Finally taking ownership!

Hello to you all. I am new to this forum and have spent the last couple of weeks reading as much as I can to try and find out how best to tackle my hashimoto's hypothyroidism, take ownership of my health and getting myself feeling well.

I was diagnosed in 2008 and have never been symptom free, I started on 25mcg of thyroxine and am now on 125mcg but actually feel like my symptoms are getting more prominent. I have an appointment at the doctors tomorrow and from what I have read and going to ask for the following blood tests - TSH, TT4, FT4, FT3, B12, Vit D, Ferritin and Folate. I have also been doing a temperature diary which is showing my temperature ranging between 35.5 and 36.2. I have never questioned the ‘no action needed’ results I have had over the years so requested my most recent results out of curiosity. The results secretary was really helpful and printed everything since I moved to Hertfordshire in 2011. Below are the most recent results I have had that relate to tests I am going to request, everything is in range so wondering if the doctors will refuse to re-test.

TSH - March 2014 - 3.07mu/L (0.35-5.00)

Serum Free T4 – November 2013 - 12.9 pmol/L (9.00-20.00)

Serum Vit B12 – January 2012 – 387 mg/L (180-914)

Folate – January 2012 – 4.6 ng/mL (2.70-34)

Ferritin – January 2012 – 29ug/L (20-275)

I have beta thalassemia minor so this is the highest my ferritin has ever been, it has been known to drop to single figures and hospital admission threatened. I also have Gilbert's syndrome so liver function test always come back abnormal.

Any advice anyone can offer would be gratefully received and thank you for all the advice and knowledge you have already shared within the forum as it has been invaluable.

5 Replies

  • Welcome to the forum, Mrs.PFrost.

    Your TSH is too high so your FT4 will be low and make it difficult to convert to sufficient FT3. Ask your GP to increase your Levothyroxine until TSH is just above or below 1.0 which is comfortable for most people. Dr. A. Toft, ex-president of the BTA discusses medication and thyroid levels in this link

    You don't need TT4 if your GP does FT4. Total T4 measures all your T4. Free T4 measures the unbound T4 available for conversion to T3. Even if your GP agrees to request FT3 the lab may decline to test it if your TSH isn't suppressed unless your GP writes 'central hypothyroidism' on the request.

    Your B12, folate and ferritin were low in 2012 so it's good you are requesting retests.

    If your GP is young s/he will probably be baffled by a basal temperature graph. They aren't taught in med school about it but s/he may know that low temperature is a symptom of hypothyroidism and indicates undermedication.

  • Thank you for your reply Clutter, that has been really helpful and has helped get it clear in my head before seeing the doctor tomorrow. I shall go armed with all the information shared.

  • Mrs P. I merely wish to say hope all goes well with your GP. A word of caution for Hertfordshire though.... if you end up seeing an endo be wary of QEII. I had a fight with them when I lived south......they had an interesting interpretation of the thyroid guidelines in terms of reference ranges. Travelling to Luton in the end ...... Now in the chilly north.

  • Hello LKA-dot, thank you for that, I was going to see how this results came back and how the GP interpreted them and see if an endo was needed. I would look at the recommended list held by Thyroid UK as I was referred to an endo at St Alban's who was very nice but specialised in CFS, so my thyroid was never checked and was given a CFS diagnosis!

  • All went well with the GP, she was happy to request all the tests and saw the logic and need for them. She wrote an essay on the form as wanted to make sure the lab understood she wanted them all done and the reasons why, so fingers crossed. She has even requested antibodies as this was done back in 2008 when diagnosed by my previous NHS Trust so she couldn't see the results electronically and wanted to double check them and compare to my paper file!

    I'm going to go today to have them done and have not taken my levo as have read throughout the forum this would interfere with the results, having never realised this before I'm wondering how true previous results are. However with my new found knowledge I have decided to draw a line and take yesterday as day 1 on my journey to feel 'normal' :)

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