Anti-thyroid antibodies over 1000. High TSH, low FT4. Started 100mcg Levo. Will I feel better soon?

Posted recently regarding pre-IVF bloods throwing up abnormal thyroid results. GP didn't want to treat at first but did a u-turn (thank goodness) and wrote to me asking me to collect a prescription and have bloods for antibodies asap due to family history of Hashimoto's.

TSH is now 11.5, antibodies over 1000 and FT4 9. I feel horrendous. Completely exhausted. No energy to do anything, even basic housework as well as a comprehensive list of other symptoms. I'm a full time carer to my 8 year old so I'm desperate to feel better.

GP has referred me to an Endocrinologist and with a heavy heart, we've obviously shelved IVF for now. I started taking 100mcg Levothyroxine a few days ago. Repeat bloods in 6 weeks.

Will my antibodies go down with this medication? Are they causing the huge increase in severity of symptoms? I've felt unwell for years but the past few weeks I seem to have nosedived. Feeling down at the thought of having to struggle through my life for more weeks/months/years... My son is suffering for it. And the secondary infertility is soul destroying. Is this Hashimoto's?

9 Replies

  • Your antibodies should reduce but I am a bit concerned that your GP gave you 100mcg straight away. Normally, we get 50mcg of levo with 25mcg increments every six weeks approx until we feel better. If you get palpitations or very hot, I would reduce your medication. I am not medically qualified but my TSH was 100 when diagnosed and didn't get 100mcg immediately. If you cursor down to the post I responded to earlier, you will see the extract re antibodies.

    When you go for your next blood test don't take levo before it, take it afterwards (usually we take it first thing with 1 glass of water and don't eat for around an hour). Always get the test as early as possible as TSH is highest then. Ask for your Vit B12, Vit D, iron, ferritin and folate to be tested as we are usually deficient.

    Always get a copy of your blood test results from now on for your own records (with the ranges as labs differ) and so that you can post if you have a query.

  • Shaws, NICE suggest 75mcg-100mcg as the recommended replacement starting dose for healthy adults under 50 years of age without heart disease. We're used to seeing people's recovery delayed because they're started on too low a dose and not increased quickly enough.

  • O.K. thanks. I was prescribed 25mcg initially and the Professor said I should have been given 50mcg. Thinking back to the awful palps I wouldn't wish them on anyone.

  • Shaws, No, me neither, hideous feeling.

  • A thyroid gland dysfunction can cause infertility and also causes female 'problems' as well as many other symptoms. Hopefully when you get to a dose which makes you feel much better everything will be o.k. and you can get on with life.

  • Pat1ence, it'll take 7/10 days to absorb the Levothyroxine before it will start to work on your symptoms. It takes up to 6 weeks to metabolise and feel the full impact of a dose but I think you will be feeling considerably better in 4-6 weeks compared to how you feel now. Leave 24 hours between your last dose and the blood test to avoid skewing results.

    Take Levothyroxine with a glass of water on am empty stomach one hour before or two hours after food and drink for maximum absorption, 2 hours away from other medication and supplements and 4 hours away from iron, vitamin D, calcium and oestrogen.

    Elevated antibodies mean you are positive for autoimmune thyroid disease (Hashimoto's). Many members recommend a gluten-free diet to reduce Hashi flares and antibodies.

  • Hi I'm the same as you, antibodies were over 1000 (still are high!) and TSH was over 100 (they stopped counting at that figure so never knew how high it went) t4 4.4. My starting dose was 50mcg, the main issue was a big dose to start with can be 'too much' even for a body with so little thyroxine. They increased me to 75mcg 4 weeks after that as my tsh was still 8, now almost 2 years later I'm on 150mcg. I was brought into range with 6 weeks but the increase was done on elimination of symptoms and whenever tsh climbed over 2 (I become very symptomatic at that point now, I do t know how I made it to over 100 without noticing) I still have a few symptoms though dizziness, tiredness, brain fog, mood swings and I'm still fat ha ha. I'd prefer combination treatment but it's like getting blood out of a stone. I'm concerned why your doctor was reluctant to treat you at first when you are so obviously under active? You will notice a decrease of symptoms by week 2 especially being so under active, it is a long journey getting it right though. Good luck x

  • I would definitely try a gluten free diet, it made a big difference to me and my TPO antibody level has gone down to 13 after a year being gluten and lacto free. I found 2 weeks on levo made a noticeable difference to how I felt.

  • Thanks everyone. My fertility consultant and GP wanted me to wait until a follow up blood test to see if it was an anomaly. Apparently a virus could have skewed the results? I knew they were wrong, that's why I begged for a blood test sooner. GP turned me down at first but got in touch a few days later to say she thought I needed medicating after all. Did a blood test for antibodies straight away and called as soon as she got the results to ensure of started the thyroxine and tell me she was referring. Me to an endo. She worried me a little, she sounded very concerned.

    My throat is uncomfortable today. Is this normal? It does this every now and again. Feels swollen inside, like its restricting my windpipe? And swallowing is uncomfortable. My thyroid gland feels upset, does this make any sense?!

    I'm wanting to go gluten free. Tried a few months ago but lost a stone which made me underweight so my FC told me to eat normally. How do I get help to go gluten free safely? Where do I start? It's utterly overwhelming.

    Thanks so much for all your advice. I think my GP has worked out my dosage on my weight which would make it 88mcg. Maybe she rounded it up? Or maybe she realises how desperate I am (I started crying when begging for bloods as I'm a carer and struggling to care) my list of symptoms was very long, 3 pages. Maybe she had a hunch? I've read so much conflicting info on starting doses.

    She also said the Endo might want to see me very soon, should I be worried about this? Or is that normal procedure?

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