Why do I feel terrible could sleep all day skin flaky getting sores on my lips, moody and forgetful, TSH level is 1.14 and B12 low

Dr says the way I feel is not related to my thyroid, I am taking 100mcg lever-thyroxine I also take selenium everyday which I take first thing with water. I do not know my B12 result he just said it was slightly low so has given me 50 mcg to take twice a day.Last time they checked my thyroid was 2.28 and I felt much better. But I am always told it is normal yet I do not feel normal I have no energy and am very emotional.

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20 Replies

  • Your symptoms sound like clinical symptoms of hypothyroidism. GP's are unaware of them and usually say, if your bloods are 'within range' that it's nothing to do with your thyroid gland.

    You say you felt better when your TSH was higher, so do you think if you reduced levo slightly by 25mcg that you might feel an improvement as that would cause your TSH to rise?

    I know selenium helps the thyroid gland but I note you are taking it at the same time as your levothyroxine. It is usual to take levo alone with a glass of water and leave up to an hour before breakfast. I take my supplements at lunchtime away from the levo. Some things interfere with the uptake of levo.

  • I am taking 100mcg of levo and today have been given 50mcg of B12

  • I was diagnosed 9 years ago after I had my child and I lost 2 stone also my hair fell out, I have always had trouble sleeping, not needing much now I can not stay awake I fall asleep at my desk so I went for a blood test the last test was tsh 2.28 and it is now 1.14 would this cause my symptoms my Dr said no - the only test that came back low was my B12 ( I do not know the level) he also said that would not be the reason for my symptoms, I am at my wits end I can not function like this.

  • Hi

    I think if your G.P. said your B12 is low then it must be low as even if its low in range they usually say its O.K.

    You need to ask him for the level and the range then post on here for further advice.

    If you are in fact under the range then you should qualify for B12 injections.

    Low B12 can give you awful symptoms like yours, It needs to be in the top quadrant of the range for your thyroxine to work properly. Did you also have your folate, iron, ferritin and Vit D tested as these also need to be top quadrant as well.

  • Dr Toft of the BTA says that:-

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l."

    He also goes on to say that if the patient is still complaining an addition of 10mcg T3 could be tried with a 50mcg reduction of levo.

    If you want a copy of the Pulse Online article, email louise.warvill@thyroiduk.org.

    This is an extract and it made me wonder if you are on the correct medication as you are on levo and still falling asleep although this person was undiagnosed at first:-

    I became increasingly tired and fatigued, and chalked it up to stress and tried to deal with it. Nothing doing, though, and things got bad. Even though I was getting 10+ hours of sleep a night and felt fine as long as I was moving, I got drowsy and would fall asleep whenever I tried to sit still and concentrate.


  • Wow that does sound like me.

  • if you email louise.warvill@thyroiduk.org and ask for a list of sympathetic NHS Endos/private doctors, one of whom may be near you and ask your GP to refer you.

  • Ok I have emailed thanks and I will keep you posted.

  • I am exactly like your last paragraph. I had my Thyroid removed on 28th January I have been on 125, 150 and now on 100mcg I sleep at least 10 hrs at night and have 2-3 hrs during the day.I feel like I am in a permanent fog!

  • Hi Sun3, Yes I feel the same even with all my sleep I am constantly groggy, I ache just walking upstairs!

  • Yes I ache going up the staires and if I iron for 30mins I can't then stay awake it's so frustrating!!

  • This is a scientific report. It may be a little in depth for us but you will see the reason is that many of us are kept 'within normal range'. I am hypo but I can not understand why people who have no thyroid gland at all do not get prescribed NDT which contains all the thyroid gland hormones you're missing. Why cannot we try an alternative ,NDT or T3 for instance if we're not getting well on levo.


    If you get a copy of your most recent thyroid gland blood tests, with the ranges, and post on a new question for advice. Also, if you haven't had a Vitamin B12, Vit D, iron, ferritin and folate ask for these to be done.

  • Hi Browny,

    Thanks for advice I will go in tomorrow and ask for all my results from the recent blood test and post on here,Very confused and feel that they just fob me off I certainly dont feel normal even if my results are in the "normal range!"

  • see my reply above to linzidepp

  • Hi linzidep, it worries me that your GP says your B12 is low, because that means it could be very low, and like others have said you may need 1,000mcg of hydrocobalamin injected.

    Have you been given Cyanocobalamin out of interest? This type of B12 is only useful if you don't eat the animal products that contain B12. The dose is far too low.

    The reason why I'm drawing your attention to this is the exact same thing happened to me 10 years ago. I should have had injections, and now have damage to my nerves in my legs and feet. The best B12 orally is methycobalamin as it's the active form. You can get it in sublingual tablets @ 5,000mcg.

    Please get your serum test results. Also you folate is likely to be low along with iron. You must supplement folate and iron if they are low. The B vits work together, so a good B complex supplement is vital. If you're folate is very low your doctor should be prescribing you 5mg of folic acid for a 4 month period. You can't use your B12 properly without a good level of folate.

  • I am on Cyanocobalamin 50mcg. My B12 was 141 I am told the range should be (150 - 620) they said everything else cam back satisfactory IE Iron etc...

    My last TSH results are below.

    18/03/14 - 1.14

    4/9/13 - 1.91

    2/7/13 - 9.37

    9/5/13 - 1.59

    29/04/13 - 0.23

    All taken at about 11am - 12pm

  • Hi linzidepp, are you a vegetarian? You should only have Cyanocobalamin if you are. You could have been B12 deficient for a long long time with your low results. You are definitely at risk of nerve damage and need to go back to your doctor and ask for injections. Have a look at the NICE guidelines for B12 and folate deficiency, print it off and stick it under your doctor's nose. I cannot emphasise enough with that incredibly low level you need 1,000mcg of hydrocobalamin injections, if you have nerve involvement that would be an injection every other day until you feel no more improvement.

    My daughter has Pernicious Anaemia like myself and her levels were like yours and she had to battle with her ignorant doctor for injections, which she is now having regularly for life, like myself. We both have hashis too.

    Your iron/ferritin must be low, as your cells pinch iron when your B12 is low. Folate too, you need that to be around 12.

    I have awful symptoms and pain now from being treated with low dose cyanocobalamin instead of injections, you need to avoid this obviously.

    Great support on the B12 deficiency/Pernicious Anaemia Support Group Facebook site, or it could be the other way round Pernicious Anaemia/B12 Deficiency Support Group.

  • Hi Take Helcasters advice. You are officially under range so go back to G.P. and insist on injections

    Best of Luck browny

  • get the doc to check you for other autoimmune problems too...get an ANA test. I have mild lupus with similar symptoms...and also hypothyroid.

  • Were the two blood test you had done at the same time of day? Had you taken your medication before the test? TSH changes during the day by quite a lot so the two numbers you have quoted might not be directly comparable. If the two test were done at the same time of day then it seems that either you need less thyroxine to feel well (unlikely) or there is something else going on - the low vitamin B12 might be the cause, or you might be low in iron or Vitamin D (my doctor says most people are Vitamin D deficient at this time of year).

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