Thyroid UK

T3- small dose. Feeling awful

Hi, I went to see my Endo in June and I went armed with my own supply of T3, He reduced my dose of Levothyroxine from 200 to 150 and introduced 12.5mcg of T3 I've not seen him yet since. I was suppose to see him in August but he's been away and now he's back I'm on waiting list for an appointment. The small amount of T3 has not made me feel any different but from last Monday I have felt shocking. Palpitations, dry mouth, anxious etc. I'm wondering if it's because I've not seen him and now my levels are all out. I have purchased private blood tests from medichecks yesterday and I go to BMI hospital on Monday for them to take the blood and I will send them back so it's going to be 2 weeks before I even get any results. Any advice will be greatly appreciated

34 Replies
oldestnewest

I had a similar experience although self treating - I was good for 9 months then the palpitations and not feeling quite right started - it's hard because I get palpitations when I'm hypo and my blood tests were not brilliant but nowhere near hyper. The one thing I attributed to T3 was that it probably exhausted more rapidly and as a result I could have been undermedicated. It's so very difficult to tell without blood tests and I'm sure someone will come along with sound advice soon. I've gone back to T4 only until I can work out if thee is a conversion issue and after a few days the palpitations calmed down.

1 like
Reply

Thanku for your reply Susie. As we well know it's a shocking feeling. I've spent most of the week laid on the bed. Tried leaving house today with my hubby in the car, we got a mile on road he had to turn round and drop me back home. I've had 3 melt downs this afternoon with feeling so bad and I'm sure stressing myself over it dosnt help. I'm getting that desperate I don't know how much longer I can wait to see the Endo, or wether to ring his secretary and plead with her but until blood tests come back they will show more but I'm wondering if to forget the T3 and start back and up the Levo. I can't carry on like this. I've already had 15 years of hell and now perrimenopause has raised its ugly head also so that's mixed in!!!! I've just no quality of life. I've got a real bad what I think is an acid problem which is effecting my breathing in my throat. The Endo requested I had a Ct Scan and a Barium swallow which I did on 31st July but don't know any results . Ggrrrrrrr

Reply

Awww I do know exactly how you feel, the main thing to hold onto is this will pass and you will get sorted out and feel better. I know this link might not apply to your circumstances but it helped me make some sense of the highs and lows of hashi's

restartmed.com/hashimotos-s...

Try and rest x

1 like
Reply

Thankyou Susie I will look at the link now. Neither my GP or my Endo have said that I have Hashi but everyone else says so when they see my blood results

Reply

Oh and ps

My diagnosis was in and amongst the start of menopause and death of my mother I totally sympathise sometimes it all just seems too much but with everyone's advice and time sure you will feel well again soon x

1 like
Reply

Thankyou x

Reply

Your GP should have the results by now for the endoscopy - have you asked ?

Have you tried splitting the T3 dose ? When do you take it at the moment ?

Are you gluten free ? How are your levels of B12 - Folate - Ferritin - VitD ? Are you taking any other meds ?

Hope you soon feel better. I have Hashi's and a B12 issue 😊

Reply

Hi Marz I havnt asked Gp about results but if Gp had them the results would be online for me to see. My surgery operates system online where I can sign in and order prescriptions, see test results, I can see what the Gp has written down after each appointment and I've been on and looked and there is nothing.

I am only taking 12.5mcg of T3 for the last 9 or 10 weeks and I take it first thing in the morning with the Levo.

I've just added my ferritin, folate, b12 and vitD results onto this thread at the end. No im not totally Gluten free but trying I've stopped with bread all together. But I have the odd bar of chocolate 🙄

1 like
Reply

Well, he reduced your levo by too much to start with. And, if you're buying your own T3, surely you can decide when you increase it! Normally, one increases by 6.25mcg every two weeks until you reach one whole tablet, then hold for six weeks, and test. 12.5 mcg really isn't going to do much for you.

2 likes
Reply

Hi greygoose yes I've bought my own. Got 4 boxes to keep me going abit. I was just unsure and worried about dosing myself with advice off the Endo but like you say he reduced the Levo by far too much. I've suffered too many years with this I'm seriously wondering if I would be better going private would it make any difference. Really getting to end of my tether, fed up of feeling ill.

If the T3 is increased do I need to decrease the Levo? I might take an extra quarter of a tablet tomorrow.

Reply

No, leave the levo as it is.

It's a gamble whether or not you will do better by going private. My personal opinion is that you'd do better going it alone! They have no idea what they're doing, and private endos only had the same education as the NHS endos - sometimes, they're the same person! Or rather, the same person does both.

6 likes
Reply

Thankyou Greygoose for your advice really appreciated. People keep saying I have Hashi Also because my thyroid antibodies were 328.3. I think I need to follow a certain diet. Any advice on anything I can follow

1 like
Reply

Most Hashi's sufferers find that a 100% gluten-free diet is beneficial. It can lower antibodies, and make you feel better - might even help with a little weight-loss, if you need that.

The one thing you really need to avoid, is unfermented soy. Which means avoiding all processed foods, because they are stuffed with it! Soy protein, soy flour, soy oil... It's really bad for you.

