Apparently for approximately the last maybe eight to twelve months thyroid problems.

[mabaker]

Apparently for the last 8 to 12 months my TSH levels have been dropping and are now at 0.1 which they are saying is abnormal. This has gone on since prior to August last year by chance I found out, ( my GP surgery were making all kind of excuses why I needed to go back to redo blood tests like, "the nurse got your test mixed up with someone else's" then again, "you need to come back due to your diabetes".....I am not diabetic. I asked what was going on ). Well it seems the phlebotomy had been telling the surgery for some time about the TSH dropping lower each time. I have asked to be referred to an Endocrineologist but they refused, so I went private. Unfortunately, it got me no further he wrote to my doctor and suggested that I have another blood test in eight weeks which I have just had done and which again is stated to be abnormal as above 0.1. Please can someone advise me what action if any I should take, because it seems to me to fit in with other problems that I am having, it maybe thyroid cancer. I am 83. Many thanks

[PurpleNails Administrator]

Was just TSH tested? Do you have FT4 & FT3 results?

What dose of levo do you take has it been adjusted?

[mabaker in reply to PurpleNails]

Only TSH done in August, February TSH and FT4, they don't do FT3 or anything else. I have been hypothyroid for 20 years and only ever taken 75mcgs.

[mabaker in reply to PurpleNails]

Only TSH on the first test, that was August 2020 which was stated to be abnormal 0.05mU/L 0.27-4.20mU/L no FT4 results done.

[PurpleNails Administrator in reply to mabaker]

Usually if TSH is not within range the FT4 is then tested by the lab. (This is often called reflex or cascade system of testing). Even when the GP requests FT4 or FT3 it’s automatically not tested if the TSH is in range. So not testing it is madness.

As other say you do need a complete thyroid function and vitamin testing & you may need to look a private options if your GP won’t help.

[SeasideSusie Remembering]

mabaker

Is TSH the only test they are doing? You also need FT4 and FT3 to get a full thyroid picture. This has been mentioned to you before in your previous thread here from 4 months ago:

healthunlocked.com/thyroidu....

Have you had the private tests done as yu said you were going to? If so please post the results along with their reference ranges.

Do you always do your tests the way explained in that post?

[mabaker in reply to SeasideSusie]

I have not had any tests done as yet, I did go to see an Endocrinologist privately and took the previous blood tests I had done, but unfortunately I didn't get very far and came away knowing little more than when I went in.

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Common to have low vitamin levels as we get older, especially B12 and vitamin D

Thyroid testing should be done as early as possible in morning

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 thyroid antibodies

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 .

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[mabaker in reply to SlowDragon]

I am so sorry not to have replied previously, and I don't intend to make excuses but we have recently had so many things to deal with which are hopefully nearing completion. I am sending you a copy of blood tests done from January last year. As you will see Thyroid function test done February 12th 2020 stated to be abnormal, no action been seen. I was never informed about this and only through perseverance did I discover about the one dated August 2020. As you will see in February TSH and Free T4 were done that was all. In August only TSH was done, and no attempt made to advise me of any abnormality. I have been hypothyroid approximately 20years and only ever taken 75mcgs daily, always at around 6am long before eating or drinking anything and at least two to three hours before any other medication. My recent blood test I have had done before taking my Levothyroxin and before eating and drinking anything. I cannot find a way to send them to you.

[SlowDragon Administrator in reply to mabaker]

You can add one photo in one reply

On levothyroxine TSH is frequently extremely low

It’s irrelevant

The most important results are ALWAYS Ft3, followed by Ft3

Essential to test vitamin D, folate, ferritin and B12 annually

What vitamin supplements are you currently taking

We need GOOD vitamin levels when on levothyroxine

[SlowDragon Administrator in reply to mabaker]

Strongly recommended getting FULL thyroid and vitamin testing done privately

If vitamins are low conversion of levothyroxine (Ft4) into active hormone (Ft3) will be poor

Poor conversion results in high Ft4, low TSH and LOW Ft3

[tattybogle]

I read on a previous post of yours that you'd been asked to reduce from 75 to 50 and tried it but felt wrong so put it back up. I have found that a smaller reduction of just 12.5 mcg each day ,(rather than 25mcg) is a more subtle method of adjusting dose, and it may be enough to raise TSH slightly. andd keep the GP's happy.

Perhaps your trend of TSH reducing does simply indicate that you need a bit less levo now than previously, but that the last time you tried a reduction it was by too much of a drop for you.

You don't say what dose you are taking now , is it still 75mcg ?

if so, perhaps suggest to doctor you try 62.5 ? you can achieve this by alternating 50/75 each day or by taking 50 + half a 25 each day.

[SlowDragon Administrator]

Are you also taking any T3?

Even a tiny dose of T3 will lower TSH significantly

Recommend you get FULL Thyroid and vitamin testing....just testing TSH is completely inadequate

[mabaker in reply to SlowDragon]

Tried to send my results but failed. I have not taken any T3, they don't even test T3 here. The results I have are:- 12/2/2020TSH 0.17

T4 20.3 Abnormal

13/8/2020

TSH 0.17 Abnormal

31/12/2020

Potassium 5

Creatine 70

Folate 11.6

B12 325

TSH 0.1 Abnormal

These are the results that I have. It is just the Thyroid results that are abnormal.

[mabaker in reply to mabaker]

13/8/2020 should read 0.05

[SlowDragon Administrator in reply to mabaker]

TSH is frequently extremely low on levothyroxine

Most important results are always Ft3

Vitamin D

Folate

Ferritin

B12

Low vitamin levels lead to low TSH

B12 is too low

Folate - need range if range is 4-60 folate is low

Ferritin, vitamin D and Ft3 not tested

Recommend getting full thyroid and vitamin testing done

Come back with new post once you get results

[SlowDragon Administrator in reply to mabaker]

Results without ranges (figures in brackets after each result) are meaningless

But even without ranges, can see your B12 is low. On levothyroxine we need B12 at good levels, over 500 minimum

Recommend you get FULL thyroid and vitamin testing done privately

When vitamin levels are low TSH drops low and Ft4 goes high......as Ft3 levels drop

We need GOOD vitamin levels for good conversion of levothyroxine (Ft4) into active hormone (Ft3)

Very common to have low vitamin levels on levothyroxine unless we supplement continuously

Especially common for B12 and vitamin D to drop as we get older too

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

If you took your levothyroxine before test it gives false high Ft4 result

[mabaker in reply to SlowDragon]

Thank you for your comments and advice. On my last blood test I went to have my blood test before I took my Levothyroxin and before I had anything to eat or drink. I have now developed a swelling on the right side of my neck. Following a telephone conversation with our GP I had to go in to see her for examination. She has decided to do an urgent referral to the ENT which she says may take time due to the Coronavirus. So I really don't know if it has anything to do with the Thyroid. Once again thank you for your help, it is good knowing that there is someone there who can help and much appreciated.

[SlowDragon Administrator in reply to mabaker]

Private scan costs £150.