Levo dose three years on and still not human!

[Emhop]

Well after two years being on Levo and constantly begging doctors to keep increasing my dose I’m now on 175mg vit D and B12 tablets and feel ok for a few mths then the crappyiness comes back all the usual symptoms and back to the docs to get bloods done and more Levo! Please tell me one day they will believe me I need more and feel crap!

[Nanaedake]

Slowdragon gave you really good advice in your last post. Did you follow it?

[SeasideSusie Remembering]

Did you get all the tests done that were suggested by SlowDragon when you last posted.

To give you any sort of meaningful reply we need to see results and reference ranges for the following

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

Please tell us exactly what supplements you take and the dose. Both Vit D and B12 have companion supplements that are important.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Presumably you have done coeliac blood test

Are you now on strictly Gluten free diet.?

[Redditch]

Lots of us are self medicating. Sad but true. There are not enough doctors that understand or have the time or give a toss and you need one that does all three.

You're not going to get it.

[HashiFedUp]

I had the exact same thing. Better for a bit then poorly again. I went on NDT in the end. From private endo. Plus Levo plus vit D supps. Hopefully this is it now - it’s a question of adjusting doses and different treatments then back to blood tests and endo. Keep going. You may have to go private to make things change quickly though. I did. Worth every penny.

[Chippysue]

Because levothyroxine is a sticking plaster, Your dr was trained with a toolbox of different sticking plasters, not to find out what the root causes are.

You have to look at everything starting with gluten, dairy, toxins

A good nutritionist can help

Whereabouts do you live ?

[Emhop in reply to Chippysue]

Thank you, I’m over near Nottingham I will get the works private health insurance out and see what tests I can get done by them on everything! I just want to be me again thank you all for the advice

[Chippysue]

It’s awful, I totally sympathise as I was unable to work, had a blue badge and a mobility scooter. I lost 5 years of my life and thankfully my family stuck around. My daughter only told me recently that she did say to her dad that she would understand if he left me, I was in a bad way!

Now with what I have learned I try to help as many people as I can. I haven’t met anyone yet who is super well from seeing a GP or Endo alone.

You are very welcome to come along to the midlands thyroid support group meeting on Saturday 14th. I have been running it for 10years. We have a couple of members who travel from Nottingham by train. The meeting is in Hampton in Arden, Solihull so that it is near to a train station.

Message me if I can help but in the meantime do have a look at dr Izabella Wentz website, books and her documentary series called the thyroid secret. Also dr Sarah Myhill’s website is full of great info too.

You can get well!