended when supplementing to ensure you stay within the recommended range.

NHS lab which does easy fingerprick blood spot test for the general public for Ā£29:

vitamindtest.org.uk/?gclid=...

Have you bought tablets, capsules, softgels or what? Tablets are the least absorbable, for best absorption an oil based softgel is best, eg Doctor's Best which is a good brand with no excipients and good value.

Yes, you need magnesium so check here to see which form will suit you best:

naturalnews.com/046401_magn...

It's also important to take Vit K2-mk7 as mentioned above.

Don't start all supplements at once, start with one, wait 2 weeks and if no adverse reaction then add in the next one, wait 2 weeks, if no adverse reaction then add the next one, etc.

As for the T3 then yes, I would start with 2 x 5mcg a day and I wouldn't reduce your Levo, as mentioned above, but that has to be your call.

I am not medically trained and my response is based on personal experience and research.

HollieBerry profile image
HollieBerry in reply to SeasideSusie

D3 dose is 4000iu itā€™s a bottle of 365... says to take one a day for the year.. but Iā€™ll check my levels during that time.

The magnesium info you shared was brilliant.. really informative! Thanks for that šŸ˜Š

I admire everyone on here so much for the dedication and commitment to managing their own vitamin levels, but the truth is 1) I find it all a bit overwhelming/confusing and 2) Iā€™m always thinking I canā€™t afford all the different supplements every month. I left my job in October 2019 due to poor health. So on full disability benefits now. I know itā€™s hard to chose the ā€˜bestā€™/most important supplements but Iā€™m going to have to start off small.

So I know Iā€™ve already pecked your brain for information, but given what Iā€™ve said, would it be a fair plan to -

ā€¢Reduce levo by only 25 (take 100 instead of 125)

ā€¢Start off on 5mcg dose of T3

(Take both of the above at 7am)

ā€¢Take iron, D3 and magnesium at 11am

ā€¢Take second 5mcg dose of T3 at 4pm

My adhd brain really struggles with routine... the above plan will be difficult to stick to but Iā€™m determined to get the best out of this!

Feel free to tell me if Iā€™ve got this completely wrong šŸ¤¦šŸ¼ā€ā™€ļø

SeasideSusie profile image
SeasideSusieRemembering in reply to HollieBerry

CrazySexyFool

If your D3 is tablets, it's very important that you take them with some dietary fat, either the fattiest meal of the day or something like a chunk of cheese or a full fat yogurt. If they are tablets don't take them at the same time as the Vit K2-mk7 because that also needs fat to be absorbed and they will compete for the fat for absorption, which is why an oil based softgel is better.

Iron must be taken 2 hours away from any other supplements as it affects their absorption.

I suggest you make a spreadsheet or write out a table with the times of when to take your different supplements and tick them off as you go through the day.

I wouldn't reduce Levo at all, I have explained why but you have to make that decision yourself.

You can take Levo and T3 at the same time so your morning dose is fine at 7am. Water only for one hour either side of taking thyroid meds.

You could take your iron at 11am and to aid absorption it should be taken with Vit C.

You could take your D3 at lunchtime around 1pm as long as you have some fat as mentioned.

I would leave 4 hours between D3 and T3 if you can so maybe 5pm for your T3 then you could have evening meal around 6pm.

Magnesium needs to be 4 hours away from thyroid meds so you could take that before bed, it's said that magnesium is calming so can aid sleep.

HollieBerry profile image
HollieBerry in reply to SeasideSusie

Sorry Iā€™m losing track of the responses, just noticed this Susie. Ok that sounds like a very good plan. And thank you for the detail! I will need to put that onto a table like you said, for my brain to process, then set alarms. Thank you so much x

HollieBerry profile image
HollieBerry in reply to HollieBerry

Oh! Iā€™ve just noticed a load of messages Iā€™ve missed.... and now Iā€™m thinking I want to go against the endo and stay on my full dose of levo... see how I feel and reduce only if necessary.

Wow this is tricky business.

Lotika profile image
Lotika in reply to HollieBerry

Mine are 5 mcg tablets and would be easy to split. I went from 100 mcg levo to 50 mcg + 2 x 5 mcg T3. I had to get them from the hospital pharmacy and I phoned to check they had my prescription first as it is an hour away, and they had run out, so I had to wait a couple of days! Just thinking it might be worth a call before you leave home on Monday!

HollieBerry profile image
HollieBerry in reply to Lotika

Yesss! I did think this. Iā€™m expecting my pharmacy will have to order them in, I can bet Iā€™m the only person in my town taking it!

Lotika profile image
Lotika in reply to HollieBerry

And because - in my case - it was prescribed by NHS endo and was therefore a specialist prescription, I had to go to the hospital pharmacy (an hour away by car) rather than the local one, a 3 minute walk away - is this the case for you too?

HollieBerry profile image
HollieBerry in reply to Lotika

Oh!? I donā€™t know? Iā€™ll surely find out on Monday! Thanks for the heads up x

You may also like...

Is it too soon to get excited?

much support and advice, all of which I have been following. Adjusting when I take my Levo,...

A moonlit walk and great excitement!

only for a couple of months? Who thinks I should take a T3 dose early morning as Paul Robinson...

Excited and nervous šŸ˜Š

go about taking t3. I've been on 100/125 Levo on alternate days for the past two years, I take it...

New to the site, very excited reading everyones posts

probably 12 months prior. I was advised to join this community yesterday after having a really bad...

Potentially exciting app

supplements etc... what works best basically! A correlation of data. I havenā€™t joined yet... got...