Why does doctor want me to go back onto Levothyroxine before I am referred to an endocrinologist?

[Dramlouie]

I have seen various doctors over the years at various surgeries trying to get an endo appointment as I have so many ailments, all low thyroid symptoms. I am now taking NDT and feel a lot better but still feel hypo. My lates test results from July were T4 (9.6 (12-22), T3 4.1 (3.1-6.8) and TSH 0.03 (0.27-4.2). The doctor said I had to come off NDT completely as the endo would request this anyway to see my natural levels. I started to reduce and felt lousy so increased back to 2 grains of Thiroyd. After another phone call she said I should go onto 25mcg levothyroxine and come off the NDT. At the moment I am on 1 grain Thiroyd at 6am and 1 grain at 1pm and maybe half a grain 7pm. I have the 25mcg levothyroxine ready but would like any opinions before I start doing this as I am not happy about it. I don't want to set off my anxiety again as that was just awful. My ferritin level in Dec 2015 was 63 (12-230) and in Sept 2016 was 7.8 (13-150). I do feel breathless sometimes and feel I don't have enough air to speak which makes me feel breathless to hold a conversation. I feel ignored by the medical profession and I cannot understand why everyone knows more about their own condition and I have been told nothing, makes me feel like a hyperchondriac. I am also very very stiff indeed, I am 60 and was very fit but now I cannot even put my socks on, its a job to cut my toenails and my neck feels so weak and grinds and my back hurts when I walk anywhere. Feeling let down and what do you have to do to see an endo? My tinnitus drives me nuts but I notice it fluctuates but is getting worse. My 20 year old daughter had a blood test and the doctor found high testosterone and she is seeing an endo next week, only took her a month to be referred, seems like a lifetime for me.

[Dramlouie]

Please disregard the Sept 2016 ferritin level, it was my daughter's. My antibodies are 280, I can't remember much but the doctor said we all have antibodies.

[Clutter]

Dramlouie,

If you want a doctor to treat you they expect you to follow their treatment regimes. UK doctors aren't trained to use NDT. Most of them only know how to interpret results on Levothyroxine which is why they freak out when TSH is suppressed and have little regard to FT3 levels. Many, but not all, endocrinologists will chivy you to switch back to Levothyroxine.

Your FT3 was low in July on 2 grains. Most people taking NDT are better with FT3 5.0 - 6.8 which will further suppress your TSH. Tinnitus can improve when FT3 is good but its a fine line as some find tinnitus worse when FT3 is high.

It's up to you whether to follow your GP's instruction but it is very obvious to me that reducing from 2.5 grains NDT to 25mcg Levothyroxine is going to make you very hypothyroid. 2.5 grains NDT is equivalent to 162.5mcg Levothyroxine. I wouldn't do it.

I had appalling fibromyalgia type symptoms when my FT3 was below range. Getting FT3 level up and correcting vitD and folate deficiencies sorted out the musculoskeletal pain.

Most of us research our conditions to find out how to improve them. I doubt more than one or two members have had any useful information from their GPs or endocrinologists about managing their hypothyroidism.

Thyroid peroxidase antibodies 280 means you are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine/NDT 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_...

[Clutter in reply to Clutter]

ps re the stiffness, I don't think FT3 4.1 is so low it would cause such stiffness it is difficult to cut your toenails.

[SlowDragon Administrator]

So if you have thyroid antibodies you have Hashimoto's.

Very common to also have low vitamin D, folate, B12 and ferritin with Hashimoto's

Tinnitus is linked to B12.

Ask GP to test all these. You can say you have been in touch with NHS thyroid support group.

Hashimoto's commonly causes low stomach acid and then these low vitamins

Also gluten intolerance is very common. Many find changing to gluten free diet helps

Have you tried Levo in the past?

You may have DIO2 gene if you struggle to use Levothyroxine.

Testing info

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

[Angel_of_the_North]

Because GPs don't understand anything except levo. You need an endo with a clue, not just any old endo. I'd ask [e-mail] for the list of recommended doctors and stay on your NDT.

[Dramlouie in reply to Angel_of_the_North]

Thank you, I have taken my NDT this morning, it didn't feel right going back onto levo, just lost my trust in their advice, thank goodness for people like you on this site.