1 like
Reply

Hi greygoose, one thing I have been using that has REALLY HELPED the bad anxiety I have had with the thyroid issues and with is a hormone cream I bought online called twenty to One its for perrimenopause it is Progesterone and a real small amount of Estrogen . I've been using it about 3 months. Now that has a very tiny amount of soyabean oil in but I emailed them and asked about it and they said the amount is that small SO OH DEAR!!! Does it matter if it's used hours away from my thyroid meds

Reply

Probably not. I don't really know about soy oil on the skin. And, if it helps you, then perhaps the benefits outweigh any disadvantages.

Reply

Ditto - I have gone privately 3 times to different endocrinologists - not the best experiences and I have learnt more by educating myself. Other meds hold me back or I would be more adventurous we are not encouraged to have the confidence in improving our own health by the system sadly😕

2 likes
Reply

Susie what are your thoughts on NDT.

Reply

TSH 0.199 (0.27 - 4.20)

Free Thyroxine 21.96 (12.00 -22.00)

Total Thyroxine(T4) 125.5 (59.00 - 154.00)

Free T3 3.94 (3.10-6.80)

Thyroglobulin Antibodies 570.200 (0.00 - 115.00)

Thyroid Peraxidase Antibodies 323.8 ( 0.00- 34.00)

These are my last blood tests done by medichecks in May.

1 like
Reply

So you have Hashimoto's. Extremely likely to have low vitamin D, folate, ferritin and b12

Have these been tested? If not get done asap

You really need to consider trying strictly gluten free diet too

Endo's have no idea about Hashimoto's.

T4 or T3 won't work if vitamin levels are poor

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

1 like
Reply

Hi I'm having them tested privately tomorrow morning so will be about 2 weeks before I get the results. My last results from I think was April

Vitamin B12 274 (140.00 - 724.00)

Folate. 3.74 (3.89 - 26.80)

Ferritin 112.5 (13.0 - 150.00)

vitD 82.4 nmol

1 like
Reply

B12 and Folate are both low in range - so need treating as they work together in the body. VitD almost there - around 100 would be excellent - are you supplementing ? Ferritin only slightly over range - do you have any inflammation in the body ? - usually raised with inflammation ....

Reply

Hi Marz I eat loads of spinach lol does that help my nails grow like mad.

I'm putting B12 liquid drops under my tongue but I have been a bit slack with them lately. When I feel ill I think is it them drops is it that tablet etc

And I'm taking a folate capsule and 5000iu vitD3 softgel capsule with a K2. I also use a magnesium spray and I do have a natural calm magnesium drink in a night. Ah inflammation

CRP - High Sensitivity 10.9 (0.00 - 5.0)

Reply

So you have inflammation somewhere 😊 Gut issues ? - or could be the Hashimotos. Gluten free could be the way to go .....

Sometimes it is not what we eat but what we absorb 😊

Reply

I know all my joints and muscles pain about 2 years ago they put me on prednisone for nearly 12 mth and I came off them myself. Yes and probably got gut issues 😣

1 like
Reply

So going gluten free will help to heal your gut - which is the cause of so much pain and illness ....

I should know as I had a TB gut - Crohns and Hashimotos with a serious B12 issue 😊

Reply

Got blood tests in morn so will put results on when I get them. Thankyou for all your replies

1 like
Reply

Usually doctors say that hashimotos and hypothyroidism are treated as the same. Howver i second whoever talked about eliminating gluten. If you havent already tested to seenwhat else is causing the inflation of antibodies i would make sure to get those checked out as well. Best of luck, just recently found out I have hashimotos as well. Feel better soon!

Reply

Angelica, the helpfull people in here, need your test results to help, but they also need the ranges ( the numbers in brackets behind your result) to see what is going on.

I am new to the site myself. x

1 like
Reply

glad you found your way back in here! once you have the test results these lovely people will do all they can to help you x Berni x

1 like
Reply

Now today I feel totally fine. And still on the same amount of thyroid meds etc so what is happening . This is what frustrates me. I have had a dreadful week from Tuesday to Friday yesterday slightly better but today feel much much better. Can that be thyroid . I just don't know.

Reply

Hi, Split the T3 dose as it could help. I had extremely bad acid reflux and sickness even on a gluten free diet so I reduced my T4-Levo myself to just over half the normal amount and added T3 of half a tablet twice a day, to date I have not been sick and I have NO acid reflux so this may work out for some people with no thyroid output (mine was surgically removed). May not be the cure all but better that than taking a PPI daily or suffering so it may be worth a try whilst you are waiting for your appointment?.

June

1 like
Reply

Hi Jeremy, I do think this acid has got worse since I've been taking T3. What dose of Levo were you on and what did you drop too. Thankyou for your message

Reply

Hi, Its June actually, I was on 200mg of Levo only- swapped to 125 mg of Levo and a split tablet of Cynomel T3 60mg half with Levo early am and half after lunch. I have not had stomach ache or been sick since I have taken this method of treatment.

It may be that you should take more T3 and less T4- worth trying in case it works for you also.

June

1 like
Reply

Yes Jeremy I agree

Reply

You may also like...