Recently diagnosed with underactive thyroid, doc put me on 50mg levo, gave me some printed sheets of net and told to come back in 8 wks

I went to doc because i thought i had ear infection only to be told it's my thyroid, but iv had no response from any questions i asked doc just given info of net! I constantly swing from about 3 or 4 days when i have no energy and sleep constantly to 4 or 5 days of pure insomnia where i can only manage about 1 hr solid sleep, i have never had prob with my weight (size 8) but even though i eat LOTS my body burns it of very quick and my body seems to crash within minutes, im feeling very low at mo with no logical reason for this! Along with sore ears, sore throats, blocked nose, sore neck are these all symptoms? Will they get better? Im desperate for someone to talk to as I'm getting no help from doc at all

32 Replies

  • Welcome to our forum,

    I am sorry you are not feeling well. It will take a little while as the GP has to raise your medication gradually until he prescribes enough which makes you feel better.

    From now on get a print-out of your blood test results, with the ranges, for your own records and so that you can post on here for advice.

    Eight weeks is too long for your next blood test so I would make one for 6 weeks and have it as early as possible (your TSH is highest then) and do NOT take your medication until after the blood test. Also ask for a Vitamin B12, Vit D, iron, ferritin and folate to be tested as we are usually deficient.

    You take levothyroxine first thing with one full glass of water and don't eat anything for about 1 hour. If, for some reason, you have forgotten you must take it on an empty stomach so therefore let 2 hours elapse either side of taking levo. If you supplement or take other medications, you have to leave 4 hours from levo.

    Vitamins are important too - you can google foods which contain them.

  • Shaws, thank you for your reply and thanks for welcome, doc told me to take levo in morning half hour before food mentioned nothing about glass of water. Not taking vitamins yet but defo going to start. No food 2 hrs before or after levo is going to be a prob as i eat constantly, if i dont im starving, lifeless and seem to be in a world of my own, very vactant, is this normal? Final i have people who can answer my questions thank you so much.

  • If you take levo as soon as you get up. By the time you wash and dress its more or less time for breakfast. Some only leave half hour but calcium is supposed to interfere with the uptake of levo. Why your stomach should be empty is that some foods can interfere and we don't want that.

    There is also another alternative, you can take your medication at bedtime, last having eaten 2 hours before. In that case, you miss this dose when having a blood test next morning and take it after blood test. You can still take your dose that night.

  • I keep levo nxt to my bed so take it soon as i wake, but have been reading about taking it at night, might try that thank you shaws.

  • How interesting is this adivce! I've been taking Oroxine (50mcg) last thing before going to bed for years now and no one has advised me not to take it the night before a blood test. Can you explain this as I think it makes a lot of sense but not sure. Thanks, love this website, Ozthyroid

  • "There is also another alternative, you can take your medication at bedtime, last having eaten 2 hours before. In that case, you miss this dose when having a blood test next morning and take it after blood test. You can still take your dose that night."

    This is the very interesting advice that I was asking for clarification on. Thanks Ozthyroid

  • It appears that you should leave at least 12 hours after taking meds, before a blood test. I leave around 24 hours i.e. take it around 7 a.m. and take after blood test next day. I did make the mistake and took meds before and knew it would be skewed and told the GP as soon as I went into the surgery otherwise he would have reduced my medication.

  • hey thanks for that info. very very interesting about the timing of taking meds before a blood test. No doctors have EVER advised me about this, nor asked when I last took oroxine before the blood test. It might explain my TSH level which is usually around 3.2 when taken at about 9.30am in the morning. In future i need to (i) omit my evening dose (I only take 50 mcg daily) and (ii) have my blood test later in the day. In such a case, would it matter that my last dose was taken at bedtime 11pm the night before the night before the test? that is, well over 36 hours. Does this matter? ozthyroid

  • If you take a night time dose, you miss this dose and have your blood test as early as possible and take your dose after your blood test.

    Some take their usual dose at bedtime as well as the one in the morning. If you took a bedtime dose after you've taken the one in the morning it would give you a gap of around 12 hours between the after blood test and bedtime. If you were anxious about that you could always take 1/2 dose then continue with your usual dose next night.

  • I have only recently been diagnosed too. Dr thought I had IBS and middle age symptoms, even thought my symptoms are ALL on the hypothyroidism symptom list! ...then the bloods came back. I too am on Levo 50.

    I have two morning alarms one an hour before I get up to take my medication and the second my real get up time. It doesn't really affect my sleep because I don't sleep very well :-/

  • EskrimaDiva, thank you for reply, its lovely to talk to people who understand. How long have you been on levo?

  • Make sure you have a blood test in around 6 weeks with an increase in meds. Always get copies of blood tests with the ranges.

  • Always get copies of your blood test results, with the ranges,for your own records and post if you have a query.

