Taking Levothyroxine but still feel ill

Hi everyone. I'm 20 years old and I was diagnosed with 'borderline' hypothyroidism in April (though I have had symptoms for about three years) and given a prescription 50mcg of levothyroxine to take. Four months later and, if anything, I feel worse. My fatigue hasn't improved and just showering and doing my hair is enough to exhaust me for the rest of the day. I've noticed that it seems to come in 'waves'. At some points of the day I feel okay, I can function, but then the fatigue hits me like a train and I can't stay awake and I just feel terrible. I'm sure you all know the feeling I mean. Is it normal for it to come and go like that?

My memory is also shocking, it's a miracle if I can remember anything someone's asked me to do. I get that brain fog that seems to be a common symptom. There was a period just before it got really warm out that my feet were freezing cold 24/7, and more recently I've always waking up with pins and needles in my ring and little fingers which extends down my hands. Before it was just now and then it would happen.

I've also had really bad acne since starting levo. I haven't had it this bad since I was thirteen-ish? Even then it's usually just on my back but my face is absolutely covered. That's been really getting me down too.

My most recent blood test was about a month ago. And my TSH levels were fine, apparently. He didn't show me the results. So I'm still on the same dose of 50mcg, despite telling him I still feel absolutely horrendous - he just wasn't interested after seeing the blood work.

So I'm not really sure what to do now. I've been doing a lot of research this week and I'm trying to get my head around the other (limited) options that are available in the UK. It sounds like NDT would be really good for me but I'm 100% convinced my doctor a) wouldn't have a clue what that is and b) wouldn't prescribe it anyway. I remember him saying back in April that hypothyroidism is 'easily treatable'... yeah.

I'm going to be moving doctors soon anyway as my regular GPs are hardly ever in and I'm living in a different area now anyway.

Does anyone have any suggestions? I'm going back to college full time in September after taking a year off and I don't think I'll have the energy for it at this point. I can't take another year off. Should I see a private doctor? Keep pushing with my current GP? Are there any other options for medication?

I'm going to request for a copy of all my blood test results and if anyone thinks it'll help I can post them on here. Thanks and sorry for the essay!

12 Replies

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  • Welcome to the forum, Lauren.

    Your symptoms suggest that you aren't yet optimally medicated and may need a dose increase but we really need to see those results with the lab ref ranges (the figures in brackets after your results) to advise. Ask your GP receptionist for a printout and post them up. Most people do well on Levothyroxine when they are optimally medicated. NDT isn't licensed for use in the UK so it is rarely prescribed on the NHS and most people using it will be self-medicating and buy it on the internet.

    Pins and needles can be a carpal tunnel symptom, common in hypothyroid patients especially when undermedicated, but it can also be a sign of low or deficient B12. Ferritin, vitamin D, B12 and folate are often low/deficient in hypoT patients and cause fatigue, muculoskeletal pain and low mood. Ask your GP to do blood tests.

  • Thank you - I will get a hold of those results early next week and post back :)

    Also, would seeing an endocrinologist on the NHS be at all beneficial?

  • Lauren, If your GP isn't able to help you an endo can be beneficial if you can get your GP to refer you. email louise.warvill@thyroiduk.org.uk for a list of recommended endos. When you find someone you think may be suitable you can post a question asking whether members have experience of the doctor and asking them to let you know their experience via private message.

  • Thanks, I will do that now :)

  • One of My Grandaughters age 19 was in the same boat ...thankfully she got a referral to a good Endo who started her on T3 and did a battery of tests and will follow through with NDT if she proves to be like the rest of the family and unable to tolerate Thyroxine or T3

    You need to insist on getting the actual test results and reference ranges for whatever tests you GP has done

    Also its vital that

    Ferritin

    Folate

    B12

    Vit D3 are tested

    Ferritin is highly likely to be way below the minimum of 70 that it MUST BE or your body is unable to make use of the levothyroxine and convert it to the T3 your cells are screaming for

    I suspect this may be a major part of why you still feel so ill

    Theres research papers on this to give to your GP

  • Thank you, I'll try to make sure those get tested too :)

  • Hi Laurenv,

    I started taking 50mg Levo in February, and like you have actually got worse. I kept going back to the drs, but it was my dentist who suggested I might be deficient in iron & b12. He was right! Seems these and other nutrients ( which were already low but 'in range') suddenly took a huge dive when I started taking Levo. I'm on iron & had loading b12 jabs and I am beginning to feel a bit better, though I know it will take time to build up reserves and repair the damage done.

