Thyroid UK
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TSH going up and down

My TSH keeps going up and down despite no change in dose?

TSH in Nov 2016 was 3.8 then in Jan 2017 was 1.67 and in May 2017 0.05 TSH range 0.2 - 4.2

Taking 175mcg thyroxine and feeling awful since diagnosis in 2011. Thank you

12 Replies
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Have you had a test for autoimmune thyroid disease or been told you have Hashimoto's thyroid condition?

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Thanks for reply no I haven't, do I need to ask for anything specific?

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Could you ask your GP to test for autoimmune thyroid antibodies? There is information on the Thyroid UK website about Hashimoto's and which blood tests are needed or you could do a new post to ask. If you have antibodies it might explain the changes in TSH.

You could ask your GP to test vitamin levels at the same time. Vitamin D, Folate, Ferritin, Vitamin B12 and iron since many people with thyroid conditions are deficient and if you're going to get some bloods done you may as well check them all.

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Thanks I have results of vitamins and minerals which aren't good despite supplementing.

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If you post your vitamin results here then people will make good suggestions. You may not be supplementing high enough doses or you may have an absorption problem. Has your GP given you supplements?

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Yes he has but levels are just dropping and I don't know why, they were done last month

Ferritin 22 (30 - 400) taking iron

Folate 4.1 (4.6 - 18.7) taking folic acid

Vitamin B12 207 (180 - 900) dropped from 445 (180 - 900) a month before, never supplemented

Vitamin D total 25.6 (25 - 50) taking vitamin D

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Have ordered TPO and TG antibody blood test from Blue Horizon since GP is doing repeat bloods for thyroid at some point anyway, I didn't know about thyroid antibodies so these are being done seperately

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If it turns out you have thyroid antibodies then consider going gluten free as it can help I believe. You can read other people's post with experience of Hashimotos. Then you should also find out about pernicious anaemia and you can find out more from Healthunlocked Pernicious Anaemia forum or Pernicious Anaemia Society UK website. You could get your GP to test for instrinsic factor antibodies too.

Also consider Celiac disease as a possiblity for lack of absorption.

Could you return to your GP and ask why he/she thinks your vitamin levels are not increasing and ask what tests they plan to do. In the meantime, ask if you should increase the supplements you are taking while finding out the cause.

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Hi yes I can return to GP, I think he thinks I have coeliac anyway because I gained weight on gluten free food and lost weight on food that had gluten in it

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Good, return and make a double appointment to discuss all the possible reasons for lack of absorption and get ALL the relevant tests done. Your GP could include a full blood panel too just to check everything out and provide a baseline. Then make sure you book a return apt to discuss all results and take it from there. In the meantime I hope you get your thyroid antibodies tests through quickly and can find out more.

Just checking, you probably already know, but are you taking thyroid meds on an empty stomach with plenty of water and not eating anything for an hour afterwards? You should also be leaving 4 hours between thyroid meds and supplements and I've read you should leave 6 hours until taking magnesium.

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Yes

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By the way, you really should check that you are not B12 deficient if you are supplementing folate as you can have a deficiency and still be anywhere in NHS range if you read the pernicious anaemia society website. Even NHS choices website explains that the B12 test is not conclusive so other tests are needed.

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