Advice Please

[Kaylee1211]

Hello,

so here goes - I'm new to all this, so please bear with me - its a bit long winded!

in 2013 I was initially diagnosed with thyroid cancer, had my thyroid out in 2 separate ops. (2013 & 2014) I had radioactive iodine. In 2016 it came back in my lymph nodes in my upper chest area - so had another op and another lot of radioactive iodine.

I was taking 125mcg of levothyroxine, but this was reduced to 100mcg due to the added risk of brittle bones? I was told, following a heart scan that I have a leaky valve (nothing worth worrying about and has probably always been there) but my consultant said I had to reduce the amount due to this also.

I function a lot better on 125, although I think I am now used to the 100.

I have recently been to the GP as I have been experiencing some odd symptoms on my right hand side - I keep getting headaches on the right hand side of my head only, sometimes above the eye, others in the middle of my head and sometimes at the back of my head going into my neck. My right arm gets a sensation of burning (I wear a fitbit and genuinely thought this was burning me!) at the same time I get the same burning feeling in my back, just by my shoulder blade.

the GP is confused and took bloods for everything. She has this morning tried to put me on Amitriptyline (10mg) for the headaches before referring me to a neurologist "given my history"

I've been reading up on these and the interaction they have with levothyroxine, and the side effects etc. and im not convinced this is the right way to go...

I feel like the GP is just throwing pills at me to try and get rid of me. id rather not waste the neurologists time, as im sure there isn't anything serious that cant be dealt with by a GP that knows what they are doing.

I have posted my results below - they mean nothing to me (even after all this time I don't know what's good and what's not) so if anyone can point me in the right direction of what I should do it would be greatly appreciated!

Serum free triiodothyronine level 6 pmol/L [3.8 - 6]

Serum free T4 level 16.5 pmol/L [7 - 16]

Serum 25-Hydroxy vitamin D3 level 27.3 nmol/L

Serum TSH level 0.187 miu/L [0.38 - 5.33]

also - one last thing, don't know if it is relevant - I have a something on my liver (one consultant says its a lesion, another consultant says its a growth - the two are currently fighting it out to decide which one it is!)

sorry for the ridiculously long post!

[greygoose]

It rather looks like you might be slightly over-medicated. Most people would feel well with those results, but you don't - we're all different. So, maybe trying a slightly lower dose would help - say 75/100 on alternate days? You don't want to reduce too much, because your TSH will rise, and after cancer, it needs to be kept suppressed.

[SlowDragon Administrator]

Your vitamin D level is terrible. Has GP prescribed loading dose? Or anything at all

Vitamin D should be above 50nmol, but on Levothyroxine most need it above 75nmol and many find nearer 100nmol better

Essential to also test B12 and folate. These are often low if slightly under medicated. And can cause neurological symptoms

Ferritin also needs testing

Ask GP to test these

Better You vitamin D mouth spray is good as is easier absorbed in mouth. Trial and error what dose you need to increase level. You will likely need ongoing maintenance dose once you reach higher level

Vitamindtest.org.uk £29 postal kit. Ideally test twice yearly

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

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...

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 ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[Kaylee1211 in reply to SlowDragon]

I asked my GP about my vitamin d this morning as it said borderline which meant nothing to me, she has now prescribed something I have to take once a week for 6 weeks then after that a pill once a day for a month then I have to go back and get re tested.

That’s good to know about the b12, folate and ferritin...could be the answer I’ve been looking for! I’m pretty sure these were not tested!

Also thanks for the heads up about the thyroid tests! I’ve always had mine in the morning about an hour or so after I’ve taken my levothyroxine!

Thanks for the advice! It’s much appreciated! 😊

[SlowDragon Administrator in reply to Kaylee1211]

Once all your vitamins are tested and supplemented to bring levels optimal (not just in range) you will need thyroid retested roughly 2 months later - TSH, FT3 and FT4

Improving vitamins may well improve your use of thyroid hormones, then you may need slight increase in dose of Levothyroxine