Help pls! Feeling very ill !

[Snqanq]

Hi all, my previous post about liquid thyrox was failed at the first try, split doses..it hit me even harder..so scared had to stop right away!!

This test was on 16 Jan 24 was on 5 days 100mg + 2 days 75mg TSH too low 0.07..

as Im losing too much weight (~10 kg) after foods poison then seen nutritionist & on strictly diet cut down most of protein as she said I was high B12 also iron..?

Reduced to 75 mg retest ~ 7wks then latest TSH 3.6 on 29 Feb seem high..

Im very skinny only 44kg remain over 3 mths now, ( compared 55 kg before )if following weights then Im so confused don't know if Im being under or over medicated now ..?

By the way my medication is always fluctuated up & down all time 100 was too high 75 too low in the middle is just ok for 2 wks then back to usual bad..

These medichecks vitamins levels on 11 Aug 23 when I was 54 kg taken 100mcg

Inflammation < 15 range < 3

Ferritin 123 ( 30 - 150 )

Folate: 26.8 ( 8.83 - 60.8 )

B12: 130 ( 37.5 - 188 )

Vit D : 66.3 ( 50 - 250 )

Folate: 26.8 nmol/L ( 8.83-60.8 )

B12: 130.0 pmol/L ( 37.5 - 188)

Vit D: 66.3 nmol/L (50 - 250)

TSH: 0.639 (0.27 - 4.2)

Free T3: 4.4 ( 3.1-6.8 )

Ft4: 25.7 (12 - 22)

Then retest on 31 Oct 23 on ~ 49 kg taken

5 days 100 & 2 days 75

TSH: 1.40 - FreeT3: 3.62 - Tf4: 20.4

Iron 20.6 ( 5.8 -34.5 )

Ferritin 130 ( 13-150)

Folate 14.70 ( > 3.89)

B12: 150 ( 37.5 - 150 ) - High

Vit D: 105 ( 50-200)

then round end Dec 23 got foods poison lost weights then seen nutritionist was on strictly diet who cut me down 90% protein said due to high B12, iron & cholesterol..

Quickly lost more weight to 44kg till now

Im on 75 mg for ~ 10wks now feeling so ill recent days all ongoing symptoms flare up intense off-balance,diziness, headache tinittus.. heart palpitation..hand feet are much pins and needles..much colder

really anxious could not sleep..too much hair lost than usual need to eat regularly ..feeling tired beyond fatigue..really ill !

I don't know if Im under or over medicated note that only 44 kg now

Just seen endo who told me I'm Hashis and not get on well with Thyroxine so we'r going on NDT trial

Prescribed just now Efra 30 mg combine with thyrox 50mcg for now .. test in 6 weeks

Any advices would be helpful and appreciated !

[greygoose]

as Im losing too much weight (~10 kg) after foods poison then seen nutritionist & on strictly diet cut down most of protein as she said I was high B12 also iron..?

I'd ask to see proof of her qualifications! Your B12 is at the top of the range, true but I wouldn't call that too high. Your iron and ferritin are not even top of the range. And your ferritin is highish because your CRP is high, meaning high levels of inflammation. And if you want to put on weight, I would have though prodtein was essential.

Weight loss can be a hypo symptoms, just like weight-gain. And you are a very poor converter, so even though your FT4 is much too high, your FT3 is low, and that's what causes symptoms like weight loss. I imagine this 'nutritionist' knows nothing about thyroid.

Your doctor is just dosing by the TSH, which is always doomed to failure, because the TSH is a very poor indicator of thyroid status once it gets below 1. It cannot tell him that you are a poor converter and your FT3 is too low. I just tells him that your FT4 is high. What you need is not a seesawing dose of levo, but a reduction in levo and the addition of T3 to your dose. So, you need to see an endo who is T3-friendly.

Prescribed just now Efra 30 mg combine with thyrox 50mcg for now .. test in 6 weeks

So, that's good because Erfa contains T3. BUT only a tiny amount of T3 and a lot of T4. So, taking 50 mcg levo with it is really not a good idea for someone who converts as badly as you do. It would probably be a better idea to drop the levo and increase the Erfa.

[Snqanq in reply to greygoose]

Hi greygoose sorry for late rep, Im shut 😑

Thanks for showing good points.,, it make sense.. I have zero knowledges on this but following NHS dr just no better than me..even some private endo I've seen in the past also no helped 😒

I've been trying to put weights recently but seem not easy at this time, not any weights gain at all

"Weight loss can be a hypo symptoms, just like weight-gain. And you are a very poor converter, so even though your FT4 is much too high, your FT3 is low, and that's what causes symptoms like weight loss."

