Help and advice

[lissa-is-me]

Good Afternoon

I was wondering if some could help me or point me in the correct direction.

I have had an underactive thyroid for around 16 years, for which I am currently on 175mg of Levothyroxine per day. My levels have always been ok, especially since I had weight loss surgery over a year ago.

In all the time I have had the condition, I have never been referred to anyone about the condition it has just been a case of the odd one or two blood tests per year and my medication increased to reflect the results, but my Gp only ever tests me for is my TSH and T4 levels, never for T3.

I have had my latest results back and it tells me that my T4 is 19, so at the top of the normal range. However, my TSH is very low compared to normal at only 0.05 for past two tests done, which prior would normally be 0.1 level.

Was just wondering if it will just mean me reducing my medication slightly? Should T3 always be checked? When raised before Gp told me it does not effect anything, hence why they don't do the blood tests for it.

Is there anything I need to talk to them about when I see her in 5 days time? I feel that after all these years im just left to get on with it and hope all is ok.

Thanks

[greygoose]

No, that's not why they don't test it! They don't test it because they don't understand the results, they didn't learn about T3 in med school, they have no idea what it is or what it does. And, if you think I'm exaggerating, that's what a couple of doctors have told me. If they knew anything about T3, they would know that it affects everything. It is the active thyroid hormone - T4 is basically a storage hormone that doesn't do much until it is converted into T3 - and it's the cause of symptoms when it's too high or too low. But, they don't know anything about symptoms, either!

Would help if you gave the actual range numbers, rather than just saying 'it's high'. Ranges vary from lab to lab, and very often the top of the range is 22, so 19's not that high. But, if you're taking 175 mcg levo, and still not feeling well, the odds are that you're not converting that T4 to T3. But, you won't know that unless you get the FT4 and FT3 tested at the same time.

Your GP is particularly ignorant.

[shaws Administrator]

Welcome to our forum and am sorry you have hypothyroidism.

This is the method (you may already be aware) when you have a blood test, is to have the blood draw at the earliest possible time - you may have to do so weeks ahead. It is also a fasting test but you can drink water. Also allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.

Also request GP to test B12, Vit D, iron, ferritin and folate when next blood test is due.

Always get a print-out of your results for your own records and post if you have a query. Always state the results (figues in brackets)to enable members to respond.

If it is more convenient for you you can have your blood tests privately. Follow advice above for blood draw.

[SlowDragon Administrator]

My levels have always been ok, especially since I had weight loss surgery over a year ago.

After weight loss surgery it’s especially important to regularly retest vitamin D, folate, ferritin and B12

Absorption of nutrients can be compromised

What vitamin supplements are you currently taking

Dose may need adjustment if you have lost a lot of weight

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Or after any significant changes….eg weightloss surgery

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

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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 and last dose levothyroxine 24 hours before test

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Longinthetooth]

HiI'm no expert & can't give you medical advice but am one of the many members on here with an under active thyroid. After a lot of ups & downs with levothyroxine I now seem to be as balanced as one could wish for. My weight is a bit more than I would like but I can get on with life.

I wholeheartedly hope you can get satisfaction from your doctor. You had weight loss surgery, well done & I'm sure you will head in the right direction now. It's not easy keeping the weight off but maybe a change of diet will help. It's advocated to go gluten- free (no flour) with thyroid disorders which I did 4/5 years ago. Try to make your own food from scratch without all the additives & eat whole food; butter, eggs, full fat milk, cheese, all veg, etc. It seems difficult at first, taking a little more time but worth it.

Don't despair, you've reached out to this forum who only want to help & are very patient with us all.

From a friend.