Advice please

Hi I am new and feeling very unwell with swollen lymph glands, tight feeling in neck, upset stomach, salty taste in mouth, breathlessness, bone pain, tinnitus, flashing spots in front of eyes, dizziness, memory loss, feeling cold, headaches. I am currently under medicated on 100mcg levo. Diagnosed 2011. Thanks for reading

TSH 10.3 (0.27 - 4.20)

Free T4 13.2 (12 - 22)

Free T3 2.6 (3.1 - 6.8)

20 Replies

  • Why are you so undermedicated?

  • I am still waiting on endo to get back to me about results

  • Why are you waiting for the Endo? Your GP can prescribe levothyroxine. Have you got other complications?

    You need your vitamin levels testing. Tinnitis is one of the symptoms of B12 deficiency. Bone pain can be D deficiency and your other symptoms could be iron deficiency. Get your GP to check B12, folate, ferritin and vitamin D. It's likely all are low due to your hypothyroidism.

  • Thanks no other complications

  • See my response further down after viewing your new post with vitamin levels.

  • Maybe try NDT which has t3 in it as it seems some people don't do well on levo

  • Jumping the gun a bit, there, Hypo88. The OP should at least bring her TSH down to under ten before giving up on levo. Not surprising he doesn't feel well with those results. :)

  • Hi Jade1, welcome to the forum.

    How long have you been on 100 mcg levo? Your TSH is still very high, and your FT3 is well under-range. What does your doctor say about these results? Doesn't s/he realise you need an increase in dose?

    That said, some of your symptoms could be down to nutritional deficiencies, which most hypos have. Ask your doctor to test your vit D, vit B12, folate and ferritin. And post the results on here.

    Were you told how to take your levo? On an empty stomach at least one hour before eating, etc.? :)

  • 100mcg since august 2017, still waiting to hear back from endo about results. I have ferritin etc already tested. I take levo on empty stomach an hour before eating etc

  • It would have been kind of him to get back to you straight away, with those results! You must feel dreadful.

    Would you like to post your ferritin etc. results on here, and let's have a look? Doctors don't know much about nutrients. :)

  • Done thanks

  • You poor thing small wonder you feel so poorly you are overtly hypothyroid. You need that TSH under1 to feel well and the other two in the top third of range ask for an immediate increase in dose of levothyroxine from your GP or better still see someone else who might have a decent knowledge of how to treat the condition

  • Is there a reason why you're undermedicated? Did a GP or endocrinologist alter your dosage after a round of blood test results that they didn't like?

    Are these NHS tests or private ones, and how recent are they and for how long had you been taking 100mcg of levo. before this test? Have you discussed them with your GP?

    Do you have any vitamin or mineral level test results (with their reference ranges) to share with us, please?

  • Still waiting to hear back from endo about results. GP altered dosage from 200mcg to 100mcg before these results and only had below range TSH. Have been taking levo 100mcg since August 2017. Not taken levo before test. Will post vitamin and mineral results now

  • Oh FFS

    Yet another idiot endo messing about with you dose, just seen your vitamin results too, which are absolutely dire BECAUSE of dose reduction

    Make an immediate appointment with GP on Monday morning to sort out dose increase in 25mcg steps, waiting 6 weeks and retesting before further increase

    and to get supplements organised urgently

    Do you have Hashimoto's? High antibodies?

  • Sorry no I don't know what Hashimotos is

  • Hashimoto's is also called autoimmune thyroid disease

    Have you ever had a blood test result for thyroid antibodies

    It would say

    TPO antibodies


    Or sometimes also

    TG antibodies


    Has you dose changed a lot - with lots of blood tests

    Read about Hashimoto's on Thyroid Uk

    90% of hypothyroidism is due to Hashimoto's so it's likely

  • Dose has changed about a bit, TPO antibodies >1300 (<34)

    TG antibodies 357.3 (<115)

  • So you very definitely have Hashimoto's

    Changing to a strictly gluten free diet may help reduce symptoms.

    At least 80% with Hashimoto's are gluten intolerant and it can reduce the wild swings

    Getting Levo dose back up and improving you dire vitamin levels essential too

    Low stomach acid can be an issue

    Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

    Other things to help heal gut lining

    Bone broth

  • Just read through the thread and your new post with vitamin deficiencies. You are most certainly in need of supplements. As others have said, make an appointment on Monday to get an increased dose of levo and vitamin supplements and point out that your decreased dose has made you vitamin deficient. Make sure the GP tests both FT3 and FT4 next time and point out that it's only the FT3 that truely indicates how well replaced you are and that TSH and FT4 alone is insufficient evidence to base a dose reduction decision on.

    Also ask the GP to test TPO and TgAb antibodies to find out whether you have autoimmune thyroid disease otherwise known as Hashimotos. When you get antibodies results then post on this forum. If you have Hashimotos then people will give you good advice about managing the condition.

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