Help - hypo to hyper and reduced dosageof Levo

I finally began treatment for a 'borderline' hypo (TSG 6.7, T4 16.2 & 207 Antibodies) in Dec 16, as thankfully my Endo diagnosed on symptoms and not just test results. Fast forward 3 months on 100mg Levo and my bloods had dropped to TSH <0.01 with T4 of 32.8. No Antibodies tested this time. Based on this the Endo reduced my medication to 75mg and now after 4 weeks on this, I feel absolutely done for - the past few days I can't shake fatigue, tiredness and severe brain fog.

During my review appointment, prior to reducing to 75mg, I described how some of my symptoms had improved but that I still didn't feel great, the Endo was thinking that he would increase the dosage to 125mg. However when he seen the bloods, he reduced by 25mg as he said I had swung to hyper - despite having now actual symptoms.

I have another 3 weeks until my next review but I'm struggling to see how I can last until then with this brain fog.

Does anyone have any advice?

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6 Replies

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  • Weecfenno,

    The highest FT4 range I've seen in the UK goes up to 24 so you were very over medicated to have FT4 32.8. It is possible that you had an autoimmune flare which can dump hormone into the blood stream causing transient hyperthyroidism as damaged thyroid cells die off. If your thyroid levels have dropped since the flare stopped and your dose was reduced your blood test will reflect this and your dose can be adjusted again if necessary.

    Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. 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_...

    It is unlikely your thyroid peroxidase antibodies will be retested. They were checked to confirm or exclude Hashimoto's and after that it is expected that antibody levels will fluctuate in varying degrees.

    Thyroid patients are often low or deficient in vitamins and minerals. It is worth asking your GP or endo to check ferritin, vitamin D, B12 and folate as symptoms are not unlike hypothyroid symptoms and may be why patients on adequate thyroid replacement continue to feel unwell.

  • Hi Clutter, thanks so much for the reply!

    I believe my Endo ran a full 'vit and min panel' at my first appointment with him and he had told me everything looked fine as I raised the issue of a possible B12 deficiency. I might ask again at my next appointment though.

    Can I ask, and apologies if this is a stupid question, if the presence of antibodies means that I do have Hashimoto's? And would the 'hormone dump' or flare up be associated with with this?

    I feel like such a newbie to this whole thing and after a fight to even be referred to the Endo, I just want to make sure I go in to my next appointment with plenty of questions and a better understanding of what's going on.

    Thanks again :)

  • Weecfenno,

    The presence of high antibodies confirms autoimmune thyroiditis (Hashimoto's). In the early days of having Hashimoto's as lymphocytes infiltrate the thyroid gland it destroys cells which dump hormone into the blood stream as they die off. After a while the cell loss means the thyroid atrophies or shrinks and hypothyroidism increases so dose will need raising.

    I would ask for the results and ranges of the vit/min panel. "Fine" in most doctor terms means results are within range but it doesn't necessarily mean they are optimal.

  • Thanks so much Clutter - I will most definitely be asking for the results of the panel and be raising the issue of Hashimoto's with the Endo.

  • The number of thyroid-destroying antibodies you have will fluctuate. Their activity level will fluctuate too. One way to improve how you feel and to maximise the life of your thyroid is to reduce the numbers of antibodies you have.

    People have found that selenium helps to reduce antibody numbers.

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    Also, dietary changes help. Unfortunately, nobody can say which dietary changes will help without trying it out for themselves. If a dietary change makes no difference then you should go back to eating that particular food again. There is no point eliminating things from your diet that you don't have to. The usual things that people try - one at a time so that they know what is helping and what isn't - are :

    1) Going gluten-free - it has to be done religiously. There is no point in going almost gluten-free.

    2) Going dairy-free - this requires people to avoid anything made with or containing any form of animal milk. The offending substances, I think, are lactose and casein. People who are dairy-free can eat eggs.

    3) Cutting out nightshades - there are loads of lists of nightshades around the web.

    4) Going on a low-histamine diet - lots of info about this round the web too.

    I think 3 and 4 are rarely required, and few people actually try it. Personally, I've only given up gluten. I haven't attempted to give up dairy.

  • Wow I never realized so much of diet could influence thyroid activity - I will definitely be looking into this more as I eat a lot of the vegetables which include Nightshades and a lot of dairy based products! Thank you so much for pointing me in the right direction!

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