Feeling worse since starting 100mcg levothyroxine

Hi,

I'm new to trying to manage my thyroid levels and it does not appear to be going well for me. I am one to always follow (doctors) instructions but feel my GP is not hearing me and giving blanket advice rather than advice based on me/ my situation. I don't want to ignore professional advice but am also losing faith in my Dr.

I am 33yo and have struggled with weight for the last few years (gaining/ struggling to maintain despite regular exercise and attention to nutrition). During Dec/Jan holidays I was very flat but put this down to recovering from a tough year. Early Jan my thyroid levels were tested as part of pre-pregnancy planning. My levels came back hyper- (refered to endo in 1 month) and throughout Jan symptoms continued to worsen, retested T3 & T4 further elevated. Ultrasound showed some nodules, FNA on one with micro calcification came back clear for cancer. During Feb I felt noticeably better and asked to be retested - levels in normal range. By the time I seen the endo I was feeling things change again and further blood tests came back hypo-. I was then prescribed 100mcg levothyroxine - taking first thing each morning 30/60 min prior to food.

Since starting the medication I have been exhausted during the day, mentally foggy, lacked concentration and struggled getting to sleep at night (despite being tired). The disruption to my sleep (getting to and waking up later) has further disrupted my other daily routines (include eating) and the lack of sleep (and other symptoms) is making difficult to function normally at work and life in general. My most recent thyroid tests (TSH/T3/T4) are all in the normal range.

As I was feeling much worse after starting thyroxine I requested my adrenals be tested. Completed a short Synacthen test and tested 'normal' - but I was taking oral contraceptives at the time (However have since read it is recommended these stop 6 weeks before the test). My Dr says this wouldn't matter- does anyone know how bigger impact they can have on the result?

My Dr has also said that the fatigue and trouble sleeping have nothing to do with my thyroid/ medication and because of the short synacthen test results I am not physically fatigued.

She has said my main focus should be on loosing weight by stopping excerise (l have already reduced the intensity of my training but tried to keep some regularity - light Bootcamp 3 times per week, PT once a week and boxing once a week) and eating less (she has suggested skipping meals). I am worried about doing this and am far more concerned about being able to function correctly than loosing a couple of kg (At 167cm and approx 80kg I know my BMI is in the overweight range but I am generally fit. I am carrying extra weight but am also fairly muscular). I know the advantages of being a healthy weight but feel that I might keep struggling with this until I get my thyroid/metabolism right as I eat healthy anyway - Dr's advice eat healthy but less of it, she has made this recommendation without asking/considering my daily calorie intake/deficit.

Do these recommendations sound normal?

I had enquired about trying my medication at night instead of AM - my Dr wasn't keen on this but then said she didn't care if I took it AM or PM. She also suggested that I halve my dose. I am not keen to change too many things at once so am considering keeping the same dose and changing the timing first and if that doesn't help then changing the dose.

Any advice?

15 Replies

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  • No, not normal to ask you to skip meals ffs, I am outraged on your behalf. Tell her that sounds great, let's do it together. :-) I would leave weight loss for last and figure out how to feel better in the meantime.

    Also not normal to prescribe you 100mcg levo as your starting dose and then later to ask you to reduce it *by half* which just seems like a lot of unnecessary yoyoing.

    Do you have a copy of your most recent results? Might be good to post here.

  • I have left on the verge of tears after my last two visits to the Dr.

    I think she has a bias towards intermittent fasting. I really want to focus on feeling better (rather than accepting that it's all in my head) before I get caught up on my weight. I know it's part of the picture but feel like it isn't the important part at the minute.

    Most recent results:

    TSH = 2.5 (0.5-4.00)

    T3 = 4 (3.2-5.4)

    T4 = 18 (10-25)

  • SleepyB,

    If those results were taken 6 weeks after taking 100mcg Levothyroxine you are under medicated. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    Most professional rugby players have BMI over range. Just goes to show how rubbish BMI is for assessing weight and fitness.

  • Thank you for your reply.

    I have done some further reading and will be aiming to get my TSH lower rather than accepting that middle of the range in 'normal'.

