Thyroid UK

Why have I started feeling worse? :(

I've been taking 50mcg of Levothyroxine everyday for the past 2 and a half months. After the first month, I thought I was noticing a difference and it felt easier to get up/ be motivated. But for this past week, I've felt worse than ever. I can't even bring myself to get out of bed most days, it's taking me till late afternoon to get up, usually after crying because I'm so stressed that I've wasted a day. Also, I've never been prone to spots. But since taking this medication, I've had quite a few. Not a huge amount, but for my skin, it's significantly more.

Does anyone have any idea why this is happening and what I can do about it? It just gets me sad when I think that I'm 20 and I feel like I'm wasting away all my time because I feel so drained :(

2 Replies

If this is the first time you have been on levothyroxine, and 50mcg is the first and only dose you have been on, then your doctor should have arranged for you to have repeat blood tests after 6 weeks or so to test your dose is correct. If necessary your dose should be increased then your thyroid re-tested after another 6 weeks or so. Repeat this process until your symptoms are relieved..

Lots of doctors put people on a dose of levo then just leave them to rot without testing them for a year or more. If you read the Clinical Knowledge Summaries about hypothyroidism published by NICE, click on the Prescribing Information tab on the left hand side, then click on Start Dose and Titration. Your doctor hasn't been following the rules.

The way that the NHS treats hypothyroidism is sadistic. It is even worse if they don't even bother to follow their own guidelines.

The other thing that would help you is to get blood tests done for various vitamins and minerals that have a big impact on thyroid health, in the thyroid gland and in the body. The things that need to be tested are :

Vitamin B12, Vitamin D, folate, iron and ferritin.

Your doctor may refuse to do all these tests, but do the best you can. When the results are ready, ask for a paper copy of the results including the reference ranges. Without the reference ranges the results are not useful. Also ask for a copy of any thyroid function tests you have had in the past, again including the ranges. Get in the habit of ALWAYS asking for copies of results and reference ranges, and start maintaining a history of results, symptoms, treatments and dosages. It may be a huge hassle - but it will pay huge dividends in the future. It is also worth noting results if you ever get to a point where you feel really well - at least if things go wrong after that you know what you want to aim for.

Any time you have results and you are still not feeling well, post the results here and ask for advice - not just on thyroid stuff, but also vits and minerals.

Good luck!

1 like

humanbean is right. You should have had another blood test at six weeks with an increase in medication. It is our metabolism which is affected in hypothyroidism and lack of thyroid hormone affects our whole body from head to toe. We need enough T3 in each and every cell for us to be back to near optimum health. Levothyroxine is supposed to convert to enough T3 but we need optimum medication for this to happen.

Even though you are 20 (very, very young) you have to read up on hypothyroidism and also the questions and answers on this forum and you will soon know more than your doctor. When clinical symptoms start again after a dose increase, that's when you most probably need another one. When you are on the correct amount you should more or less have a normal life.


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