zero thyroid

[VivGrn]

What does zero thyroid mean in a thyroid function blood test?

[PurpleNails Administrator]

What was exact item tested & result & range.

0 as a result is rarely seen. Very low TSH is often shown as <0.01 as that’s the test not detecting any TSH.

A doctor might describe this as having zero thyroid function, but if your taking replacement the hormone (FT4 & FT3) are not going to be 0.

[VivGrn in reply to PurpleNails]

Thank you for answering Purple Nails,I take 125 mcg levothyroxine The test was as routine thyroxine function test.

The doctor has reduced my medication to 100 mcg with a view to doing another test in eight weeks.

[PurpleNails Administrator in reply to VivGrn]

Ask for full results, reducing on TSH alone completely inadequate.

Unless FT4 & FT3 over range reduction may not be necessary.

How do you feel, are you currently feeling unwell / over replaced?

*mcg - not mg.

[Jazzw in reply to VivGrn]

As PurpleNails has said, that might not have been necessary.

Ask the receptionist at your surgery for a print out of your blood test results.

If you’ve got a GP who’s reacting solely to TSH results you might end up becoming undermedicated very quickly. Sadly, many GPs are taught at uni that thyroid disease is simple to manage—that isn’t always the case.

[Poppy_Ann in reply to VivGrn]

My ex is on a large dose due to having most of her thyroid gland removed due to cancer the surgeon who was dealing with her stated that she should have no problem with it in the future due to the cancer can only grow on her thyroid gland and only when it is producing thyroxine which it should not do with the dose of thyroxine she was on, several years after she had the operation on her thyroid gland a new doctor tried to give her a lower dose as she had a high level in her blood test in the end after I told him the history of her thyroid gland he agreed to leave her on the high dose, it prove's doctors do not read the patients history before they try to fix the problem you have, if she had not told me that the doctor was trying to reduce her level if she had just gone with the doctors advice the cancer could have returned destroying what was the small amount of remaining gland.

[Fifteen in reply to PurpleNails]

Hi PurpleNails, are you saying that 0 (<0.01) TSH does not occur when you are taking T4 and T3 replacements? I am on levo and thybon henning and my TSH is <0.01. My GP is very concerned. Should I be also?

[PurpleNails Administrator in reply to Fifteen]

<0.01 is the test minimum so the < less than denotes the test can’t detect any TSH.

It’s possible more sensitive test could detect a level but at this point it’s excessively low or suppressed.

It means the pituitary isn’t sending a signal for the thyroid to produce.

Presumably you take thyroid hormones because the thyroid isn’t supplying enough hormone - so at this stage the TSH can’t be relied on because taking Levo & especially Lio the TSH lowers.

Doctors are taught the TSH should be in range but often that means the FT4 & FT3 become very low & thats will result in hypo symptoms.

FT4 & FT3 shouldn’t be over range either but most feel well with FT4 in top third and FT3 over 50%.

[Fifteen in reply to PurpleNails]

Thank you for this

[witchcat43 in reply to Fifteen]

TSH is usually suppressed when taking T3…unfortunately most GP’s seem unaware of this and panic, my doctor told me I was now hyper as my TSH was 0.02, after arguing with her about the difference between T3 suppression and hyper I walked out and refused to see her again.

[Fifteen in reply to witchcat43]

GP I have never met or heard of is

[Fifteen in reply to witchcat43]

A GP I have never met of or heard of before I too phoneme about my results on Monday. I am dreading the call. He/she will not have read any of my history.

[witchcat43 in reply to Fifteen]

Was anything other than TSH tested?

[Fifteen in reply to witchcat43]

Full testing - at the request of my laryngeal cancer Consultant. Only Potassium low and I addressing that. I am on T3 through a private Endocrinologist. Private heath cover has helped me stay alive - but the medical training here denies women the right to good health. Perhaps we should have bring a legal 'Class Case' challenge

[witchcat43 in reply to Fifteen]

How were your T4 and T3…also, how do you actually feel?

[Fifteen in reply to witchcat43]

They are fine. I am under a lot of stress trying to move home. Without my T3 I do not care to think about how I would. It is bad enough now.

