Help please

Diagnosed hypothyroid in October. Started on 50 mcg Levothyroxine for 6 weeks and increased to 100 mcg 3 weeks ago. Still no change in symptoms. Only improvement is my scalp has stopped itching. Arms and legs feel heavy as if weights attached and by the evening I need to haul myself upstairs to bed on hands and knees. Any tips on when to take medication for best effect. Told has to be taken on empty stomach first thing in morning, and no food 3 hours before or after which rather limits my choices. I also have a raised itchy rash on left shin, very localised and GP no idea at all....is this related do you think? Immune system turning on itself maybe. I feel no one is listening to me and am almost in total despair as I have gone from a very active healthy person to practically an invalid. GP says my blood work shows improvement, but I am not feeling any. I have dogs I can no longer walk, I am so unhappy.

24 Replies

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  • I take mine at bed-time - with nothing for a couple of hours before. Some fidn that better; others do better with morning.

    Three hours gap is a bit more than you really need - except for things like iron and calcium medicines/supplements.

    We keep saying to new people to also get checked:

    Vitamin B12

    Folates

    Iron/ferritin

    Vitamin D

    Full blood count

    And always get your test results and reference ranges.

  • By using far too many words, as usual, I have managed to say roughly the same thing but taken far too long about it. "Motor mouth" was apparently quite a good nickname for me :D

  • Hopefully the original poster will be able to read both and make sense between them! :-)

  • Some people find taking their thyroxine at night, at least a couple of after food, gets them better results.

    You may still be under-replaced. Do you have your blood test results? If not, ask your doctor for them with reference ranges. You are entitled to this information. Unfortunately "normal" is a term applied to results within a very wide range whereas, in reality, we each have a rather narrow range at which we feel healthy.

    It may also help you to look into adrenal fatigue or adrenal insufficiency on the internet. You may find that your adrenals have suffered as a result of your thyroid problems, giving you worse symptoms. Luckily there are a lot of self help measures that can help, like taking vitamin C, eating a healthy diet, resting with your feet up where ever possible etc.

    It would also be advisable to have the following tests as deficiencies in the following can cause similar symptoms and can also hinder your body's ability to use thyroid hormones:

    Serum iron (needs to be well within range - not low end of range)

    Ferritin (above 90 is ideal)

    Vitamin B12 (really needs to be above 500, not just the 180 that the NHS state!)

    Folate (around 12?)

    Vitamin D (needs to be above 80)

    I hope this helps to give you some ideas as how to proceed next. Many people do get well on thyroxine. It's just a case of finding the right dose and making sure you are getting all the vitamins and minerals you need.

    You will find more information on the main Thyroid UK website thyroiduk.org.uk/tuk/index....

    Best wishes

    Carolyn x

  • thanks to both of you...It's nice to know I am not alone. I will try the advice....my next chekup with GP is 7.Jan and I shall be stamping my foot for more info as well as showing him these comments.....watch this space.

  • The raised rash could be pre tibial myexedema, most doctors have never come across it or made the connection.......

    If it is, it is definitely connected to the thyroid problems..... do a search for pictures, and check out this link: uptodate.com/contents/preti...

    Take the meds last thing at night, and no where near calcium or iron.....

    G x

  • I have checked out the pictures on the web and it does seem this is likely as it is a localised rash on one shin..thanks for the info I will show this to GP on next appt.

    I am so glad to have found this site. After trolling round mostly american ones it is nice to hear from the Brits but I am shocked that GP's have so little understanding of this condition. It affects 1 in 10 women which is the same as breast cancer yet the symptoms don't ring any bells. I have a nice doctor who is open to me having my opinion on how I am treated but hasn't a clue as to why my blood levels are improving but my physical symptoms are not. They are in fact worsening if anything. I want to self help if I can, so am going to up the vitamin intake for starters. A Reflexologst told me to increase vit c and zinc to improve my immune system. She is more clued up than doctors. I take B complex and Vit d already.

    Thanks to you all once again, I am open to any advice, suggestions, experiences you can offer and feel much less alone now I have read some fellow sufferers blogs. I was starting to spiral down into a real depression.

  • What I'd like to know is, do these GPs ever do any kind of research? It's not as if they have to work all the hours God sends any more, they all have out-of-hours backup etc. I'm sure not every patient they see in any given day will present with new symptoms. I suspect the vast majority of GP appointments are very much routine, minor ailments or follow-ups or something. If that were me I'd be looking it all up so I can be more informative at the next visit! Ah, well.

    I won't repeat the very useful advice given by others, but I will add a little of my own.

