Help pls! Medication mess !!

[Snqanq]

Hi all,

Following my previous post.. "Felling very ill, help pls" but not much response only one member

healthunlocked.com/user/Snq...

I've been on Erfa (30mg) trial + thyrox( 50mcg) .. just after few days felt much worst with all symptoms likely overmedicated

heart palpitation ( heavy tighten chest..)

Much headache, tinitus, extremely tired

Hand feets numbness especially more at night when body's too much heated up

Insomnia couldn't sleep...

Too muchc ANXIOUS !!! Depressed..

Pls note I already feeling ill before taking thia trial just got worst ...

I had to stop Erfa 30mg.. keep taking thyrox on reduced dose as felt overdose ( pls note im only 44kg losing ~ 10kg recent 6months)and got worst Hypo..)

Stop Erfa 3 days felt a bit better from that intense symptoms.. then start again by half 15mg as greygoose advised..but quite same bad feeling back..

a bit of heart palpitation, headache.. couldn't sleep back again but milder as its half .. As the body's still in overmedicated state..?

Im not sure.. I just stop it again..

Still taking reduced Thyrox 62.5 ( 50+12.5 25mcg cut half)

Still feeling bad now.. although heart palpitation getting better but terrible tired and anxious depressed carry on ..attacking now

Scared..worrying.. to keep trying to take Erfa even half of dose 15mg...

Contacting ongoing endo but he seem not to much know to advises

I know Im on quite a rare case after catching covid my body's just incredible sensitive which can't even take supplements ..

I don't really know what to do...

Please advices I need helps !! Appreciated !

Still same

[pennyannie]

Hello Snqanq :

just a couple of thoughts - some Hashimoto's patients simply can't tolerate any form of Natural Desiccated Thyroid as introducing more thyroid gland - even that of a pig - upsets their immune system further - causing further transient hyper type symptoms.

With Hashimoto's this auto immune disease is known to attack and destroy the thyroid -

your immune system systematically attacks your thyroid and reduces it's ability to function -

and with each attack you are liable to experience these ' swings in symptoms ' and ultimately when the immune system response calms back down again - the ' swing swing's back ' with your thyroid further damaged and you likely feeling more hypothyroid than previously.

So it might be that you need to stay on synthetic T3 and T4 thyroid hormone treatment options.

Many forum members find the research and suggestions of Dr Izabella Wentz of help - thyroidpharmacist.com

[Snqanq in reply to pennyannie]

Hi pennyannie yes I was on synthetic T3 4yrs ago & failed also but not sure If private endo very popular (name removed by admin ) given me too much T3 ( Henningbon 20 ) first said 2 times then he changed mind told me 3 times a day on trial.. after only 2 days..it made me so sick vomited blood at night so terrifying !!

Then never look back 😞

I'll take a look on your links & see others saying, thanks and hope you'r well !

[pennyannie in reply to Snqanq]

Can you identify these symptoms as different from those you experience when having ' hyper type swings ' from your immune system attacks ?

I think I saw that you have already tried liquid T4 - so guessing didn't resolve anything - maybe you can't tolerate T4 at all and need to take T3 only :

Was the Private trial T3 only ?

Leaky gut is common with Hashimoto's patients and this needs resolving before any thyroid hormone replacement will work well :

Have you been checked out for Pernicious Anemia / Celiac Disease and food intolerances -

and your ferritin, folate, B12 and vitamin D all at good, optimal levels ?

[Snqanq in reply to pennyannie]

I got those Vitamins checks and B12 is high top of range, iron is more than half ways.. others are all ok or not bad,

Seen nutritionist done some guts tests as Im bloated..like chronic constipation but seem no real issues with guts test

with diet & digestive enzyme supplement bit better now

Yes just recent tried liquid levo same dose split half..tried 1 day only really horrible feeling..stop straight away!!! While this liquid works for many got better..It confirmed more that thyrox is no work for me or even worst😞

I don't remember if we got trial T3 only 4yrs ago or still combined T4.. have to find endo letter to look back...

Don't really know what to do..

But have to be on trial everything now .. trial and errors that the only ways

[pennyannie in reply to Snqanq]

Ok let's see if the Private prescription was for T3 only - years ago -

Check and see if your vitamins and minerals were run back then as well as if your core strength not solid - T3 may have initially proved too powerful for you.

[inthedoldrums]

I was in a very similar situation to you with the exact same symptoms and was very ill with it. I did a genetic test and found that I was unable to produce enough enzymes to convert the T4 into T3 and so the extra T4 was being turned into Reverse T3 which blocks the uptake of normal T3. This means that you become more and more hypothyroid as you take more Levothyroxine or NDT.

After a battle I was prescribed T3 20mcg for a while before it was stopped, but because I was so burnt out it did not really help much but it did not cause the nasty effects of Levothyroxine. I think if I had been started on a much lower dose, I might have stood a chance.

I was diagnosed as having ME CFS which I am certain was caused by this.

As a result of the above my adrenal function was very low according to saliva tests. That has now finally recovered but it has taken about 7 years to fully recover.

So I am now waiting for a supply of T3 alone to arrive and am starting on a very low dose of 2.5mcg as my body is in poor shape because of the CFS.

I am now using a private clinic and a private GP at a pharmacy that actually understands about these things so that I can hopefully trial this and get sorted out before returning to the NHS as they have very little understanding of this condition and are strongly discouraged from prescribing T3.

All very best wishes to you and I am so sorry to hear what you are going through. I have been there, and hope this is of some help to you.