    It's a long road ahead, and it can feel very lonely at times, but there are lots of really helpful people on this site to encourage you and give advice.

    My advice would be to get as much info as you can, get a print out of your test results and when you visit the Drs, be prepared and confident to push for help till you start to feel better.

    In the meantime, try not to let this take over your life ( easier said than done!) Enjoy the times you feel well without over doing it. Find new things you can do that don't wipe you out. I've taken up painting pottery - it's very therapeutic!

    Keep going, better days are to come and when they do you will really know how to appreciate them!

  • I do take a multivitamin from the supermarket that contains iron and B12 - I'm guessing that's probably not enough though.

    It's definitely lonely, which is why I'm really keen to get back to college in September. My friends don't really understand what's wrong, even though I've had problems with fatigue for as long as I've known them. That's life I suppose. This site has been very helpful so far :) Thank you for your kind reply.

  • HI Laurenv. Yes mine all started with pins and needles , numbness, and esculated into aches and pains in elbows, knee joints, every joint in my body and I was so weak I could not even lift my frying pan without using both hands. My lifting strength was nil. I feel completely better now on 125mcg Levothyroxine. I do 3 keep fit classes per week, lost 1 stone in 12months, and have got bags of energy and loads of enthusiasm. Its hard going these days getting the right treatment, when GP practices are trying to save money. One would wonder if you are on the right dose of Levo or if it is only one part of your problem. Skin problems ie acne type, are not commonly related to Levo, more likely to be your age and hormone related problems in conjunction with your underactive thyroid. If your skin is really bad and getting you down, go and ask the doctor if you can see a specialist dermatolgist, if he is not sympathetic to your immediate problem. My daughter who suffers very badly with hormone imbalance had to go privately, now she is on Raccatone which is said to clear the skin in approx 6 months. So far so good, showing great results. Sometimes the contraceptive pill can cause skin problems and weight gain, ( but you don't say you have a problem with your weight )

    You are going to have to be bold with your doctor, and make a list out of all your current symptoms. That way he will know you mean business and not only is this helpful to both of you given that most appointments last only 10mins he will take you more seriously, next time you visit. Good luck with the doctor and remember you will have to go through him if you want to see a Specialist in any field privately so you need to keep a good relationship going with him, and don,t give up until you get this matter sorted. It is life altering to have an on going illness at the tender age of 20, when you should be out there making your way in life.

    Good Luck

  • Good for you :) I'm glad to hear there's a positive story from levothyroxine.

    It's just very strange re the acne, my face had been almost totally clear except for the odd spot here and there for about four years, and now it's the worst it's ever been. I've been on the contraceptive pill (Loestrin 30) for around the same length of time, so maybe it's just not effective anymore? Perhaps I should change to another type. I've got two family members who have been on Raccatone and it's worked well for them so maybe that's something to consider if it doesn't clear up.

    I'm seeing my GP again on Wednesday and I'll try my best to push my case. Thank you for your reply :)

  • Please try to be a patient patient, your GP should test your blood every six weeks until your TSH is under 1 and your free t4 needs to be at the top of the lab range. Your B12 above 500. When most of us take a starting dose of 25 or 50mcgs you do not feel improvement. It can take a while for everything to get back to normal.

    Sue

    thyroiduk.org

  • Hi, it's me again. Sorry for the late reply but I've had a lot going on including a minor surgery (unrelated to my symptoms/thyroid).

    I spoke to my doctor and had blood tests for TSH, T4, B12, ferritin and lots of other things and they all came up 'normal'. I don't have the exact figures as I was told over the phone but I plan on getting a hold of them when I'm there tomorrow. I'm bit disheartened and confused to be honest. Is it common for levels to be normal but to still feel so awful? Or could this be something else entirely?

    My doctor's agreed to refer me to an endocrinologist but the he will be looking at my test results to see whether he thinks he can help me so I'm not holding my breath on that. The doc also said if the endo said so he would prescribe me T3, so there is hope for that.

    I tried to get copies of my test results last week but the receptionist at the time didn't really understand what I wanted (and not very good at using the computer either) and I couldn't get a print out of them. Again I'll really push to get those results when I'm there tomorrow.

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