Levothyroxine

Hi all,

I'm really struggling ๐Ÿ˜ž

18 months and still no better.

My t4 is at the lower end of 'within range'.

I take 25mg levo and have tried upping to 50 on two occasions but felt worse; palpitations, chest pains, sore throat and anxiety.

I'm unsure if levo is working for me.

I'm literally desperate, I can barely walk my son to school.

My next appointment with my NHS endo is not until JULY. I wish I could afford to

Go private.

Any help or advice greatly appreciated. Or help with things to ask my endo.

Laura xxx

Skip

Featured Content

Living with a thyroid disease?

Connect with people like you to get support, advice and tips towards improving your health.

Get started

Featured by HealthUnlocked

19 Replies

oldest โ€ข newest
  • Laura, your 25mcg dose of levothyroxine wont do much good if you've been on it for 18 months. Too low a dose can backfire and make us feel worse.

    You say you've tried to increase dose and felt worse but the usual starting dose is 50mcg with 25mcg increments until we feel well, but of course doctors only look at the TSH and if it is somewhere in range do not increase dose.

    If you increase from 25mcg to 50mcg and you get palps etc instantly, or a day or two later, it will not be due to the 50mcg as it takes at least about 4 weeks for the extra 25mcg to be absorbed.

    Someone, more knowledgeable than me will respond if my statement above is wrong.

    It can be the fillers/binders in your levo which can be affecting you and if you try taking an anti-histamine 1 hour before levo and don't have a bad effect, then change your levo to another make.

    I'd suggest a new appointment, the earliest possible, fasting (you can drink water) and allow 24 hour gap between last dose and test and take afterwards. Ask for TSH, T3, T4, Free T4 and Free T3. Probably the frees wont be done as labs only usually do TSH and T4 as the belief is that these inform us optimally but they dont as FT4 and FT3 are more accurate about what is actually in our system. Read about FT4 and FT3 in the following:

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

    Everything in our body doesn't work if dose is too low or hormones not optimal or we have a sensitivity to the replacement we are taking.

  • Thankyou for taking the time to reply ๐Ÿ˜Š.

    Taking the antihistamine is a really good idea and I might try that before attempting a 50mg tomorrow.

    I really feel I need a higher dose but due to past experiences I'm scared! I dont want to feel worse.

    Do you know if the NHS will freely offer me a different make of levo?

    I'm tired of the battle I have at every appointment. X

  • Yes, we ask the pharmacist to source a particular one as some give us a different one each time.

    You're right it is a battle and an uphill one at that.

    That's why many on this forum Do It Themselves.

    P.S. before blood tests and levo were introduced as 'perfect' we were diagnosed upon symptoms, given NDT and dose was increased until our symptoms relieved. Doses then were between 200 and 400mcg.

  • thats interesting. 6 years ago when doc worked out my hashimoto with one look - then tests - and put me back on meds after 5 years off he said sternly 'do not ever reduce dose, it will get higher with age'. his levo level for me then was 200mcg but i switched to 180 ndt under his supervision and was doing great. thereafter everytime i have been dropped or switched it has been a drama and my health has taken a dive it never fully recovers from -

  • Hello, I just wanted to give you an update and thankyou for the antihistamine advice. Yesterday I woke early and took an antihistamine. Two hrs later I took 50mc of levo. I didn't get the usual chest pains and palpitations I get when taking 50.

    Tomorrow im going to the pharmacist to pick up some more levo and I'm going to discuss with them my situation in the hope of them prescribing me a different brand.

    I'm hoping this could be my answer and looking forward to getting my levels up and hopefully start to feel well again. It's been a long 18months and even diagnosed with fibro, when it could be simply I was having an allergic reaction to the meds! Thankyou xx

  • I hope you continue to improve. We have sometimes go on a rounabout way to find a generic levothyroxine that suits us. We did have a Brand name but it was removed. I'm not sure if they have introduced it again in the UK. It was called Eltroxin.