[Snqanq in reply to inthedoldrums]

Hi inthedoldrums thanks for msg im glad to see that Im not alone there's more ppls similar to my conditions that help to reduce my anxious, Im very poorly at moments can't even chat.. can't think straight..would be nice to have more advices from ppl's experiences..following you will be in touch Stay well and All the best x

[daisylorna in reply to Snqanq]

Hi I am having similar problems I can only take T 3 in a very small dose . I have just got up to 2.5 mcg once a week. It is all my body can tolerate. I am now on an alkaline food regime to help with leaky gut and to assist my body to tolerate T3. I hope this helps you, best wishes

[Snqanq in reply to daisylorna]

Hi daisylorna sorry I've missed your msg & want to check that you still having 2.5 mcg only once a week ?

As Im starting T3 first 2.5mg for 5-6 days and feel no good, really much tired then off few days and back with crumbs tiny about ~ 1.5 mcg for 7 days still very tired.. especially after periods feel worst as usual..

have to stop taking T3 for a while and trying to put more weights as losing weight with essentials vitamins levels decreased..

How you feel on adding 2.5mcg T3 for only once a week ? Let me know so I might try same like you once a week instead of full week as my body seem not tolerate it all same you ..Thanks !

[daisylorna in reply to Snqanq]

Hi Snqanq sorry to hear you are still having problems with T3. I am still having the same issues myself on 2.5mcg. I'm persevering and my symptoms are getting very slightly better. I think the alkaline diet is helping. The T3 is still making me tired and I have a bit of brain fog. It is a struggle to do anything but essential household tasks at times. I hope you start to feel better soon, best wishes Lorna

[Snqanq in reply to daisylorna]

daisylorna thanks a lot for reply..

oh so you still having issues with T3 even with little 2.5 mcg only once a week..

I can see other's new post saying she is also much struggling to introducing T3..

So we are not the lucky ones 😞

Im not get on with thyroxine, trial NDT seem to be failed also, much hope for T3 but now struggling.. really not know what to do..

I have to stop them all and try to build up my core strength as optimal as possible before trying them again

I don't know about alkaline diet..will check it out later and might follow you have to try anything since not much choice of medications

One more question are you still taking Thyroxine as moments & what dose?

[daisylorna in reply to Snqanq]

hi just on T3 it’s very slow going I feel awful for about two and half days then find I’m ok for the rest of week with more energy and able to think properly. It was my endocrinologist who started me on I x 5mcg T3 tablet once a week but even that was too much, so reduced to half a tablet to let my body get used to it. I think I am very sensitive to medication and have a lot of allergies. Since being on no white flour, no bread, no dairy and eating mainly alkaline food I’m definitely getting better but very slowly. You can find a list of alkaline foods online, it’s lots of everyday foods and fruit and veg so it’s easy to follow. I hope this helps you, I know how difficult it is. I can’t take levothyroxine as it was causing heart problems which is why I’m preserving with T3. Best wishes to you.

[Snqanq in reply to daisylorna]

Ohh you don't even take Thyroxine.. not at all..only a bit of T3 once a week..

Thats the least medication over this site I've ever heard as people over here normally advice you to take lots of different sort of medications which some overly sensitive body like you & me can't tolerate!! You'r very much similar to me on this

With long term ongoing Thyroxine & getting worst.. I'm just on trial with all sort of meds recently NDT, thyroxine liquids, now T3..👉Im struggling with them all🤦‍♀️ my body doesn't accept, doesn't agree with all of them

But at least I can see Im not the only one, there you are..same situation

I've seen functional nutritionist but not good one so not helped..

I already on GF, DF, Soya free, Egg white free...a lot more..but nothing seem to be better as Im still have to taking Thyroxine👉only got worst never get better..

Im going to try the alkaline as you.. Yes we should look at our gut first thing & fix it first then other will follow right..

I got quite badly constipation long time so quite make sense almost nothing work..regards the healing

Now Im going to research myself follow some real ppl with real experiences like you and yes we'll have to find the right ways round.. Im not giving up until we get there 🌈

Thanks so much Lorna for your advices, I also wish you all the best lucks and stay healthy all the way 💚

[daisylorna in reply to Snqanq]

You are welcome, yes very sensitive so I'm going with my body. I do think T3 is helping, just my body needs to acclimatise to it. Definitely address any gut issues, I think it will help you to tolerate your medication. Yes you must have very sensitive system like myself. I was going to try NDT but I'm staying on T3 and will gradually up the dose slowly to what my body can tolerate. Take care

[inthedoldrums]

I understand totally. I have also been so low that I could not think straight and my body could not tolerate company and even reading was too much and television completely out of the question. So rest as much as you can as that is what your body is telling you and chat only when you feel up to it. I do hope you will have an improvement soon and send you my very best wishes. Take care.

[greygoose]

It's perfectly true that NDT doesn't suit everyone. It didn't suit me, made me quite ill. I put on a ton of weight and became bed-bound. The only thing that works for me is T3 only but in very high doses.

So, you can't tolerate NDT, and you can't tolerate levo, so the only thing left is T3 only. Can you get hold of T3 and start on a very low dose?

I doubt if your diet is doing you any good at all. I expect you have low stomach acid - most hypos do - have you tried the burb test? To see if you have low stomach acid you drink half a glass (4 ounces) of cold water with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don't have enough stomach acid.

If you do have low stomach acid, and you take something to help with that, then you'll probably find things change. You'll be able to absorb your thyroid hormone better. Because at the moment, you are not over-medicated, you are still hypo, and that's probably what's making you ill.