Frustrated

[Flighty]

Hi I was diagnosed with an underactive thyroid in September 1997. I have been jogging along quite happily on thyroxine reaching a daily dose of 175mg. However around 2016 my blood result came back stating that I was overdosed on that amount even though I felt fine. Anyway I agreed with my doctor that I would reduce to 150mg daily. All fine. However in September 2018 my result came back stating that I was still being overdosed on 150mg! Although I tried to plead with my doctor to stay on that amount, he reduced me to 125mg daily! Not good. January of 2019 I asked if Icould go back on 150mg a day but was just encouraged to do one day 150mg and alternate with 125mg. I have stuck to this regime for a whole year and as a result I have noticed lots of symptoms creeping back in, i.e fatigue scaly skin, bad memory and worst of all problems with my legs. I am seeing doc next week to ask if I could go back on 150 again. Anyone else experienced this please?

[greygoose]

Do you always get a copy of your results? Do you know why your doctor thought you were over-medicated? A lot of doctors only test the TSH, which is totally inadequate for determining thyroid status, and therefore reduce the dose when it actually doesn't need reducing, leaving the patient in a worst state of health. That could be why you've found your symptoms returning on the reduced dose. You are only over-dosed if your FT3 is substantially over-range, not just because your TSH is under-range or suppressed.

[Flighty in reply to greygoose]

Thank you for replying. My doctor just tells me that the path lab have indicated on the report that I am overdosed. I am seeing him next Monday and so I will specifically ask him if my FT3 is over range. Thank you so much for that information I am very grateful. I know I am not feeling right but is proving to them that my thyroid is not getting enough thyroxine. Since my post I have worked out that I have been 265 days on 125mg which results in 6,625 mg less than I had been on!

[greygoose in reply to Flighty]

And your doctor believes that the path lab knows more about thyroid than he does? Change your doctor! This one will just keep you sick. He has no idea what he's doing.

If you live in the UK, you are legally entitled to copies of your blood test results. So, just ask at reception for a print-out - I doubt you'd get an intelligent answer from your doctor, anyway. Then, with the print-out, you'll have all the information you need: exactly what he is testing and exactly what the results are. Post results and ranges on here, and people will explain and advise.

[SlowDragon Administrator in reply to Flighty]

Strongly recommend you get hold of those blood test results BEFORE seeing GP

Get copies of your blood test results from receptionist (and get registered for online results going forward)

Come back with new post once you get results

Never ever reduce dose based on just TSH

[SlowDragon Administrator]

Highly likely only had TSH or TSH and FT4 tested...which is completely inadequate

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

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

Ask GP to test vitamin levels and FT4 AND FT3

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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)

Is this how you do your tests?

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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Highly likely you have low vitamin levels as result of having dose reduced

Low vitamin levels frequently result in low TSH

Vast majority of patients on Levothyroxine need to regularly retest vitamin levels at least annually and need to supplement continuously to maintain optimal vitamin levels

[Flighty]

Thank you all for your replies. They are all very encouraging and I have taken all advice on board. Will let you know outcome of visit to doctor next week.