Taking meds though feeling unwell again.

[ab1975]

I have been diagnosed a year ago and take 100 mg of levothyroxine every morning as soon as I get up. In the last 3 - 4 weeks I have found myself with the same exhaustion and symptoms from when first diagnosed. Went to docs and got bloods tested, called yesterday and receptionist advised they were 'ok' not sure what that is supposed to mean. Any advice on these symptoms etc would be greatly appreciated. ☺

[shaws Administrator]

What you have to do is go to the surgery and ask for a copy of your results. Make sure the ranges are stated.

I, personally, think that you need an increase in dose.

Many 'professionals' (small p) believe that if our results are in the range - which the top for TSH is around 5 - that we are on a sufficient dose. This isn't true. We need a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the range. The latter are rarely tested.

We need both FT4 and FT3 to be optimal and I shall give a link to explain why.

thyroiduk.org.uk/tuk/about_...

When we are on an optimal dose (one in which we have NO symptoms and feel well) that's the aim. Not as many doctors believe 'anywhere int he range'.

Did you follow the procedure of testing, i.e. the earliest and fasting and allow a gap of 24 hours between last dose of levo and the test?

For a Receptionist to tell you that 'it's o.k.' is not sufficient - if GPs know little he/she knows less - if that's possible.

[ab1975 in reply to shaws]

Hi there, thanks for the swift reply. Eh no I knew nothing about the fasting etc. It was a struggle to even get an appt in the first place and so they never knew what I was there for until I had the appt, then it was just go to the nurse for your bloods to be tested. I will call when I finish work and ask for the results to be sent out then.

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? 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 no longer charge for printing out, (EU rules changed after May 25th 2018)

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

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

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)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

[ab1975 in reply to SlowDragon]

Bloody hell, that is alot to take onboard. I feel really ignorant towards what I actually have. I just thought take this tablet all will be ok, as that is what my doc said at the time. I have read a bit, but what you both are saying is just WOW! I am not an ignorant person In life. My job would tell you otherwise lol. I honestly when diagnosed last year just thought this wee tablet will do the job...until now and I don't feel well again. This time though it feels exaggerated as in the symptoms, due to the fact I am taking the tablet at the right time etc, but I feel worse now. I know all about the new GDPR, but thanks for the advice.