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New and confused 😣

Hello so ny story starts 5 years ago...a lot of weight loss to the point of being so small and then never being able to put weight on. Until last year, my mum noticed I had a unusually large eye, I dismissed it. Then my monthly cycle went haywire and was so heavy and every 2 weeks, aftwr being referred to gyno dept I had what now turns out to be an unessary surgery, weight then started to climb up with no life style changes in last 5 years, looking back now migraines and forgetfulness and being not nice to people around me should have been a clue something was wrong. I was referred to opthamology dept about my unusual eye who listened to my story so far and asked for a TSH level to be checked. I did tell them at the time 5 females on my mother's side had thyroid issues but out of the 3 blood tests in last 10 years I've always been told my levels are normal. Anyway my TSH came back at 964! Apparently they stopped counting at this point. She diagnosed Graves due to my eye issues and weight loss even though that's not the case anymore. After speaking to my GP who is great he noticed my T3 levels had dropped each time I had a blood test but where still in normal range and asked for a blood test now as he was sure due to my abnormally high TSH I would be now underactive. Bloods came back and he was right (I didn't make a note of results) and after picing together last 5 years he confirmed 100% not Graves but definitely Hashimoto's. I'm gutted, it's been a 6 month struggle of confusion, 2st weight gain, migraines etc. Started on 50mg of levothyroxine and as of today I am now starting my 100mg dose. So much more to this whole story I can assure you but I suppose I'm looking on here for advice, help, what should I be asking at appointments and just to speak to those who are going through same thing. Luckily my employer is so supportive over all this!

4 Replies

Read as much as you can about Hashimotos- on here, on Thyroid UK and also several USA websites e.g. The thyroid Pharmacist, Amy Myers and Chris Kresser. Lots of info about vitamin levels and common food intolerances - most usually gluten, you don't need to have any obvious symptoms but can still benefit for going gluten fre

Very many of us with Hashimotos find great reduction in symptoms by changing to strictly gluten free diet and slow decrease of TPO antibodies too

Hashimotos can significantly change lining if the gut - called leaky gut. This can allow molecules to cross from the gut to blood & causes increase in antibodies

Have you got any antibodies blood test results? There are two sorts - TPO Ab and TG Ab. To feel better many of us find it necessary to lower the antibodies by finding out what food intolerances are responsible & sticking to a clean diet

If you have not had tests for vitamin D, B12, folate & ferritin then ask GP if they can be done. It's common with Hashimotos for these to be low & they may need improving with supplements in order for thyroxine to work. Always get the tweet result figures including the ranges (figures in brackets)

It's important to always take Levo on empty stomach and then nothing apart from water for at least an hour. Many take on waking, but a lot of us find taking in evening just before bed can be more convenient & research suggests evening uptake of dose may be more effective

When you go for future thyroid blood tests, recommended that we get test as early in day as possible, fasting and don't take thyroxine in the 24hours before, take it straight after.


Welcome to the forum, Pinklady23.

I have never seen TSH as high as 964! The good news is that level of TSH doesn't correlate with the intensity of symptoms and that people with high TSH at diagnosis often make a faster recovery than those who are diagnosed with relatively low TSH.

If you have Thyroid Eye Disease (TED) you have Graves antibodies in addition to thyroid peroxidase antibodies which cause Hashimoto's. There is no cure for Graves or Hashimoto's. Treatment is for the hyperthyroidism Graves can cause or for the hypothyroidism Hashimoto's causes. Graves can attack other organs in the body, particularly the eyes, and it will help reduce flare ups of TED if your TSH can be kept <0.1. You should also avoid tobacco smoke, either your own or others, as it will exacerbate TED.

Many people have found that 100% gluten-free diet is helpful in reducing Hashimoto's flares, symptoms and eventually Hashimoto's antibodies and perhaps, Graves antibodies too.




For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

It takes 7-10 days for Levothyroxine and dose increases to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.


Make it a habit to get a printout of your results and ranges (the ranges are the figures in brackets after the results) and you can then monitor your progress on each dose and post them on the forum for advice.


Thank you for both your replies, started to read all about it and there is so much to take in! The figures part I am rather useless at but curiously the TSH figure came from hospital test and when I spoke to doctors today about the figures all they gave from some done 2 weeks ago was TSH 23.63 so that's totally different to hospital one and T4 Free of 7.23? I think on my next blood test I'll do exactly that and get a print out as they may make more sense! I did wonder about TED as MRI shows muscles are enlarged and I about having such trouble with one of the eyes. Opthamology are seeing me every 3 months and I'm awaiting my endo appointment date. The hardest part at moment is I am so easily confused and forgetful lol I feel like I've aged about 30 years 😩 the hair loss I hope slows down as I can just about deal with some of it but not loosing my hair as well as carrying around 2st more than normal!


A TSH result of 964 is unlikely to accurately reflect, well, anything.

Very high TSH is quite possibly due to interference by, for example, antibodies to TSH. The tests from some of the manufacturers is unable to exclude the macro-TSH formed when a TSH antibody binds to a TSH molecule. In that case, the result will be high, sometimes very high.

There are other possible causes of interference with tests:

High dose biotin taken within days of a test

Possibly rheumatoid factor.

Human anti-animal antibodies

Anti-ruthenium antibodies

You might find this paper interesting - or boring beyond belief. :-)



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