👉 so you mean because I lost weight then I got more very Hypo now also as my FT3 is low ( im very poor convertion ) thats also the caused of my easy weight loss ?

I've just taken new prescription:

50mg levo and Erfa 30mg

reduce levo from 75mg

Only couple of days now but feel even worst..extremely tired.. my body might be in shocks with this levo reducing ..?

Pls note my body is really sensitive ( I can't even take supplements ..)

Back to your advices here

"So, that's good because Erfa contains T3. BUT only a tiny amount of T3 and a lot of T4. So, taking 50 mcg levo with it is really not a good idea for someone who converts as badly as you do. It would probably be a better idea to drop the levo and increase the Erfa."

What levo doses and Erfa should you suggest me as the moments?

so I can discuss to my new private endo as he's new we would need lots of adjustments

[greygoose in reply to Snqanq]

👉 so you mean because I lost weight then I got more very Hypo now also as my FT3 is low ( im very poor convertion ) thats also the caused of my easy weight loss ?

No, I mean you're losing weight because you are very hypo and your FT3 is too low.

50mg levo and Erfa 30mg

reduce levo from 75mg

Only couple of days now but feel even worst..extremely tired.. my body might be in shocks with this levo reducing ..?

I'm not very clear about your dose because you can't possibly be taking 50 mg levo, that would be a huge dose! I think you mean 50 mcg. And Erfa is 1/2 a grain? So, you're on not much more than a starter dose!

Free T3: 4.4 ( 3.1-6.8 ) 35.14%

Your FT3 is much too low! Should be more like 75% through the range. Your doctor hasn't a clue what he's doing! That he reduces your levo, ok, but he should replace it with more T3. I cannot imagine why he thought it was OK to give you NDT+levo, anyway. Such a tiny dose of T3. He should be giving you NDT+T3 to bring that FT3 up, and then you would more than likely put weight on.

I think you're going to have to put your foot down and tell him what you want, because he doesn't know.

So, what about your diet?

then seen nutritionist was on strictly diet who cut me down 90% protein said due to high B12, iron & cholesterol..

Your nutritionist doesn't have a clue, either. Your cholesterol is high because of your low FT3, not because you're eating too much protein!

Your iron is probably due to inflammation - were any inflammation markers tested? - not due to too much protein!

Your B12 is possibly high due to low folate - was that tested? - not due to too much protein.

She sounds absolutely useless. So, what you need to do is raise your FT3 and start eating protein agin.

Was your vit D tested?

[Snqanq in reply to greygoose]

Yes its new endo and I also don't think hes good at it.. I've been unlucks with most of dr so far.. never got the right one

just msg him earlier asked to raise Erfa & reduce Levo as your advices he said..I'll think about it..

Pls note 4 yrs ago I was on trial T3 Henningbon 20 and my body also rejected it, endo prescibed first twice a day then 3 times a days, taken after 2 days Im feeling really unwell & end up throw up with bloods so anxious then give up since..

May be synthetic T3 is too strong for me..or been prescribed too much for the trial..?

Some said they can't take synthetic T3 as too strong make them ill but fine with T3 in NDT..I also should do this trial

So do you think I should double Erfa 30mcg *2 and total off levo ( 50mcg ) ? for now to see how's it goes..

[greygoose in reply to Snqanq]

May be synthetic T3 is too strong for me..or been prescribed too much for the trial..?

I really don't think that synthetic T3 is 'too strong', but he started you on too high a dose. The starter dose for T3 is 5 mcg, not 20!

T3 is only as strong as the dose you take. If you find it 'too strong', reduce the dose.

In NDT you only have 9 mcg T3 in one grain (60 mg) and the starter dose is often only 1/4 grain, so obviously the T3 would be less 'strong'. It's only a tiny dose.

I would suggest you increase by no more than 1/4 grain. Doubling your dose would be too much in one go.

just msg him earlier asked to raise Erfa & reduce Levo as your advices he said..I'll think about it..

Kind of him! But don't ask, tell him that's what you want to do. It's your body, after all.

[Snqanq in reply to greygoose]

As you said started dose 1/4 grain equal 15mg right ?

My started dose now is erfa 30mg and you advised to raise it..a bit confused..?

on your previous

"So, that's good because Erfa contains T3. BUT only a tiny amount of T3 and a lot of T4. So, taking 50 mcg levo with it is really not a good idea for someone who converts as badly as you do. It would probably be a better idea to drop the levo and increase the Erfa."

so how much should I take now as a start ?

And levo how much to reduce

[greygoose in reply to Snqanq]

Sorry, didn't realise you'd only just started the Erfa. So, how long have you been taking the 30 mg?

