New to Hypothyroidism - am I overplaying it? underplaying it?

Finally diagnosed at the start of this week following successive blood tests during 2016 (to determine whether thyroid levels were being affected by work stress), I have been started on 50mcg Levothyroxine and have to return for blood tests in 4 weeks to see whether this is an appropriate level.

I've also had flu and a chest infection (antibiotics until this morning). I wasn't actually feeling bad before the flu, so don't know how I should be feeling now. The diagnosis was on the basis of bloods taken late November but I hadn't bothered to get the results as I was feeling okay, and had been warned that when hypothyroidism did hit, "boy would I know about it".

Now I am drained, doing too much at once brings me out in a hot flush/sweat and dizziness, sometimes I struggle to think clearly but at other times my brain is quite active and 'normal'. I'm being very careful about managing my energy levels and not doing too much, fortunately DH is helping me.

What I want to know is whether this is normal? Does it sound standard for the time immediately following diagnosis? Am I overplaying it, as in I should expect to feel this bad and there are thousands of other people out there who feel this bad on a daily basis and just get on with life? Or am I underplaying it, and should be acknowledging that I have a chronic condition and it's okay to ask for help?

Apologies for the ramble. It's all new to me.

11 Replies

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  • I am sorry to say - It is completely normal. However now you have been begun on a starting dose, i.e. 50mcg with increases of 25mcg every six weeks until you feel you are symptom free (the GP may halt increases if he believes that anywhere in the TSH range is fine - wrong). We have to have a TSH around 1 and some of us lower.

    Blood tests should be the very earliest and fasting (you can drink water) and allow 24 hours gap between your last dose of levo and the test and take afterwards.

    Always get a print-out with the ranges for your own records and post if you have a query.

    Also ask GP to check B12, Vit D, iron, ferritin and folate as we can be deficient, plus thyuroid antibodies

  • Thanks. I didn't get the results mainly because I was so flu-bugged that it was hard to take in anything I was being told! I know it was the level of antibodies last year that started me down the route of regular blood tests.

    Didn't know about the gap between last dose of Levo & testing, thanks for that. I'm taking the Levo last thing at night because there's no way I could function with delayed breakfast in the morning. Blood tests will always be as early as possible to fit around work, so now I know to skip the Levo dose the night before.

  • Bedtime dosing is fine as long as your stomach is empty. If you've had a heavy meal allow about 2.5 to 3 hours before taking levo. If a light meal you can shorten the time. Food can interfere with the uptake.

    Many members find it beneficial. In that case you miss the night dose before the blood test and take it after the test and take it again at bedtime as usual? You wont overdose. :)

  • EggysMum First of all, arrange your next blood test for 6-8 weeks after starting Levo, not 4 weeks. This is because it takes 6 weeks for Levo to fully take effect. Always book the first appointment of the day, fast overnight (water only) and leave off Levo for 24 hours (take after the test). This gives you the highest possible TSH which is what you need when looking for an increase in dose or to avoid a reduction. Any increase should be in 25mcg increments with a re-test 6-8 weeks later and further adjustment of dose if necessary.

    It would be an idea to ask for antibodies to be tested to rule out (or in) autoimmune thyroid disease aka Hashimoto's which is the most common cause of hypothyroidism. There are two types of antibodies - TPO and TG, the NHS tends to only do TPO. You can be negative for TPO bit still have TG antibodies. You can get these tested privately with a fingerprick blood test - if you want details just ask.

    Also, it would be a good idea to test vitamins and minerals as these all need to be optimal (not just in range) for thyroid hormone to work properly. Ask for:

    Vit D

    B12

    Folate

    Ferritin

    Low levels of these can have symptoms similar to Hypothyroidism so it's a good idea to test and address any deficencies.

    Take your levo on an empty stomach, one hour before or two hours after food, away from any supplements or other medication.

    You could be feeling drained at the moment because of your recent infection so you need to recover from that. As you've had a course of antibiotics it's a good idea to get some probiotics to repopulate your fit with good bacteria which the antibiotic s will have killed off as well as the bad bacteria. A general, decent quality, not too expensive probiotic is Biokult Advanced Multi Strain Formula.

    It's good that DH is helping. Don't struggle along, if you feel you need help then ask for it. Once optimally medicated with optimal vitamin and mineral levels, life should hopefully go on as normal. If it turns out you have Hashimoto's then as the antibodies attack then you can experience fluctuations in how you feel stopthethyroidmadness.com/h...

  • SeasideSusie, thank you for sharing. Stopthethyroidmadness site brought a tear to my eye! 27 years I have never been given any compassion from family, friends or colleagues.... with my new diagnosis of sjogrens syndrome and the fact that I have retired (have time to focus more on my needs!), I am researching every day. My intention is not only to get as well as possible, help others, but to shout from the rooftops! Invisible illness such as these are very debilitating, not seen as important by people who don't have them and or are unwilling to learn about or accept they impact on activities of daily living.

    I aim to purchase the book STTM and subscribe to the site. Together we can and will change the perception in society.

  • chances are your

    ferritin

    folate

    b12

    vit d3

    are below halfway in their ranges and this has a major effect on the body and affects the bodies ability to absorb and utilise levothyroxine

  • Chest inf and flu/colds are usual when hypo untreated. It is time to be kind to yourself and rest up. You have probably lived as 'a doer' and pushed any symptoms away. Let hubby do more! Ha! When you are, hopefully, optimum, another story!, you can jump back on the treadmill of life. My best wishes to you,

  • Thanks for the response - that's effectively what I was wondering. I am a 'doer', I'm the organiser for the family, the main contact for our disabled son, and a team leader at work. Is hypothyroidism just something I should "suck up" and try to get on with life as normal, or is it legit to say "I have an issue" and ask for help. I don't know whether I am in denial, downplaying this.

  • You are in denial I'm afraid. There is an issue, definitely ask for help and more importantly, take it. What prompted the blood tests in the first place? If you hadn't been diagnosed when you were you would eventually have hit a brick wall. I hope your diagnosis came early, the earlier the better so meds can be effective and before the chronic symptoms knock on to other ill effects.

  • What prompted the blood tests? Ah, interesting story ... Last spring, I was off work with stress. GP wanted blood tests to check my cholesterol etc. I asked if they could test for thyroid function too, as my Mum is hypothyroidic, my brother has Myasthenia Gravis, my niece had just been diagnosed with Hashimotos. Sure, no problem ...

    I don't know exactly what figures came back, GP said that my brain was sending increased messages to my thyroid to make it work. He also said it could be linked to the stress, so wanted to monitor for a while rather than treat immediately. Blood tests 2 months later showed I was back to normal thyroid function, but with raised antibodies (?) so likely to develop hypothyroidism in the future.

    Blood tests were scheduled for 6 months later, I was feeling okay so didn't rush them but eventually had blood taken end of November. Kept meaning to phone during December for results but honestly thought the GP would phone me if he was worried by the results! Then went to GP for flu/chest infection, only to be given news that my thyroid function was very diminished and he recommended starting on Levo immediately.

    But back in November I hadn't hit a brick wall. If anything, I was doing very well, my Christmas was incredibly organised, I was fighting SS to try and get help for my son, I was firing on all cylinders! It's only since this flu/chest infection that I've hit the wall ... and I don't know if the wall is the HT or the remnants of the flu.

    Apologies for ramble ...

  • You would have hit the wall some time in the future, too soon to hit it now without meds. You done well to ask for bloods when thyroid probs are in the family. On that basis he could not have refused. You sound like you need convincing to rest up! Tick off this list thyroiduk.org.uk/tuk/about_... and see how many symptoms you are aware of.

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