Totally confused and worried

[Rosiegough]

I was diagnosed with an under active thyroid about 10 years ago and been on tablets since and seem to tick along nicely until 10 months ago, I was having pre op tests and they discovered I was well overactive thyroid even though my test 3 months earlier was ok, anyway my hernia op was cancelled. Got took me off tablets immediately and retested 2 months later and I was under active so restarted again on low dose of levothyroxine, now I’m on 75 mg and my results are Free T4 22.7, TSH 11.72 and my GP has referred me on to specialist. I am worried sick and a anxious person anyway and obviously more so now. I’ve just turned 60

[greygoose]

Sounds like you have Hashi's. Have you ever had your antibodies tested? If not, ask your GP to test them straight away, don't wait for the specialist. It's nothing to worry about, but knowing you have it, and that's the way it works, will set your mind at rest - and might educate your doctor!

[Rosiegough in reply to greygoose]

I think that was one of the tests I had after they stopped tablets and I think that was ok, thank you for replying, being referred and dr saying they might do head scan has really scared me

[greygoose in reply to Rosiegough]

Well, you do really need to be sure. Do you have print-outs of your results? If not, I would get one, if I were you. You do need to know exactly what was tested and what the results were.

These bumbling GPs! Why do they feel the need to scare their patients to death without proper explanations? I am guessing - and it's an 'educated' guess - that your GP is grasping at straws in a situation that he hasn't been properly trained for, and thinking back vaguely to his med school days has come up with the possibility that it might be something to do with the pituitary… Well, that's highly doubtful, and nothing to worry about even if it were the case.

What you actually need is a thyroid scan, because that can show up abnormalities - such as a thyroid under immune attack - that don't always show up in blood tests. So, don't worry about it, just get the endo to do the right tests:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

and ask him to organise a thyroid scan.

[Rosiegough in reply to greygoose]

It’s all very complicated but I expect I will learn more like I have done with type 2 diabetes which I’ve managed to control with diet only x

[greygoose in reply to Rosiegough]

Yes, it does seem very complicated at first, but you'll soon get used to it.

[Wetsuiter in reply to Rosiegough]

i wouldn't worry about the fact they talked of a head scan. They may be wondering about a tumour on your pituitary gland (even it there is one, they dont often seem to be a big problem). i think its more likely that clinicians are floundering and are covering all bases.

Also worth noting that even if you test negative (or 'normal') for Hashis, it doesnt mean you havent got it. Positive means you do have it, but negative simply means its not showing.

of course anxiety is a symptom of dodgey thyroid one way or another. Keep trying to tell yourself this (easier said than done, I know)

[Rosiegough in reply to Wetsuiter]

Thank you so much

[SlowDragon Administrator]

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

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?

If you took levothyroxine before blood test, Ft4 will be high

Your TSH shows you need 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later

Anxiety is common hypothyroid symptom

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

75mcg is only one step up from starter dose of levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

[Rosiegough in reply to SlowDragon]

Thank you so much, it all seems very complicated x

[SlowDragon Administrator in reply to Rosiegough]

See GP

Did you take your levothyroxine before the test?

High TSH shows you need 25mcg dose increase in levothyroxine

Ask for vitamin D, folate, B12 and ferritin tested

These are often extremely low when under treated on levothyroxine

Come back with new post once you get vitamin results

Thyroid Levels should be retested 6-8 weeks after each dose increase

Always get thyroid test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more effective taken at bedtime

verywellhealth.com/best-tim...

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 or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[Rosiegough in reply to SlowDragon]

Can’t remember if I took it before test, I think I did and I definitely had a hot drink before test but next one I won’t and only have water. Also I do take levothyroxine at the same time as propanol which I won’t do anymore. Thankful for information xx

[MichelleHarris]

Could you have got the wrong persons results? Did they retest that result before taking you off your Levo? Did you feel absolutely fine like normal at the time? x

[Rosiegough]

I was sort of hyper and nervy looking back and I’ve had several tests since restarting tablets.