On 100mcg, with TSH of 0.14 but feel hypothyroid!

Have Hashimoto's ( Thyroid was irradiated 30years ago) ( Both my parents have Hashimoto's too) and since then have been on full replacement levothyroxine Most recent tests as below -

Feb 2009 - TSH 3.46 ( no T4 or Free T3 done )

Feb 2011 - TSH 0.99 ( no T4 or Free T3 done )

Aug 2012 - TSH .0.03, T4- 20.6, Free T3- 5.4 ( was on 125mcg)

Dec 2013 - TSH 0.14 ( have been on 100mcg) since Aug 2012)but again,no T4 or Free T3 done.

My Gp now wants to reduce my dose even further even tough I am feeling unwell on this latest dose - weepy, stiff joints, thinning lank hair, feel the cold, mentally, forgetful, and in spite of watching my diet can't lose wight - and am in fact putting it on, but as a senior staff nurse who worked in Clinical Endocrinology, I recognise my symptoms as those of Hypothyroidism, so am at a loss to know what's happening! I requested a referral to the local Endo Clinic - but was told it was " not necessary". However when I asked about a private consultation with an Endo , she is willing to refer me ( I would go to Dr Toft at the Spire Hospital) but charges £25 for the letter! Would this be the next course of action - albeit it would be £150+ for the first referral. Does anyone have any ideas?

6 Replies

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  • If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft and read questions 6. Send a copy to your GP before your appointment and ask to have some T3 added to your T4. Dr Toft says some need a low or suppressed TSH.

  • Is there another GP at your practice you could see? Some are more sympathetic and more willing to treat the patient (rather than the test results!).

    A few thoughts spring to mind.

    It might be that your body doesn't do a good job of converting T4 to T3 and you need to take a T3 replacement (liothyronine). Not at all easy to persuade the average GP to prescribe this though because it's ridiculously expensive on the NHS.

    It might be that you're deficient in B12 and/or ferritin, and/or folate, and/or vitamin D. Those things need to be optimised in order for thyroxine to do its best work. Best to get these things tested, but again, it's not always easy to persuade a GP of the need.

    Have you considered private blood testing using a service like Blue Horizon?See: thyroiduk.org.uk/tuk/testin...

    Once you've got the results you could share them with your GP if they show low levels of free T3/T4 in order to persuade her to refer you to an endo. Private blood tests would work out cheaper than a private consultation.

  • Many thanks,. I have requested Dr Toft's article, and will contact Blue Horizon to arrange a blood test.

  • Your doctor is supposed to work with you on your meds, not tell you what to do so why don't you say that you want to go back to 125 of levo because you felt better when that was what you were on. Just because your tsh was suppressed doesn't mean that you were over medicated just that that tsh suited you. If you even upped your meds yourself and then told him what you had done, he might not be too happy but what can he do. He cannot leave you with no tablets til your next repeat prescription. Also tell him no way are you reducing your meds but want to do the opposite. Good luck.

    Jo xx

  • When my TSH was exactly the same as yours, my gp was quite happy for me to stay on my current dose. I also felt very hypo with the symptoms you describe.

    Serum iron and ferritin levels are really important for your body to use thyroxine. Iron needs to be well within range and ferritin at least 70-90. This can make a huge difference.

    It is also very common to be deficient in various vitamins and minerals. Folate, vitamin b12, vitamin d and magnesium are just a few of the more common ones along with iron. Vitamin b12 really needs to be above 500 for good neurological health.

    Do contact Louise for the list too. You may also need a change in medication and it doesn't sound like your current doctor is going to oblige!

    I hope you get the help you need. You shouldn't have to suffer. There are solutions if you can find the doctors that will implement them

    All the best

    Carolyn x

  • Thank you, Carolyn - its good to know that it's not all in my mind, and to know others have been there too!

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