New to Levothyroxine and feeling terrible

Feeling very scared by what is going on and would love some advice. Sorry to ask as I have read lots of your messages and know that there are lots of people out there with much bigger problems than mine.

I went to my GP about 6-8 weeks ago after 2 years of a very red, swollen face, eyebrows falling out and lots of extra weight. He called me the next day to say that I was subclinical hypothyroid and needed to take Levothyroxine (25mcg) and also prescribed vitamin D. I was delighted to think that this was something that would solve the problem. However, the next 6 weeks were awful and I went from not sleeping at night to sleeping all night and needing to sleep all day too! All of my symptoms got worse and others arrived. I have just increased my dose to 50 mcg and have booked into a specialist in a couple of weeks. Only 4 days in and stilI feeling very tired and too scared to eat. I have read lots of information on this amazing site (have never shared any information about anything before, so am a wee bit scared) and am slowly working out what I think I need to do/think/ask for.

If anyone has any advice I would be incredibly grateful. I live a very normal life, probably drink too many glasses of wine, eat relatively healthily apart from having the odd cigarette.

My apologies for sounding so needy, but any advice would be very valued.

Thank you in advance.x

20 Replies

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  • Hi, welcome - everyone will say the same, so I will say it first - do you have your results and ranges from the diagnosis? If so, please post them here.

    If you don't have a copy, then if you ask your GP surgery they will give you a print out.

    Lots of very experienced people here (not me) will have sensible things to say then.

    Don't worry. Help is at hand.

  • Thank you. Will find my results and post. I think they are quite small which is why I thought it wasn't a big deal. Amazing and very confusing that such a small dose of Levothyroxine has had such a big impact. Thank you so much for replying.

  • Hello Puffyface

    Welcome to our forum and sorry to hear that you don't feel well.

    You are still in early days where your body needs time to adjust to the new thyroid hormones that it's been missing and this can take time.

    25mcg Levothyroxine is a very small dose so you may see improvement now that you are on 50mcg. Remember symptoms can lag behind good biochemistry by 6-8 weeks.

    Your doctor should test again after 6 weeks and adjust dose according to results.

    Have blood drawn early morning when TSH is at its highest and before meds for that day.

    Why are you too scared to eat? The body requires protein, fats and carbs in order to utilise the thyroid meds.

    Remember to take your pill first thing in the morning on an empty stomach, 1 hour before food, 2 hours before supplements and 4 hours before iron and calcium.

    I identified with your post regarding a red face as before medicating, I too had a very red face.

    I hope you start to feel better soon,

    Flower007

    Edited

  • Thank you for replying. I know that 25mcg is a very small dose, but who would have thought that such a little amount could have such a big impact on how you feel. Only worried about food because I seem to be putting on weight by the hour! Anyway, trying to be sensible about it all.

    Thank you for your help.

  • Oh Puffyface, it's really bad to diet until your hormones are completely balanced as you need all nutrients to metabolise thyroid meds and your body will just hang on to fat whilst your TSH level is high.

    Protein, fats and carbs are all important.

    Flower007

  • Yes, I agree Puffyface,

    It always amazes me how such a tiny pill is so powerful it can impact on our bodies make up at a deep cellular level and either make us feel great or so very ill.

    Flower007

  • Reduce the wine or you will end up like me with liver damage ,possibly the cause of balance problems and as the liver converts a lot of T4 to T3 it is possible that that process may be impeded. Faced with the facts I found it initially hard to go at least 3 days without alcohol .Had to start with one day and worked up.Next problem is to reduce what you drink when you drink.

  • Oh Treepie,

    That is sad and I think is the advice I will be receiving soon. I'm having a ultra sound scan on my liver this Thursday.

    Alcohol is bad for us all round anyway so I guess it is the sensible thing to do.

    Flower007

  • The odd thing is that my love of wine developed after I retired.Didnot have to get up at .6.30 so no harm in a few glasses and weekend wine became nearly every night.

    Good luck with the ultra sound ,it was the blood test that revealed my self inflicted damage.

  • Hi Treepie,

    I had my ultra sound scan this afternoon and the consultant said liver, kidneys, spleen and gall bladder all looks fine...thank goodness. I am so happy.

    He did emphasise though that the scan only shows no damage that they can see now and doesn't tell them the amount of stored iron in the liver so I am to watch my alcohol intake.

    This suits me anyway as alcohol is bad for my adrenals.

    Just had to tell someone,

    Flower007

  • That's very good news Flower, moderation in all things!

  • I am so stupid at this computer stuff that I can't work out how to reply to your post about good tests today. I hope this works. Sounds like great news. Do the results reflect what you are feeling? A good liver is good all round. Have a good weekend.

  • Lol. Thank you Puffyface.

    Head still has a way to go but yes, my body feels good.

    Flower007

  • Life without wine! Haven't drunk any for the last couple of days as I know it's not good (thank you) and also feeling too rubbish. BUT, at some point about 6 months ago (after a few glasses of wine) I agreed to go to Glastonbury tomorrow. Madness! I'm 45. I thought it was one of those things I should do if the chance came up. Now thinking it was the worst mistake ever - don't like mud and certainly not mud without wine! Can't wait until Monday!

    Thank you so much for all of your great advice. Hope you are ok?

  • I am sure you will love Glastonbury Puffyface.

    Weather is sunny on Saturday and not due to rain until later on Sunday (probably when we BBQ.)

    Well done for being young and down with the kids!

    Flower007

  • Not much to add to what the others have said, except that your weight-gain has nothing to do with what you eat. It is due to low metabolism due to low thyroid hormones. Not eating will make it worse! So eat!

    But! Don't eat breakfast on the day of your blood test, because eating lowers your TSH, and you want it to be as high as possible.

    So, leave 24 hours between your last dose of levo and the blood test; have it done as early in the morning as possible - between 8 and 9 - and Don't have breakfast before, just water. That way, you should get the best possible TSH. Have a slap-up breakfast afterwards! lol

  • I don't know how deficient you were in vitamin D, or how much you are taking now - but when I had the same problem, I started feeling worse for weeks after I started taking the prescribed supplements, and my symptoms seemed to be getting much worse. I was told that I could get worse before I got better - I don't know if that is a true statement, but it felt like that.

  • Great advice here and eating a healthy diet with protein is vital. I found it difficult to take other meds and vitamins without impacting on the Levo. However I now take it last thing at night and find it helps a lot because my body processes it while I sleep without any interference. This stuff is trial and error and you have to find out over time what works for you. The doctors can guide you but it helps if you let them know what works for you, rather than just trust everything they tell you. Oh and I am afraid you will feel much better without the vino!!!! Sorry.

  • Thank you all for very good advice. Starting to think about a sensible diet as I understand some foods are better than others for hypothyroid and will really cut down on the wine. Does anyone have any recommendations for a good book for Thyroid diet? Thank you again for all of your advice.

  • Also, my GP has suggested a specialist and I would love to know if anyone has seen him, or has any other suggestions. I think that there is a rule about not discussing doctors on this forum, but that it's possible to do it privately?? Any info would be appreciated.

    Thank you.

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