  • Thanks Shaws. My daughter, who was diagnosed 5 years ago (@15yrs) is really not doing very well on her current dose of 50 levo. She goes to bed tired. Wakes up tired and lives in fleece onsie (in the house!) because she's so cold all the time. Dr says her last test levels were 'normal', so is doing repeat tests and others on Monday 28th. Concerned that nothing is gping to happen again. Not a good quality of life for a 21 year old :-(

  • She shouldn't take her medication until after her blood tests. It does sound as if she is hypo. If she can have the appointment as early as possible would be beneficial as TSH is highest then. Get a copy of her blood test results a.s.a.p. afterwards and post them with the ranges on a new question for comments. Normal for the GP is not normal for us, especially if we are suffering from clinical symptoms which should be eradicated if on optimum meds. Also ask him to check B12, Vit D, iron, ferritin and folate as we are usually deficient.

  • sounds much more like you have both graves and hashimotos or are swinging wildly between the hyper and hypo phases of hashimotos

    the pills are not an instant fix it takes time

    Get a copy of your blood tests ( i assume the GP did some ) and vpost them here because something does not sound quite right

  • reallyfedup123, thank you for reply, yeh doc did blood tests im gonna get copy of tests, i was very surprised at my results being under active rather than over, apart from days when I'm exhausted 3 or 4, the other days i cant sit down, constantly on the go!

  • Sorry to that you are having all these issues and I can totally relate. I have hypothyroidism but most all the symptoms are hypo. Ever since I started the Levo 50mcg, I can't sleep at all. I've always had insomnia but I lay for hours only to wake up an hour later. I was sleeping in the afternoon and at night to try to get enough sleep but now I get maybe 4hrs a day combined. My heart feels like it's pounding out of my chest and I'm starving but as soon as I eat, I don't want it anymore. I have Bipolar disorder so I am on Lithium.... which causes hypothyroidism/hyperthyroidism. They want to wait a month to see how the two interact. I feel horrible all the time. I never used to sweat and now I go back and forth between freezing to death and 'hot flashes'. I'm seeing three doctors right now and no one seems to be listening, the one for my Bipolar disorder put me on 2mg of Ativan for sleep, racing heart and my hands shaking so nice I can't write or barely type. Wants me to try Ambian, which I have done before and that's like taking candy to me. I don't understand any of it if they're not willing to listen to you. They're not the ones who can't sleep and he won't even call me back!! (Two days now)...

  • Can totally relate to docs 'not listening'!! I to try and make up my sleep, gosh what i would give to have a normal routine!! I hope they get in touch with you soon alwitt74 and get things sorted, please let us know how things are progressing for you

  • Thank you! I have a job that I have to get up at 4am just to have an hour extra because I can't get tired. At least my doctor in CA would call me back even if she was out of the country!!

  • Did you know there is a petition in the Scottish Parliament re the diagnosis and treatment of thyroid gland problems?

  • Alwitt I was the same with no sleep, someone told me to take my levo of an evening. Taking 50 made me jittery, however I cut my tablet in half and take half before bed and half in the morning. Sleeping so much better now x

  • How long have you been on 50mcg of levo? If it is recently no doubt they should increase when you have a blood test.

    If you go to the date November 20, 2002 on this link you will see the reason we shouldn't really be on a low dose (unless we are very frail and have heart problems). Although the question is different, the action of a low dose is explained.

  • Just for your info about a low dose but I myself was worse on levo than before diagnosis but am fine now having changed meds. I had severe palps on levo as well as widespread pain. Our medication should be gradually increased.

    If you go to the date November 20, 2002 on this link you will see the reason we shouldn't really be on a low dose (unless we are very frail and have heart problems). Although the question is different, the action of a low dose is explained.

  • You will feel well again. If I tell you that a lot of GPs misdiagnose thyroid problems as depression, some times treating people for many years for depression because the symptoms can look very much the same. That is why you feel as you do, but you will recover. The Levothyroxine will replace your own hormones and your body will recover. It may take time depending on how long your cells have been deprived of hormones, so it's not overnight.

    Shaws has given you good advice.

    Do come back for a chat anytime.

  • Thanks meme, I'm the type of person who just 'gets on' with things so this is an 'inconvenience' for me, I'm very hard on myself and very impatient lol, but I'm so glad iv found everyone on here to chat to, not feeling so isolated now : )

  • Surprised your doctor did not pat you on the head and say there there! I wonder if some of them actually have a medical degree. Sighs.

    Moving took 8 weeks for my levo to fully 'kick in' so stick with it as it's a rough ride. Welcome to the club x

  • Thank you Redwinegirl : )

  • Unfortunately this is typical of doctors they do not know anything about it so they won't even try to give you information. I went to an endo who said that I should go to the BTA website for information and no other. I also had a GP who said 'Sometimes its better not to know' both of which I, thankfully, ignored them as I thought both as stupid as the day is long!!

  • Thanks Glynisrose, very wet behind ears when it comes to this, made new doc apps and gonna try and swot up us much as poss before I go back to fight my case lol.

  • I wanted to add that you mustn't feel duty bound to lock horns with your gp unless you absolutely need something from them you feel is worth fighting for. My approach is to leave them out of it unless I need their input. Sometimes you're better off keeping the gp sweet for as long as possible. :-)

  • Your total right puncturedbicycle, i do need to keep my doc sweet, he was brill in diagnosis because i had no idea and he actually is ok lol : )

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