Confused Again :(: Finely I was referred to an... - Thyroid UK

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Confused Again :(

Katherine1234 profile image
16 Replies

Finely I was referred to an endo. My T4 was 24 and my T3 3.80. He prescribed me 10mcg of T3 and I had to cut down my T4 from 100 to 50 mcg. I felt a little better for 2 weeks and then I started get very unwell, hair falling out, even more fatigue and all the bottoms of my feet and lower legs were paining me terribly, making it difficult to walk. This is an undermedicated symptom of mine.

I upped my T3 to 15mcg mornings and 75 mcg T4 evenings. 4 weeks later I upped to 20 mcg T3 morning and kept at 75mcg T4 before bed. Gosh knows what my endo will say, but I could not function at all with what he left me on. I have felt a bit better. Still do not have energy. I now do not have the dizzy and passing out when I stand. My awfully low blood pressure appears to have come up a bit.

I spoke to endo nurse this morning and asked when my prescription was as I had to up T3. She says my last lot of blood tests were all normal. I wish I had wrote them down as she told me. She said T4 -12 and she said was normal. T3 - 4, she said normal, TSH 2.87, she said normal. I know that I do not feel good unless my T4 is 20 and TSH below 1. She was adamant that all my results are normal.

I don't feel normal at all :( Any suggestions peeps, I am at a total loss. Thinking T3 was going to be the game changer :(

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Katherine1234
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SlowDragon profile image
SlowDragonAdministrator

You may need to split T3 as two or three smaller doses spread through the day

And ALWAYS split T3 day before test

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Extremely common that endocrinologist reduces Levo too much

Retest again in another 4 weeks

Testing with correct timings

Meanwhile ESSENTIAL to test ferritin, folate, B12 and vitamin D

When were these last tested

Please add results

What vitamin supplements are you taking

SlowDragon profile image
SlowDragonAdministrator

Get hold of printed copy of results and ranges from last test

Katherine1234 profile image
Katherine1234 in reply toSlowDragon

I will get printed results on the 16th January SlowDragon I will ask for them. My blood test is not booked into until 11am. I did ask her should it be early morning but she said it does not matter for thyroid.

SlowDragon profile image
SlowDragonAdministrator in reply toKatherine1234

I did ask her should it be early morning but she said it does not matter for thyroid.

TSH is highest early morning so recommend test before 9am if possible

adin profile image
adin

he only had to add t3 to the existing dose of t4(10T3+100T4)

Katherine1234 profile image
Katherine1234 in reply toadin

My T4 had gone over the top of the range so he halved it Adin :(

adin profile image
adin in reply toKatherine1234

It was the same for me, but by adding t3, the analyzes changed and ft4 went downhill

Katherine1234 profile image
Katherine1234 in reply toadin

This could be me adin. I took 100mcg of T4 last night and 20 mcg T3 this morning at 10am. I will see how I do for a week.

TiggerMe profile image
TiggerMeAmbassador

He has been very gung ho by cutting your T4 back by that much! They should never change T4 by more than 25mcg... you were only a little over and this would likely have dropped into range once the T3 kicked in.

If you have enough T4 I'd go back to your previous dose and perhaps drop 100mcg across the week.... T3 is transformational but if your fT4 drops too low it makes you feel dreadful again 😕

Katherine1234 profile image
Katherine1234 in reply toTiggerMe

I do have 100 mcg of levo here Eeyore as he gave me new prescription for 50 mcg levo. I can go back to previous dose but what does perhaps drop 100mcg across the week mean. Sorry it might be my brain :(

TiggerMe profile image
TiggerMeAmbassador in reply toKatherine1234

I'm thinking take 600mcg across the week, it depends how sensitive you are to change, some can just miss a dose one day a week whereas others would spread it out more and maybe alternate 75/100 🤗

Maybe as you have the 50's just drop to them twice a week... it really depends how organised you are with pills as it all becomes a bit 😵 when you're already feeling foggy

Katherine1234 profile image
Katherine1234 in reply toTiggerMe

I get it now Eeyore, yes foggy brain is me :)

Batty1 profile image
Batty1

He didn’t even need to reduce your T4 10mcg T3 isn’t a lot

Katherine1234 profile image
Katherine1234 in reply toBatty1

I did not realise it Batty1 :( I felt marvelous straight away taking the 10mcg T3, my tummy aches went when I ate, my gallbladder pain went, my weak heart beat and low blood pressure got a little better. I could feel a small surge of energy in the mornings about an hour after taking it. Normally in the mornings I am a dead person, it takes me 2 to 3 hours to start getting any get up and go. I feel awfully sick in the mornings, my heart races, I am dizzy. This went and I actually had some hunger pains in the morning. Have not experienced hunger pains for about 20 years on T4. 2 weeks later I crashed, hair falling out badly, pains in my legs and feet, especially under the foot arches, pressure headaches. These are classic undertreated hypo symptoms for me :(

Batty1 profile image
Batty1 in reply toKatherine1234

Endo’s use this reducing technique a lot… Take away T4 when they add T3 and they will explain because the T3 will lower your TSH and you know Endo’s are start struck with TSH levels …. Its true T3 will lower TSH so unless your other thyroid level's go out of range it shouldn’t be worry some …. Also another thing the Endo will do is remove/ reduce your T3 because your TSH will be low and again this isn’t important as long as your other thyroid levels are in range and your feeling fine.

This group of doctors are sneaky so don’t fall for their shenanigans.

Katherine1234 profile image
Katherine1234

I will keep an eye next time I see him. It looks like he is only seeing me once every 4 months. In theory I was to stay on 10 mcg of T3 and 50 mcg of T4. Gosh knows what he will say when I tell him I have been upping my medication. I have another blood test on the 16th January, although not untill 11am. I did query the endo nurse, is that ok as I thought it had to be early morning and she said no that is fine for thyroid.

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