Worsening symptoms

[RachelS0822]

Hello all,

I was just diagnosed with hypothyroidism and have been taking levothyroxine for about 9 days now. My symptoms are so much worse. I'm currently laying in bed and can barely move-I had to call into work today. I feel like I haven't slept in ages and have absolutely no appetite. Does it get worse before it gets better? I'm so sick of feeling like this!

[Hidden]

There is no way of telling as we are all different...I know it sounds like a cliché, but there really is no way of telling how anyone will react to a given drug. However, since it's only been nine days since you started on T4, it's too soon to tell if it's working for you or not. I assume you were put on a starting dose (50 micrograms or possibly even 25 mcg)? That dose may be too low for you to notice any real difference.

Do you know the reason you are hypothyroid (autoimmune disease etc)? When are you scheduled to be retested? When you start on levothyroxine, you should be tested every six or so weeks until you find the right dose for you. That is when your FT4 levels are close to or at the upper normal lab range, to ensure that enough T4 is converted to T3 provided you are a good enough converter, your TSH around 1 or even lower if you have autoimmune hypothyroidism, and you no longer display any symptoms of low metabolism. There is no telling which dose you will need in the end (maybe T4 only is not the right treatment for you), but it's very important that you are retested soon, especially if you feel this bad.

Also, there are many things than can interfere with T4 to T3 conversion and make levothyroxine work less well for you: low iron and ferritin levels, vitamin B12 and vitamin D deficiency, and low cortisol levels, just to name a few. The latter is known as adrenal fatigue and is quite common in people who have been hypothyroid for some time. All those deficiencies will need to be corrected in order for thyroid hormone to work optimally and reach every cell in your body.

Do you have any recent lab results that you could post here for members to comment?

[shaws Administrator]

Unfortunately, yes it can happen that we feel far worse than before being diagnosed.

Has your doctor started your on 50mcg of levo? It is taken on an empty stomach with one full glass of water and wait about an hour before eating. Usually most of us take it when we get up and others at bedtime. If bedtime dosing, you have to have last eaten about 2.5 to 3 hours before as food interferes with the uptake.

You should have a blood test every six weeks, fasting (you can drink water) and allow a gap of 24 hours approx between last dose of thyroid hormones and the test and take it afterwards.

Blood tests should be taken every six weeks with a 25mcg increase until you feel well with relief of all symptoms.

Doctor should also check B12, Vit D, iron, ferritin and folate as we can be deficient and everything has to be optimum.

Always get a print-out of your results with the ranges and post if you have a query.

We have to read, learn and ask questions if we are to get better. I'd get a sick note from GP for at least a couple of weeks but they don't really understand how bad we feel. We have to do learn ourselves with the help of members mainly. There are lucky people who take it all in their stride and wont be on this forum.

You should improve as levothyoxine is slowly increased until you have relief of all symptoms.

[Pamela0106]

I feel your pain. 😓

If you haven't already done so, could I ask you to read and sign this petition to help stop the withdrawal of T3 from the NHS? If be super grateful.

change.org/p/itt-campaign-g...