HELP

Hi I am getting more confused. frustrated with my diagnosis and lack of treatment. I am seeing an Endocrinologist who has decided to give me no treatment and to see me in 6 months.

My results are as follows

TSH 11.0 mlU/L 0.27 - 4.2

Free T4 10.6 pmol/L 12 - 22

Free T3 4.6 pmol/L 3.1 - 6.8

Anti - thyroid peroxidase >1000 IU/ml <100

Serum Folate 9.67 ug/L 2.50 - 19.50ug/L

Serum Ferritin 53.3 ug/L

Serum vitamin B12 313.7 ng/L 180.00 - 900.0ng/L

i did ask for a vitamin D test but not sure that is on my printout, i have lots of other results including liver function, serum electrolytes full blood counts etc. How is vit D result recorded?

Is anyone able to understand or give me any feedback other than "Normal no action" which is what i am getting from GP.

I did advise endo and GP that Levo didn't seem to agree with me as my joints became inflamed and sore and i seemed to gain more weight on the medication.

I am at a loss as to what to do next. I have tried the levo for a third time and the same symptoms are appearing. I do not feel particularly unwell just fat. oh and achy when taking levo.

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6 Replies

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  • Janeycp,

    You need some form of thyroid replacement because you are overtly hypothyroid with TSH over range and FT4 below range. It's remiss of your GP to tell you "Normal No Action". If all 4 makes of Levothyroxine make you feel unwell your GP or endo should/could have prescribed liquid thyroxine or Liothyronine (T3) to see whether you tolerate them.

    Your doctors, rather than helping you, seem to have abandoned you. Would you consider self medicating T3 or NDT?

    Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

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

    Folate halfway through range is optimal.

    B12 can be deficient <500. If you have the symptoms of B12 deficiency outlined in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice about supplementing.

  • Thank you for your reply, i will ask GP about other forms of Levo i have only ever been prescribed one type.

    I have thought of self medicating but wouldn't know where to start and am afraid that my GP wouldn't support me ? Are you aware of any uk GP's prescribing NDT ? and or T 3?

  • Janeycp,

    Bad reaction to Levothyroxine tablets is often due to the fillers in the tablets so liquid thyroxine which doesn't have fillers may be more tolerable.

    NDT isn't licensed for UK use so it's rarely prescribed on the NHS. T3 usually needs a recommendation from a NHS endocrinologist before GPs will prescribe it.

    If you self medicated you would start with a low dose to see how you tolerate the NDT or T3 and would increase dose gradually until you are optimally medicated. If your GP won't support you you can order private thyroid tests to check your levels and guide dosing and members here will guide and support you.

  • (((Janeycp))) There are enough wise words on the forum for you to successfully self-medicate. Top right, search Thyroid UK and away you go. Or scroll down to Topics on the right hand side and pick one or two. Do trial NDT first, as it is easier and cheaper to source. Put up a new post and ask for suppliers of Thai NDT by private message...try Thai first, as it's the cheapest. There is no 'best' NDT - we all respond differently and there is no one size fits all - but you know that already with your levo experience :)

    Your GP is a useless tool. As Clutter has pointed out - you are not borderline wait and see hypothyroid, your numbers are overtly hypo and without treatment you will only feel increasingly ill. Levothyroxine, this forum will show, does not suit everyone but everyone suits levothyroxine according to the UK nhs protocol.

    Fight for your right to party, Janey, but don't expect much help from the nhs. And BTW change your GP, maybe ask for a second opinion endo - LouiseRoberts will send a list of not-so-clueless endos if you ask - choose one nearest if you must but my personal advice would be - don't bother. I am not medically qualified, but I have suffered on levo, just like you x

    Good luck

  • Your Endo and GP both need sacking! Sorry not very helpful I know ☹️

  • janeycp your antibodies show you have Hashimoto's. Left untreated it will continue to destroy your thyroid and the damage will be irreparable.

    Try to insist on being treated. And as Silver_Fairy says - Endo and GP need sacking!

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