Exhausted and suicidal on Levo, need advice... - Thyroid UK

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Exhausted and suicidal on Levo, need advice...

Indygo profile image
14 Replies

Hi guys!

My second post, although I read the forum every day.

To cut long story short, it took many months for me to get the Hashimoto diagnosis. It only happened in the beginning of January and I was put on 50 Levo and retested after 8 weeks and increased to 75. Tomorrow I’m having another blood test and hoping for a dose increase because if using the 1.6x formula then I should be on 150.

In February, before the dose increase, my TSH was 2.64 and T4 10.6 (9-23).

All my vitamins and minerals are optimal.

The problem is that since February I feel much worse than before starting Levo and even the dose increase didn’t make a difference. I have all the hypo symptoms, plus developed breathlessness and dizziness on standing etc. Not to mention my mood, which is rock bottom. Do you think it may be adrenal insufficiency? I only started reading about it yesterday. Is there a point in testing it? If so which test do you recommend?

Thank you for your help.

Lucy

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Indygo profile image
Indygo
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14 Replies
crimple profile image
crimple

Have you been taking the same brand of levothyroxine all the time?

Indygo profile image
Indygo in reply to crimple

Yes...

Nanaedake profile image
Nanaedake

Sounds like you need to contact the doctor. Have you checked your blood pressure? The symptoms you describe could be caused by a number of things. Have you excluded a virus and after effects?

Indygo profile image
Indygo in reply to Nanaedake

No, I haven't checked my blood pressure, but any time it was checked by a nurse it was normal.

Not sure what virus and what after effects?

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you currently taking?

Are you on strictly gluten free diet?

Or tried it?

Indygo profile image
Indygo in reply to SlowDragon

It's actavis.

Yes, I'm gluten free.

SlowDragon profile image
SlowDragonAdministrator in reply to Indygo

Most of us when adequately treated with Ft3 well over 50% through range will have very low TSH .....often well below bottom of range

If gluten intolerant then likely conversion of Ft4 to Ft3 is poor

Essential to regularly retest vitamin D, folate, B12 and ferritin

Make sure to get blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before

Important to stop taking any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results

Indygo profile image
Indygo in reply to SlowDragon

Yes, that's how I did it today and the test was at 8.

Thank you for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply to Indygo

Come back with new post once you get results....hopefully you can get dose increased without too much of a fight

HashiFedUp profile image
HashiFedUp

in my experience my TSH needs to be MUCH lower than 2.64 to feel well. You probably need to increase your T4 until you get your TSH down to the lower limit. So mine is often around 0.3 (where lower range is 0.2 for example). Keep going. It takes a little while to get the levels right and you do have to be very patient. Low mood is also very common - I had anxiety low mood and exhaustion before diagnosis. Remember to seek help if you have any bad thoughts. Private message me if you feel you would like some support. Theres alot around online and your GP should also help possibly by prescribing anti-depressants just until youre stronger with your thyroid condition. x

Indygo profile image
Indygo

Thank you!

Fingers crossed he raises my dose.

Lolota profile image
Lolota

Please, if you are feeling suicidal while on it just stop it and take an appointment with your Gp to modify the dose. Can you take some b vitamins above all b1, 2 and 3. Don't go overboard just like 10mg of each maybe. Try to eat more fruits and veggies like spinach, oranges.. Good luck. You will get through it.

jovon profile image
jovon

Hi Lucy, same with you im on very ill at this time for relying only Levo. Since January this year i felt unwell very bad condition of my health. I wad thyroidless since 2018.

carolcw profile image
carolcw

I was found to lack the deiodinase enzymes (genetic test ) that convert t4 to t3 and was very unwell on t4 only meds. I became increasingly depressed and had suicidal thoughts. I was very achy, more unwell as well. This was about 7 years ago. Tbh I came off them once the suicidal thoughts came in as that had been my only change. The depression went away . I went to see a private doctor who started me on ndt. Ive never got depression on ndt.

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