25 mcg hasn't had much of an impact at all

Hi all you good people! I was diagnosed borderline hypothyroid a few months ago. My TSH was 6.5 and T4 11.3 in October 2016. I was started on 25mcg levo. I had another blood test a week ago and the results were TSH 6.5 and T4 11.8. My doctor sent me a new prescription in the post for 50mcg with a review date set for July. I have been given no printouts or ranges (in spite of asking). Alongside these blood tests I have had a couple of private Blue Horizon tests which are slightly different. The one I did last week (within a day or two of the doctors BT and both after fasting and 24 hours after my last Levo dose) showed a TSH of 5.1 (0.27 - 4.2) T4 12.88 (12-22) and T3 4.4 (3.1- 6.8). ATPabs 13.1 <34; ATGb abs 123 <115. I am going to start the 50mcg tomorrow. Shouldn't I be reviewed before 6 months? I thought the idea was to,repeat blood tests every 6-8 weeks. I'm feeling generally quite well - just a bit breathless from time to time (and moderately brain dead!). All vitamin tests are optimal and I'm on a gluten free diet. i don't want to bother my GP unnecessarily,. But equally I want to get my dose sorted as soon as poss. Any advice gratefully received.

10 Replies

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  • Bagster,

    Your thyroid levels should be retested 6-8 weeks after any dose adjustment. 50mcg might be sufficient but if it isn't there's no point in waiting any longer than necessary for dose to be increased again.

    cks.nice.org.uk/hypothyroid...

    If your requests for the practices results and ranges are ignored write to the practice manager and make a formal subject access request for the results and ranges which patients are entitled to under the Data Protection Act.

    ico.org.uk/for_the_public/t...

    TSH is too high and FT4 too low which is why your dose has been increased. Thyroid peroxidase antibodies are negative but thyroglobulin antibodies are positive for autoimmune thyroiditis (Hashimoto's) which causes 90% of hypothyroidism. Raising dose will reduce TSH which may help reduce antibodies although Levothyroxine doesn't treat Hashimoto's which has no cure. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

  • Many thanks Clutter. I had a very frustrating phone call re ranges with a receptionist who wasn't very clued up, I'll make a formal request as you suggest and try and get a blood test in March rather than July. All the best

  • Bagster,

    If the ranges aren't included on the results receptionist won't understand what you are asking and you might have to ask the practice manager or GP what the ranges are.

  • Will do. Many thanks for your help.

  • If they query why you want an earlier test tell them you are feeling worse and have been told you can get another test 6 weeks after the first as at 6 weeks the complete dose will be in your body ( it gradually builds up during that period).

  • Thanks. I'll do that. I'm slightly puzzled by their complete lack of interest. No contact - just a prescription in the post with a review date 6 months hence. So thankful for this forum!

  • That's so wrong but then they think one pill cures all. Well would do it it was lethal but doesn't help the cause! This is the. Est thyroid forum I have come across and I've learn so much as well. Think it helps that there are so many members do more likely to get replies.

    So glad you have found us! Have a look at the main Thyroid Uk site as lots of information to digest and help you on your way but if ever confused or don't understand shout out. Nothing is ever too trivial and so we are happy to help. We have all been there!

  • Bagster, I would suggest you also have Vit B12 and VIt d, ferritin, folate and iron levels tested as these are often low in us thyroidies. I speak from personal experience. Make sure you get the ranges too. If they won't play ball at Gp you can pay for a private test through Blue Horizon. If you are a member of Thyroid Uk you get the test a bit cheaper and TUK gets a donation. I have used them at least twice a year for the last 4 years since being diagnosed with antibodies. The tests have been a great help in keeping me properly medicated and getting back to something like normal. Your GP sounds like usual run of the mill. Take the pill and don't ask questions they can't answer!

    I found going gluten free made a really big difference to my health. Fot me going lacto free also helped. Like most of us on here you have to educate yourself about your disease. good luck

  • Thanks Crimple. I did a BH blood test (with the utmost difficulty - def not a bleeder!) and have since supplemented with B12 and D3/K2. Insomnia dramatically improved. Also been gluten free for a while and recently much, much stricter. I don't know if you have seen the recent series The Thyroid Secret by Isabella Wentz posted online. They were free for a short while and the current episode (free today) is about the gut. Really informative. Happy to post the link if you like.

    Bags

  • Thanks bagster I know about the series, too busy to watch but have Isabella Wentz book which has been invaluable in understanding my issues. I had a number of food intolerances diagnosed before becoming hypo so have learnt a lot about leaky gut etc. It is hard to be strictly gluten free but because of my other issues I tend to cook from scratch, then I know what is in the food. M&S have lots of things which are gluten free, some they don't advertise as such. Most of their sausages and burgers are GF, they use rice flour or potato flour instead of breadcrumb.

    I do now use Arla lactofree milk, butter, cheese and cream and occasionally have some milk chocolate without problems! I happen to like continental plain choc and M&S do a bar with hazelnuts which is scrummy!

    Glad your insomnia has improved, mine is bad when my B12 is too low or I am kept awake with painful joints when Vit D is getting low.

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