Noooooo it's all coming back.......... - Thyroid UK

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Noooooo it's all coming back..........

reschy profile image
6 Replies

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03.02.16 meds 150mcg Levothyroxine daily

TSH 0.42mul/I [0.27 - 4.2]

FT4 19.8 pmol/l [12 - 22.0]

FT3 4.6pmol/l [3.1 - 6.8]

Hypothyroidism since April 2012 multiple symptoms despite being on 150mcg of Levothyroxine. I finally had an appointment with an Endo at my local hospital who agreed to trial me on Liothyronine. I was also told to stop the Levo which I did.

I felt much better just on the Liothyronine much brighter in myself more alert only needing a daytime nap maybe every now and agin and not all afternoon!! I was going back to the gym and keeping up with my husband on walks.

Since my last Endo appointment on 28/4/16 due to my latest bloods (please see below) she has reintroduced 50mcg of Levothyroxine daily as well as my Liothyronine.

22.04.16 meds 10mcg 3 times a day

TSH 6.11mul/I [0.27 - 4.2]

FT4 4.1 pmol/l [12 - 22.0]

FT3 2.4pmol/l [3.1 - 6.8]

I feel completely rubbish now having introduced the Levo and all my old symptoms have come back.

It's only been three weeks since the combo of both drugs. Do I keep going on taking the combo hoping that things will improve? I am not due for a review for 3 months by the Endo. If my T3 levels remain low the Endo has advised increasing Liothyronine to 20mcg 3 times a day along side the Levothyroxine

Thank you so much for your comments, help and advice I really do appreciate any help and information you can give. I just want to start feeling like me again.

T xx

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reschy
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6 Replies
Clutter profile image
Clutter

Reschy,

It should have been obvious to your endo that you would become under medicated when stopping 150mcg Levothyroxine and replacing it with 30mcg T3 which is equivalent to 90mcg Levothyroxine.

If the symptoms resumed before Levothyroxine was reintroduced they are probably due to under medication and will improve. If you've been feeling rough only since Levothyroxine was reintroduced I would stop the Levothyroxine and increase T3 to 50-60mcg daily and see how you do.

___________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

reschy profile image
reschy in reply toClutter

Thank you Clutter. More worrying for me now is. My GP wants to have a telephone appointment with me regarding the Endo's letter sent to her, after my appointment. I have a copy of the letter and see anything that she may have an issue with except to stop prescribing the T3!!!

marsaday profile image
marsaday

In your situation i would take full control over what i was taking and go my own way with the correct T4/T3 mix. Use the end to get the medication, but do not leave it up to them to say what you need to take to feel well.

The best way to get well is to self trial different mixes of T4/T3 (or T3 only). You will be the best doctor and you have seen T3 has been a big help, but you can't be sure why it was so successful because you have a few variables which need answers:

a) Was T3 working well because your T4 was nice and high at the beginning?

b) Do you feel worse now because the T4 has dropped back?

c) Has the reintroduction of the T4 caused problems in its own right?

So questions clutter has asked as well need to be answered.

These questions can be answered if you methodically take control over your doses and carry out small experiments which will help show what is doing what. This will take time to get the correct answers, but it is the only way to get good long term health back.

My first trial would be to go back to T3 only and see how you react. If you get better again and still only need 30 T3 per day then you should be able to conclude the T4 is not helping. Some people do better on T3 only, but i find they are a minority.

See how you get on for at least a stable month on this T3 dose before changing anything else. Then if you have access to more T3 try introducing a little more, but only go up by 5mcg on every change. Hold any new level for a good two weeks to see how you get on. Sometimes too much thyroid meds can make us hypo again. It certainly did for me and i now make changes up or down very slowly and in small amounts.

Later on in the future if all is ok with a set amount of T3 only i would be tempted to see what a reintroduction of T4 does. It would be a 25mcg amount to try first.

I carried out a big experiment on myself over 4 yrs ago because i wasn't doing that well on 150 T4 and 50 T3, so i dropped the T4 to 25 and kept the T3 at 50. For a year i did much better on a low T4 amount and a higher T3 amount. However, i really wanted to see if i could use more T4 and less T3 because T4 is easier to use. So over the next yr i slowly upped the T4 and dropped the T3 and i got even better. I eventually got to 125 T4 and 20 T3, but then i ran into hypo problems again. I was really stumped on what was happening and it was by chance that i missed a mornings 10 T3 dose one day. Well by lunchtime i was feeling much better. so i just stopped taking the T3 and was back on track again. It turned out my body now didn't want any T3 at all.

So i had gone from taking 150 T4 and 50 T3 to taking 125 T4 only and doing much better all over a 2 yr period. I think my body has been reeducated in how to use the thyroid hormones and T3 helped enormously with this.

I think you will find what you need as it is a good sign you felt good on T3, so this is a positive. Also try and see feeling ill / hypo as a positive indicator if you are messing around with your levels. This is all important feedback which will help guide you to what the body needs.

Sorry for the ramble, but i thought i would share my experiences.

reschy profile image
reschy in reply tomarsaday

Thank you so much for your advice. I really appreciate everything.

reschy profile image
reschy in reply toreschy

Lots to consider what will work best for me. A little more worrying is. My GP wants to have a telephone appointment with me regarding the Endo's letter sent to her, after my appointment. I have a copy of the letter and see anything that she may have an issue with except to stop prescribing the T3!!!

faith63 profile image
faith63

cut out the t4..you don't convert well, thus, the high rt3, makes the t3 useless. its called reverse t3 dominance.

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