In pain and frustrated

Hi my name is Anne I was diagnosed with thyroid cancer in November last year after having a cyst removed i had a total thyroidectomy in November and now taking 125mcg levothyroxine. I feel exhausted all the time every inch of my body aches especially my back i thought all the symptoms i was having was due to being 50 but reading ppls posts i am relating to their symptoms i would just like to hear from others what they do to deal with the pain

[SeasideSusie Remembering]

Anne2122

You may not be optimally medicated and that will be causing symptoms. Can you post your latest test results, with reference ranges, and members will comment.

If you don't have them then ask at your surgery's reception for a print out. Don't accept hand written or verbal results, mistakes can be made, make sure you get a print out, we are legally entitled to our results here on the UK.

[Hidden in reply to SeasideSusie]

Thank you i don't have my results I don't have a follow up appointment for 6 months feel I have been left to fend for myself trying to get a gp appointment is a nightmare

[SeasideSusie Remembering in reply to Hidden]

Anne2122

You don't need to see your GP. Just ask at reception for your results, as I said you are legally entitled to them and as long as a doctor has already seen them you are allowed to have them.

[humanbean in reply to Hidden]

It's a good idea to take proof of identity with you when asking for results.

[Hay2016 in reply to Hidden]

Hi Anne. In the first few months I hounded the consultant who did radio iodine ablation. When last did they do any bloods??

It could be your vitamin levels need getting up to optimal levels. Did you not get any contacts for the Macmillan nurses? Hound them to get blood tests done now rather than wait for consultant appt in 6 months. Are you saying they whipped out thyroid, gave you levo and said see you in a year ??

[Hidden in reply to Hay2016]

My last consultant appointment was 19th April got bloods done then told how i felt and the weight gain doctor wrote it in my notes and she said see you 6 months if bloods show anything we will write to you haven't heard anything

[Hay2016 in reply to Hidden]

Phone them and ask them what the results are as you’re feeling rubbish.

[Hidden in reply to Hay2016]

I made an appointment with the nurse to have my bloods done i thought it was all part and parcel with having no thyroid thank you for your advice

[Marz]

nhs.uk/chq/pages/1309.aspx?...

The above link confirms the comment by SeasideSusie .

Also you need to know your levels of B12 - Folate - Ferritin - VitD - as they need to be optimal for your Levo to work well and for you to feel well

[Hidden in reply to Marz]

When you get your bloods done do they check for all that

[Marz in reply to Hidden]

You need to specify the tests required as they are not part of a Full Blood Count ....

Did you look at the link above ?

[Hidden in reply to Marz]

Ok thank you im new to all this

[Marz in reply to Hidden]

I posted a link for you in my reply above detailing how you can obtain your medical records. No worries we were all new once 😊 We do have to read loads though in order to be well and stay informed !

[SlowDragon Administrator]

First thing is, have you got actual blood test results yet? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12

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.

If 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)

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request the list of recommended thyroid specialists

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

[Hidden in reply to SlowDragon]

I'm going tomorrow to get my bloods done thank you