    Now, I know I repeat myself (Like CarolynB I'm a typical hypo motormouth) but 'Understanding Thyroid Disorders' by Dr Toft, page 88, is very useful to wave in the doctor's face when he starts telling you that your 'numbers' are normal. It tells him the TSH range to aim for - and, for a hypothyroid person it's very low in the .normal range, he quotes 0.2 TSH as a level at which most will start to feel better, but maybe even lower. I don't agree with everything he says but that paragraph is gold dust.

    Why do doctors keep telling people to take Levo first thing in the morning? Levothyroxine is more effective for most people (if it suits you at all) last thing at night, it gives the body time to use it in readiness for the challenge of the morning(!) and the food timing is not an issue then, unless you habitually eat after 8 or 9.

    Unfortunately a change in dose does take a while to work .I had a Levo increase about 3 weeks ago and so far only very small changes. It shows in the blood faster than it shows in your symptoms.

    Welcome to the party, pal! It's lovely to have you, Nil illegitimi carborundum (don't let the b******s grind you down)!

    MarieXXX

  • wow....thanks.... another supportive response...keep 'em coming

  • I was diagnosed 15 years ago and have put up with feeling down, tired, and loads of other symptoms only after being on this site and asking for results etc and saying I wanted a referral (mainly down too the migraines that I get which I feel is related too my thyroid problem), have I been given a different medicine which didn't seem to exist until i questioned it with names etc,which i got off this site, I don't know if this will work but its worth a try and wish I had been more persistent, and feel probably just been left too get on with it as I hadn't made a fuss, I also requested that I stopped the thyroxine as the migraines have been unbearable, I wish you luck everybody here can understand how you feel, try and keep positive and my advice is to be persistent, have a happy christmas and I hope you get better in the new year, k

  • I have had my thyroid problem for 5 years now, I am on 125mg of thyroxin and still feel like a bag of rubbish, my hips are now playing up with my back and my joints hurt like nothing else, I try to tell my doctor and he just looks at me with that patronising smile and tells me what I want to hear but in fact he does nothing apart from think I am an hypochondriac, I have asked for all the tests and he says yes on the next blood test and then he don't, I see a psychiatrist as I don't know how to cope with it all, but she not really helping as she don't understand thyroid problems, please help me from a despairing person

  • Hi storm1 - really sorry to hear you are having such a bad time. This time last year I felt dreadful too but am so much better now following advice on here, so please don't despair.

    Do you have any test results that you can post on here (together with the ranges - these have to come from your own report as they vary by lab)? I know you say you have asked for all of the tests and the doctor hasn't done them, but if you do have any at all it would be really helpful.

    Clare xx

  • hi claire

    I will ask him next time I am there do I just ask him my range ?

    thanks from a fellow Claire xx

  • I would ask now to see an endocrinologist. My son is hypothyroid and after months of no improvement, I asked the GP and she referred him immediately. He then had a raft of tests to check his endocrine system, so at least other stuff was ruled out and we know where we are. All the best, hope you feel better soon.

  • I am sorry to hear your troubles, and they sound similar to mine. It seems doctors just don't know or care about thyroid problems. I am going to start demanding action from now on, even my local pharmacist has told me that you need to get tough with your gp and ask for a referral to a specialist.

    Good luck. At least like me you know you are not alone.

  • Good advice from everyone but I think that you have to give the levo time to get in to your system and do its work. 2 months really isn't really very long. I was told that for as long as you have been feeling ill it can take just as long to be well again. I did reply to that saying that I would be about 90 by then. lol I do hope you start to fell better soon.

    Jo xx

  • Hello

    Don't despair, you are in the right place for excellent advice and knowledge here at Thyroid UK. About three years ago I started on 50mcgs levothyroxine as I had been feeling so awful. It took quite a while for me to feel better. I am now on 125mcgs and as long as my TSH level is below 1 and my free T4 result is in the higher range, I feel fine.

    It is my experience and others that in the cold weather you need more levothyroxine as your metabolism has to work harder to keep you warm and therefore needs an increased dose. I have symptoms at the moment, extreme tiredness, a little depressed and feeling very cold sometimes, even though my heating temperature in my home is fine. I am therefore having a blood test next week to check my levels and I suspect GP will increase my dose.

    Several months ago they checked my Vitamin D levels and found I was deficient, so have been taking vitamin D daily ever since. Many people in the UK can be vitamin D deficient - lack of sunlight, so need to take supplements.

    When you have been hypothyroid for a long time, it can take a while to feel better, but you WILL.

