Beyond annoyed - only tested TSH

Well new GP has surprised me - reported she was going to do a full bloods (some i will post below) as was told Thyroid function was 'normal' yet they only looked at TSH levels ..so annoyed.

TSH 1.22 (0.27-4.2)

Serum T4 - left blank

B12 529 (197-771)

Folate 2.4 (3.9-26.8) - LOW

Cholesterol 4.80 (2.8-5.0) - all others also listed and within range with Calculated LDL top of the range.

Glucose 4.1 (3.9-6.4)

liver function (normal)

Ferritin 185 (13-150) -HIGH

Serum Iron 29 (10-30)

Serum Transferrin 2.0 (2-3.6)

% Iron saturation 57.6% (30-40) - HIGH

(previously bloods showed High Thyroid Peroxidase Ab - 172 (<34)

Told nothing more than low folic acid - put on a second 3 month set of tablets and Iron high so need to have bloods done again in 3 months. So now have no idea what is going on and keep getting 'something not right - we just dont know what' response. Any ideas?

Thanks

Grainne

20 Replies

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  • I presume you are not on levothyroxine

    In which case just TSH is wholly inadequate because it cannot detect Central or tertiary hypothyroid ....go back with an assertive person and ask how she is ruling out those 2 options

  • No i am not on anything for my thyroid - was very shocked to see results and have already booked in appointment to ask why T4 was not tested. Results where given today by the front desk and several phone calls to me. My old GP always tested T4 and mine was always at the lower end of the range.

  • Then you have Central Hypothyroid just like my husband,daughter and grandaughters she is now guilty if negligence bcos you have positive antibodies too

    The antibodies attack the thyroid but in some people they attack the pituarity too read up on

    Secondary/central /pituarity hypothyroid ...and then challenge her

    Have other members of your family got hashimotos or other autoimmune illnesses because that seems to give rise to CH patients or tertiary hypothyroid

  • No idea i am adopted - no idea about family history which doesn't help matters.

  • In your shoes i would be asking the relevant authoriyies /experts trace your birth parents ...it can be done they often do it on the tv programme

  • If you can afford a private blood test they will do all of the ones necessary, i.e. TSH, T4, T3, Free T3, Free T4 and thyroid antibodies.

    Remember blood is drawn at the earliest, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards.

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

  • You have high antibodies- so this is Hashimoto's (GP will call it autoimmune thyroid disease)

    High ferritin can be due to Hashimoto's

    Low folate - do you have a previous B12 test result from before adding folic acid?

    Folic acid supplements mask low B12

    There's no vitamin D test. Low vitamin D extremely common with Hashimoto's

    hypothyroidmom.com/92-of-ha...

    As well as FT4 you need FT3 testing, NHS will almost never do this unless TSH way out of range

    If you can't get full thyroid and vitamin testing from GP

    thyroiduk.org.uk/tuk/testin...

    Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

    All thyroid tests should be done as early as possible in morning and fasting - this gives highest TSH, which as you have found already, is all they look at

    As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/why-changi...

    scdlifestyle.com/2014/08/th...

  • Was told previously i do not have Hashimotos as Thyroid is functioning within 'range' ..he also said i have a touch of hypothyroidism but not enough to be treated (dont ask caused massive argument, a trial on Levo and endo taking me off again due to 'normal' range). Was also told i do not have an autoimmune problem lol. Not sure about B12 being tested before or not - last bloods indicated folic acid being low so was on tablets for 3 months and been off them since May 2017 and now put back on them. Guess battle continues - getting very tired with it all.

  • Time to get ALL your medical test results as suggested a year ago. Then you can compile a factual spreadsheet of your health and a letter to your Practice outlining the neglect.

    Can certainly understand your frustration 😊

  • If you have high antibodies you have Hashimoto's.

    The only way to make progress is private testing. Essential to retest both antibodies, FT4, FT3, vitamin D, B12

    Once you have these results come back on new post for advice on what next

    Personally I wouldn't start folic acid until this test is done

  • If uou cannot get through to these dunderheads simply order NDT and treat yourself

  • Well, one plus is that your GP is admitting something is wrong rather than dismissing your symptoms. As SlowDragon has said, high ferritin might be because of Hashimotos. So you could do with FT4 and FT3 being tested. If GP won't do it, you could get it done through online labs. Medichecks & Blue Horizon are used by people on this forum. You do need vitamin D as very common to be deficient with thyroid disease.

  • Why should the OP have to pay for tests that GP should order its even wirse that an ento stopped her levothyroxine ..complain to the GMC these idiots should be kicked out

  • As much as I have wanted to get private testing its to expensive - i have 5 year old twins and the only earner in the house so its difficult to justify (bills, mortgage etc etc come first). I will see what the new GP has to say on Friday (have booked in to argue my case yet again) and then will see if i can get funds for private testing. Thank you all so much for your advice and links - someday hope to make some headway with the medical profession (pigs might fly first lol).

  • Really hope all goes well with the new GP on Friday. I am sure you will go well prepared with notes and questions. I was diagnosed with Hashimotos back in 2005 with high Anti-bodies but the TSH - FT4 and FT3 were all in range. My Greek GP here told me I would start T4/Levo so the thyroid would be supported whilst under attack from the anti-bodies. Made sense to me :-)

    Sadly few Docs understand the implications of anti-bodies and seem to ignore Hashimotos as they the treatment is the same - so why bother. WRONG. Also are you still taking Amitriptyline ? A little scan around the internet this morning showed up lots of meds that suppress the TSH which will not help your case with the GP. Doubt he/she will be aware of such issues. Google - Amitriptyline and Levothyroxine .....

    I know you are very busy - but I would read through your Posts/threads from the beginning and make some notes. All that have posted have given you excellent advice - worth having another read :-) Click onto your name and all will be revealed !

    Wishing you well :-)

  • Nope came off that drug fast had hateful side effects. Didn't help a bit. Thanks for advice will do so

  • Just to add with all the other excellent advice here- high ferritin (really high would be excess iron and they would bleed you) is often a marker for inflammation. You could ask for CR-P too?

    I use Medichecks- order one day, arrives next. Results emailed within two weeks. Very civilised. I hate doing the finger pricks so pay for someone to take blood.

    The only time my Drs did FT3 was to check my private tests!

  • The ferritin had a warning by it and surgery said I need my iron tested again in 3 months as to high. No mention of bleeding needed yet but stern warning to stay clear of iron tablets .. which I haven't taken for years. Yeah I may have bite bullet and get private test done

  • Mine tends to sit between 300 and 500- no mention of bleeding me lol. Googling seems to indicate over 1000 for haemachrosis. (I think that's right term off top of my head!)

  • Thankfully we don't have haemachrosis .. and yeah iron has to be very high for that. Hard enough dealing with what I do have would hate to add something else into the mix.

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