  • dont know why but synthetics react badly for me, every time. minimal dose in other countries is 65 so you can see that your starter dose is nothing more than an irritant (established)

    best wishes

  • Thankyou... I've been two days using a different brand (wockhardt) and haven't had the usual symptoms (palps, chest pains etc) so fingers crossed this one doesn't react badly for me and I can start to get my thyroid under control! X

  • Lbstyle,

    Try 25/50mcg alternate days. Once you can tolerate that you can then try 50mcg daily. It may also be worth trying a different make of Levothyroxine. I found Mercury Pharma increased my palpitations and agreed with my pharmacist that they would only dispense Actavis or Wockhardt. There are 4 makes available in the UK:

    Mercury Pharma 25mcg, 50mcg & 100mcg.

    Actavis (also known as Almus) 50mcg & 100mcg.

    Wockhardt 25mcg.

    Teva 12.5mcg, 25mcg, 50mcg, 75mcg & 100mcg.

    It would be a good idea to have ferritin, vitamin D, B12 and folate checked as low/deficient levels can present symptoms very similar to hypothyroid symptoms and low iron can make it difficult to tolerate Levothyroxine dose increases. Your GP can order the vitamin and mineral blood tests or you can order them privately via thyroiduk.org.uk/tuk/testin...

  • Thanks so much for taking the time to reply. The information about the different makes of levo is very useful. ๐Ÿ˜Š

    I have treated a vit d deficiency and raised it from 19-98, still taking 10,000 iu per day ๐Ÿ˜Š

    I'm currently treating a calcium deficiency now.

    I had some of those tests done:

    B12= 388ng/L

    Serum folate= 7.0ug/L

    Serum ferritin= 24 ng/L

    Do you have any info on those? My gp hasn't alerted me to anything regarding these levels however I always get copies of my blood tests x

    TIA xz

  • Lbstyle,

    VitD 98 is optimal and now that summer is here you should be able to increase levels naturally. I would stop supplementing now and resume supplementing a maintenance dose of 5,000iu alternate days Oct - April.

    Unless you have symptoms of B12 deficiency 388 is probably fine. You could supplement 1,000mcg methylcobalamin to raise levels.

    Do you have a range for folate?

    Ferritin is optimal half way through range. Many people think it needs to be 70-100 to avoid hair loss and to aid absorption of thyroid medication. You can increase ferritin by supplementing iron with 1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine.

  • I think I have some symptoms of b12 deficiency but I'm unsure if it's just the underactive thyroid. I was, however diagnosed with gastritis four years back so it makes me wonder.

    Is methylcobalamin a type of b12 supplement?

    The range of folate is 2.5- 9999.0

    Again, thanks for all your replying it's a great help ๐Ÿ˜Š

  • Lbstyle,

    See b12deficiency.info/signs-an... If you have symptoms go to healthunlocked.com/pasoc for advice before you start supplementing.

    Yes, methylcobalamin is B12. Folate 7 is within range but is a bit low. If you supplement methylcobalamin I would take a B Complex vitamin too as this has some folic acid or folate in it.

  • P.s I just checked my levothyroxine make and it is indeed mercury pharma.

  • Lbstyle,

    Ask your pharmacist to trial Wockhardt or Actavis. Teva has similar ingredients to MP.

  • I was left on 25mcg levo for about 18 months and needed to pay to see an endo, as my former GP said I had no clinical need, despite low heart rate, cold, dry skin, no energy, etc, as my TSH was in range. The endo needed all of 5 mins to feel my cold hands & test an elbow reflex to realise I was on way too little. He put me up to 50 and said I could take 25/50 alternate days if I was nervous about palps, etc. He then said I was to see him on the NHS! I eventually got up to 75mcg levo, then discussed switching to NDT, as I still wasn't better. He would only prescribe it privately but he did say I could buy it over the Internet - which I do. He still monitors me on NDT on the NHS. I take 3 grains, which costs me about ยฃ75 a month. I did start off with a cheaper Thailand brand but I didn't like the fillers. Follow the advice above and don't take no for an answer from your GP. I couldn't really afford to see the endo privately but best thing I ever did.

  • Thanks for your reply. I'm hoping to get some money together to see a private endo ๐Ÿ˜Š hopefully sooner rather than later. So are you feeling good on NDT? And can I ask the website you buy from? For future reference xx

  • I'll have to private message you.

  • PMed you

You may also like...