  • 1) She sounds like an ******** and you may just want to find a different doctor if that means you don't have to listen to abuse about your weight every time you go in to discuss your thyroid. I love it when they find a special interest like intermittent fasting. Where is the evidence that it is a good thing?

    2) You are not on enough meds so sure as **** she is asking you to halve your meds not because she thinks it will help but because it is just something to try because you're never happy, what harm can it do. There certainly is *no* scientific reason why someone who is undermedicated should reduce their meds by half.

    3) Apologies for not being very even-handed, I am outraged for you. My surgery isn't bad (they have actually bent over backward for me to be fair) and I still get anxious every time I have to contact them because they aren't always nice and there is so much red tape, not because I am having a personal confrontation about my weight every time I go in. I would not cope well w what you are going through w your surgery.

  • Thank you for your comment. I have been considering (and think have now decided) finding a different doctor.

    I haven't had surgery but am just trying to get my levels right (or right for me).

    It's so discouraging being told there is nothing physically wrong and the trouble getting to sleep/ fatigue are basically in my head or due to stress/ depression (neither of which are an issue but I feel like they will become if I have to keep going on how I am).

    I'm glad everything is going well for you- I'm starting to learn that getting this right can be challenging in some situations.

  • Troubled sleep - getting to sleep and staying asleep - was a hypo symptom for me.

  • Hi - I would say you are definitely hypo and your GP has the normal level of knowledge of thyroid in next to none. 100mcg is too high a starting dose, it should be 50. That high a dose will be stressing your system and causing the issues you are experiencing. I would drop down to 50 for 6 weeks then test again and be prepared to up it in 25 mcg increments until you feel well and ft3 is close to top of range.

    There is absolutely no problem taking it at night instead, I do, and some people find it much better. Just be sure that it is at least 2hrs after food or 3 if a heavy or fatty meal.

    How are your nutrients? It is important that vit d, vit b12, folate and ferritin are all relatively high not just in range, otherwise you won't make effective use of thyroxine.

    Gillian xx

  • Thank you for the info.

    I might try the switch to evening first (as maybe my body might be getting over the initial stress of the highish starting dose?.....) as it sounds like I might still need a high dose to get my levels right.

    I will keep an eye on my T3 and also ask for the nutrient tests next time.

    Thank you.

  • That really does sound like too much exercise to me. You'll be using up all your T3 on that, leaving nothing for anything else. You don't have much to begin with, and you will have difficultly replacing it without a fully functioning thyroid. You are just reliant on your conversion of the T4 you're taking, to T3. And, your conversion doesn't look brilliant. I would say, just gentle walking, swimming or yoga, until your FT3 is optimised.

    As a general rule, never, ever take advice on nutrition from a doctor. They know nothing about it, but think they do. You need a good level of calorie intake - not skipping meals - in order to be able to convert T4 to T3. Cutting your calories will have a negative effect on conversion, and make you more hypo. But, they just don't understand that!

  • Thank you for the info about T3 conversion and the relationship between T3 and excercise- I will definitely do some extra reading in that area to get a better understanding.

    I had worried about that with calorie reduction...

  • I would have your anti-bodies tested - Anti-TPO & Tg. Both need testing to rule out Hashimotos. Also have you had the following tested - FERRITIN - FOLATE - B12 - VITD - all need to be optimal for you to feel well and for your thyroid hormones to work well - both the ones you produce and the Levo you take :-)

  • I have had the test for Hashimotos but still waiting for result. I had asked for it early on but my Dr said it wouldn't be that because I was hyper- (at the time) so it was probably Graves (test negative) but not Hashimotos. When I asked for it again she said it definitely wasn't Hashimotos, said she had tested for it (that didn't sound right to me). When I pushed to see the results she 'realised' she hadn't tested it.

    The sonographer during the FNA commented how the texture of my thyroid was abnormal - I think this can be consistent with Hashimotos. But I will have to wait and see- I found it very strange that the result for that test hadn't come back but all the others had a week ago.

  • When we suffer with Hashimotos - as you possibly know - we can swing from Hyper to Hypo. Silly woman - she needs to spend a day on this forum and learn a thing or two :-)

    Have you had the other tests I mentioned above ?

  • I think maybe some of them with my initial round of tests but I have not seen the results - I will have to follow up.

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