And you've just dropped the levo by 25 mcg, haven't you? OK, so now on 30 mg Erfa and 50 mcg levo, right? So, stay on that dose for six weeks and then retest. And see how you feel, of course.

Just to be clear, can you tell us if you started on levo only, and then added in the Erfa sometime later? How long after? Because your post is rather confusing, I'm afraid. Difficult to understand what happened when.

[Snqanq in reply to greygoose]

Yes I got trial NDT just now, only taken day 4th today Erfa 30mg & levo 50mcg ( reduced from 75 mcg )

Oh ok so my dr was right this time lol

I did msg him to amend prescription today as your suggested lol, but he seem to be ..ohh uhh.. let me think..

Ok so lets do this trial for 6 weeks as he said then see how it goes ..

Finger cross it will work somehow

I seem so unlucks all those years seeing lots of dr but all failed 😞

[greygoose in reply to Snqanq]

That's pretty much most people's experience. Doctors know so little about thyroid. Took me many years and many doctors and still didn't feel well until I started self-treating and working it out for myself because none of the could join the dots up!

[Natissick in reply to greygoose]

was interested to know what you’ve done to self treat yourself. I’ve been taking fire max at first it was amazing but now I’m worse than ever.

[greygoose in reply to Natissick]

You can find most of the details on my profile.

What is 'fire max'?

[Snqanq in reply to greygoose]

Hi as you said ndt started dose often 1/4 grain, also started dose of T3 is 5mcg

So do you think my started dose Erfa 30mg (1/2 grain) included 8mcg T3 is higher for me as this trial

Im feeling..not right at moments..

Seem to be high..

Im feeling bit worst after taking them just few days but pls note I already feeling really ill unwell before taking it..

Im extremely tired, tired at the heart very anxious...

Or I think I should reduce

Erfa 30mg every 2 days + 50mcg levo

Other day levo 75mcg only..alternate

My body is extremely sensitive after catching covid even I can't take supplements or some certain foods I used to has before..

I mean all of the sudden new treatments my body is not gonna accept easily.. just very low started dose give that sensitive body some time to adapt..right

Appreciate your advices and admire your knowledges

[greygoose in reply to Snqanq]

It could very well be too high for you, yes. You could try reducing it by half for a few days to see if you feel better.

[Snqanq in reply to greygoose]

Seem to be very high for my really sensitive body after catching covd,

It rejected lots of things I used to has before

So I should be caution with everythjng new now,

I'll talk to endo tmr and reduce it by half

[Snqanq in reply to greygoose]

Hi im back for update..had a break 3 days off Erfa 30mg..felt better try again by half 15mg..less intense but same bad symptoms..racing heart.. insomnia, headache, anxious..back straight away in half of day.. Im not dare to carry on..as symptoms last longer although stop taking..

As felt too much meds on the previous week then I carry on reduced thyrox a bit also had a break stop taking everything (erfa&levo) for half day seem to felt temporary ok better..

Can you pls take a quick look on my new post related to this..see others advised saying that some Hashi' can not take NDT..?

Look for your updated advices ..

Thanks !

[posthinking01]

Hi there - I didn't get on with Armour or ERFA they made me feel very ill and sweating profusely - it might be you are losing weight because your adrenals need support - one of the signs of adrenal insufficiency is losing weight.

[Snqanq in reply to posthinking01]

Thanks for showing quite good points..

I had trial ERFA & felt more ill ..yes really heated up sweating at night with racing heart...+++ horrible had to stop

What should you do when you didn't get on with NDT also thyrox ..?

Is there good idea to trial on low dose T3 ?

Also how to support adrenal ?

[posthinking01 in reply to Snqanq]

I was switched to Levo tablets when I had to have a short senacten test - the doctor wouldn't allow me to be on ERFA as she couldn't accurately work out the T4 etc. - I went on T4 levo tablets and found the sweating stopped - but down the line I was lactose intolerant - so I am now on liquid sugar free T4 - but for adrenal support - B complex vitamins - and Vitamin C and I'm afraid steroids if you are deficient in the adrenal gland area. But you would need to look into that via your medical people.

[Snqanq in reply to posthinking01]

Thanks for details ..

Do you add on any bit of T3 ?

[posthinking01 in reply to Snqanq]

Yes take 10 mcg all in one go - splitting didn’t work for me - so now on 125 mcg T4.

[Natissick]

I can’t believe this reading this was like reading about myself exactly how I feel. Maybe I have Hashimoto condition as well. I don’t get on with fire Roxanne at all I’m 46 as well just a year younger than you has there been any improvement because I’m really ill as well all your symptoms mirror mine.