[witchcat43 in reply to Fifteen]

Well as SlowDragon said…refuse to reduce your dose, they’re far too happy to keep us unwell rather than actually learn more about the thyroid.

[humanbean]

It suggests to me that you've had your thyroid removed. I have no idea whether that is true.

[Fifteen in reply to humanbean]

No, I had laryngeal cancer and the radiotherapy destroyed the thyroid. No GP or Consultant had thought of this until I asked my ENT Consultant. He was shocked as he had not thought of that. At least he has now read up on this. My breast cancer Consultant does not believe anyone needs T3. I respect him for his breast cancer skills and am shocked at this. And so the fight xontinues

[humanbean in reply to Fifteen]

That is horrifying - that the doctor treating your laryngeal cancer didn't realise its effects on the patient. They should know these possibilities.

[Fifteen in reply to humanbean]

Hi Humanbean. The ENT Consultant I identified with help was outstanding. He immediately knew what treatment was needed, understood the impact on my life and rearranged his schedule to operate within a week. He saved my voice.The only Consultant my GP had heard of kept saying 'well it could be 'this' or it could be 'that'.....

What has happened to the days when GPs developed a list of respected Consultants in each field and kept track of their repuations? Or was I just fortunate to have a superb GP when I was in Sydney - a woman GP, by the way.

[SlowDragon Administrator]

Refuse to reduce dose levothyroxine ……Unless you feel over medicated ?

Just testing TSH is completely inadequate

What were your results?

You’re legally entitled to copies of your test results and ranges

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually

What vitamin supplements are you currently taking

Do you always get same brand levothyroxine at each prescription

Recommended on here that all thyroid blood tests early morning, ideally before 9am

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 and money off codes

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

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/

[Fifteen in reply to SlowDragon]

Thanks, SlowDragon. All fine except my potassium - that result explained a lit. The tests were done only because I got my laryngeal cancer Consultant to request them. The stress these ignorant and arrogant medicos put on us.I read that the Government is going to include more female conditions in the training of medicos. Of course, the list did not include thyroid. The Government is prepared to spend a fortune on treating obesity and depression. Why not spend something on thyroid education- 50% of both problems would be resolved

[SlowDragon Administrator in reply to Fifteen]

Then refuse to reduce dose

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

If Ft3 is not over range you’re not over medicated

Getting full thyroid and vitamin testing done yourself

[Fifteen in reply to SlowDragon]

All I am concerned about is getting a referral to my private endo. BUPA requires one each time I see him.Can the GP refuse to provide it?

[SlowDragon Administrator in reply to Fifteen]

I don’t think so

A letter of referral is a formality with private consultation

[helvella Administrator Thyroid UK in reply to SlowDragon]

A GP can refuse a referral letter - and can charge for one if for a private consultant.

Getting a referral from your GP

It's best to see your GP first if you're unwell or have symptoms. Talk to them about whether you might need a specialist assessment or treatment.

If your GP thinks you need to see a specialist and you want to pay for it privately, they can write a letter of referral to a private consultant or specialist explaining your condition and your medical history. You may be charged for this.

Your GP will only refer you to a specialist if they believe that specialist assessment or treatment is necessary. If they do not think it is, they do not have to refer you – either privately or on the NHS.

If you disagree with your GP's decision, you can ask them to refer you to another healthcare professional for a second opinion (an opinion about your health from a different doctor).

Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.

nhs.uk/common-health-questi...

Above link is for England - the other three nations might have different policy statements but I doubt whether any differences will be of significance.

[Fifteen in reply to SlowDragon]

Thank you. That is reassuring. No doubt I will be charged. Last time I was told that £15 was the fee but it was waived in that instance

[Poppy_Ann]

I think it means either there was a fault with the test or you need to see your doctor to sort it out

[Fifteen in reply to Poppy_Ann]

The GP practice has totally new doctors. It only does phone consultations. No-one reads the patient notes. I should have sued the practice when the GP ignored the larynx symptoms and left for months before he panicked. He sent me to a Consultant who could not even identify the problem. I found one through friends. He dismissed the breast cancer symptoms- the cancer was exactly where I indicated the pain was. I am planning to move home soon. Hopefully the next GP will have qualified to fulfil their oath to help people and cause no harm