    Take care

    Heather

  • I can only tell you to try to wait, I empathise totaly. I walked 8 dogs at different times a day. Ive ended up taking 175mg of thyroxine just lowered to 150 day, they7 say on an empty tum but Ive never heard about not eating after., Daft! you have to eat to keep your blood sugar up. so many different things we are told, it took 6 months before I felt any better. but they cant give too much thyroxine too quickly.

    Im afraid I have never ever reached the health I had before and Ive been on it for 14yrs. Happy Christmas

  • I was diagnosed 3 years ago and am now on 200mcg levothyroxine. I left my original gp as they had fobbed me off for months giving me excuses for my symptoms. I finally put my foot down and demanded blood work. Turned out I had hardly any natural thyroid function left and was admitted into hospital because of how ill i was.

    My new gp surgery is so much better and depending on what doctor I see they manage the condition well and listen.

    I have realised that it takes time for your body to heal. I've gone from not being able to get out of bed because of how drained i felt to waking up with energy almost every day. I no longer "need" to nap. My hair is now as thick as it was 10 years ago (although very grey) I've nearly lost all the weight I gained when diagnosed (3 1/2st)

    It annoyed me when i felt ill and everyone assumed once I got tablets that would be it, your better. Of course your not. Give it a bit more time. You may even find that different brands of levo work better for you like I did.

    Don't push yourself too much, if your tired sit down or have a nap. When you feel like you have a little energy don't over do it. Keep reminding yourself that it DOES get better. It might not be the same as you were but it's better than you are now.

    Davinia xx

  • look up dr rouziers site. a lady has put a blog here on him , in th e usa, excellant -- telling you exactly what our doctors should be testing for and what they dont test for. an dhow everything works to boot!--- dr chandy is ace on b12----- lack of it affects everything-- doctors endos medical people somehow think that vitamins dont count well- why th ebloody hell do we have them then? its the same as hormones ,for gods sake we run off hormones, would they buy a brand new car and expect it to function if it had a spark plug or bolt missing? next--- the B12 ISSUE-- they will tell you you ar fine if you have a level of 500 or more-- its bullshit- japan is using 500 as its lowest level to treat , same as euro, so why are we told 500 is ok- it is NOT, its barely emough, plus if you have thyroid/adrenal kidney/any autoimmune/ gastric problems then it will more difficult for you to absorb b12 and everyone already has all these probs that are here- its a no brainer, plus it is now known that a small percentage only of b12 is used inthe cells and tisssues, th erest is not worth a carrot-- its calle dt the ACTIVE B12, it is done by st thomas in london at this moment, with a refferal letter as per usual from th e gp if you can manadge to get one. the patient pays so its no big deal to them. lack of b12 causes many many symptoms so check that one out by google of all the symptoms you can have. if you dont have enough intrinsic factor in th egut you wont absorb either, so ther is more to consider than just doc saying-- hey your thyroid blood levels are normal, they may be many reasons why you are not using thyroxine, its a long hard journey of forever searching, but search you must. wishing you well.

  • thanks to all of you..I have printed off these comments and when next visiting doc will be armed and dangerous with all my new information to wave in his face. Your support gives me hope that I can get better, maybe not up to what I was, but hopefully better than the crappy way I feel right now..I have a few days off work now to.... eat and sleep and watch the box and maybe recharge my poor worn out batteries.

    Happy new year to us all and may it be a more healthy one

  • Hello, just a quick message to see how you are feeling. Marie XX

  • Hi,

    feeling more hopeful reading these blogs, but just as crappy. Increased dose made no difference. Is there any alternative/additional medication to Levothyroxine? What is T3.

    What meds does everyone else take? Review with doc on 7 Jan so have 10 days to stick it out. Luckily not back to work until 2nd, so can still rest.

    happy new year...xx

  • Thanks to everyone for continuing to advise us newbies to this fab site. I feel slightly more encouraged that respite is nigh! After three years of decline and 6 stone weight gain I am sick of being told you'll feel better when you lose that weight. Yeah right and just how does 75mcg of levothyroxine help that then? I have zero energy 100% aches and pains and mega thinning hair and short temper. I also cannot kneel down and cannot walk far because my feet and knees ache so much. I agree that you are just lucky if you get a good GP. My last one told me I didn't need to see the endo again as all my symptoms had been dealt with now. Yeah thanks for that. I have now relocated so maybe my new GP will be more switched on. Thank heavens for you guys on this site! I submitted my blood test results on this site but I think the doctors missed checking my thyroid function haha there's a laugh! Good luck in 2013 fellow sufferers.

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