My symptoms are worse!

I appreciate that after being on Levothyroxine for just one month at 25mg is not going to work wonders. I had my first updated blood test and my dose has been doubled to 50mg. Oh my goodness. I have the most awful muscle cramps and terrible fibromyalgia pain. I'm crying continually and feel very very low..I guess that could be the pain causing that. Are increased symptoms usual? I know I can't go on like this as I feel very dismal. The thought of being on medication for life is really getting me down too. I guess I'm being wimpish! I know there are plenty of others suffering as well! However many times I ask the GP I do not get my actual blood test results. I know my iron levels are fine that's it. Is there anything I can do to help myself more than I'm doing?

6 Replies

  • I'm sorry you are feeling so bad at the moment. You shouldn't have to feel this bad!

    You are entitled to your blood test results. Call your surgery and ask for them over the phone. If they won't give you them, state that you are entitled to them (nicely of course) and could they tell you how you can obtain the actual results complete with reference ranges. This is one of the most important things you can do to take control of your health.

    Once you have them, post them on here so people can help you to interpret. "Normal" isn't the same as optimal. That goes for iron tests too. Your ferritin really needs to be around 70-90 and your TSH below 1

    Have you had your vitamin D tested? A very high percentage of people in the UK have a deficiency, or at least an insufficiency, and this can contribute greatly to any pain, fatigue or depression you may be experiencing. I noticed a significant improvement in my health once my vitamin D levels increased.

    Vitamin B12 is another one to look at. You really want this to be above 400 or 500 depending on the reference range. This is quite a bit more than the bottom of the NHS reference range so you will have to supplement yourself unless you are below the reference range, in which case they should prescribe B12 injections.

    Cortisol levels might also be an issue and this might be part of the problem with the levothyroxine. If your cortisol levels are low you may find you are not converting the levo very well and T4 is building up. This can cause horrible symptoms too. The best thing to do is a 24 hour saliva cortisol test as this tells you what is happening to your cortisol levels throughout the day. If this isn't an option for you (it is a private test so has a cost) you could ask your GP for a serum cortisol test. If you get the test as close to 8am as possible, the result should be at the top of the range. If it isn't, your morning cortisol it too low and you likely have non-optimal levels at other times of the day too.

    Do you take your thyroxine in the morning or at night? Many people (although not all) find they do better when they take it at night. There was some research on this not long ago that suggested it is better taken at night for many people.

    I hope this gives you a few ideas of where to look. If none of the above helps, it may be that you need something other than levothyroxine.

    Take care

    Carolyn x

  • I'm going to bookmark this and do all you suggested. I take the meds in the morning as I was told to but will change it to the evening as you suggest, THANKYOU for your help.

  • You're welcome. I hope something works!

  • Any suggestions as to how I can help the muscle cramps and fibromyalgia pains. I'm running out of ideas and of course if you feel negative it makes things worse:-(

  • Have you tried magnesium? As long as you are getting enough calcium in your diet, you should be fine to try a magnesium supplement although it would be a good idea to check online to see if there are any conditions where it is contraindicated. Most people should be fine with it though.

    Magnesium citrate is the gentlest oral supplement. It is the most easily absorbed so it is less likely to cause loose stools. It is best to start with a lowish dose of around 200mg and increase after a few days if you have no adverse effects if you need to. If you can't tolerate that, there are sprays and creams or you can get epsom salts from the chemist and put them in the bath. Magnesium is absorbed very well through the skin so you can get all you need that way. Having a soak in the bath of epsom salts may help in it's own way too.

    Taking magnesium helped me very much with my insomnia. It helps to reduce night time cortisol and helps to relax the muscles, and also the mind - or so it seems.

    It might be an idea to get your sodium, potassium, calcium and magnesium tested. An imbalance in any of these can cause cramps and other symptoms such as fatigue, anxiety etc.

    I hope that helps :)

    Carolyn x

  • Vitamin D supplements worked for my joint and muscle pains (part of the reason GP suggested CFS/ME) - worth getting a test to see if you are low anyway.

    as well as the other nutrients etc. Carolyn as suggested J :D

You may also like...