I have ALL the symptoms of under active thyroid and have had two lots of blood tests in 4 months. Both tests showed normal TSH, antibodies ok but T4 level at 10.5 and 11.5 respectively. Dr says no need for treatment 🤷♀️. When I asked what was to do about my symptoms she then offered more blood tests for steroids and inflammatory markers.
I am confused and frankly exhausted 😩 .
Any suggestions please?
Sarah
We can't advise unless you tell us the results for tsh, ft4, Ft3 and their ranges.
Have you had vitamin levels checked? Proper levels of those are essential too.
Thank you.
Dr only stated that TSH normal and T4 11.5 when it should be between 12 -20. She also said the antibodies were fine.
I know nothing more than that 🤷♀️.
She said T4 not low enough for thyroxine to be prescribed but would have more blood tests to be taken at 9am for steroids and anti inflammatory markers to be checked.
I know it’s vague but I am totally new to all this.
Sorry 😐
That's okay. The first things to learn are that we need to be our own advocates and to be proactive.
We need to keep a record of all blood results and their ranges (the number in brackets after the result.). Also keep a diary of how you feel. That way you can match up blood levels and symptoms.
The doctors say blood results are normal but normal covers a range of results. For example a range for ft4 (free t4 hormones in the blood) is 10 - 22. You would be normal if your result was 10 or if your result was 22 or any number inbetween. We need to find the result we feel best at-our optimal normal.
You are entitled to ask your surgery for a print out of your full results, so if you get those, please post them here so people can comment. That would be the first step. Your T4 is under range - very low
Thank you. I will get the results
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 will 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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
20% of Hashimoto's patients never have raised antibodies ...so if both TPO and TG antibodies are negative ask for ultrasound scan of thyroid
healthunlocked.com/thyroidu...
Get the actual TSH figure,it’s suspicious that they quote the fT4 and dodge the TSH. A low fT4 with a non-elevated TSH is abnormal, a mild form of central hypothyroidism which I call subnormal TSH secretion. It can cause quite severe forms of hypothyroidism because it leads to low thyroid hormone levels and impaired T4 to T3 conversion.
Thanks but 🤦♀️😱. I don’t really understand. Trying get my head around all the terminology.
Should I be worried about all this?
Sarah
There’s a high chance you are hypothyroid.
Hypothyroidism can be caused by a failing thyroid gland in which case the pituitary secretes more TSH to stimulate the thyroid to work harder. This is called primary hypothyroidism.
Hypothyroidism can also be caused by a problem with the pituitary which fails to secrete enough TSH. The thyroid receives insufficient stimulation and so doesn’t secrete enough hormone. This is caused secondary or central hypothyroidism. Central hypothyroidism is a term usually reserved for severe cases where the pituitary is damaged and also fails to secrete adequate amounts of other hormones.
It appears I that your pituitary is perhaps underperforming if your TSH is not elevated. It’s also possible that your TSH is elevated and your doctor has not told you.
Dr said TSH was normal but T4 a bit low (11.5 when range is between 12 and 20).
More blood tests next week for steroids ( I assume cortisol) and Inflammatory markers. Are these tests for the pituitary gland perhaps?!
I'm not sure but I don't think so. Ask for the actual TSH figure.
Will do thanks
I will ask to see all results so I can show them to this group
Thanks for your helps guys
I’ll be back 😷
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
You are legally allowed printouts of your results. Ask the receptionist, not the doctor. Some surgeries have online access, which is better because you can post them straight on here. The results will have the ranges in brackets of with a small letter "R" after it. As in "FT4 11.5 (12-20)".
The "F" means "Free" Some results measure the total T4 as well but that is less important.
It's rather overwhelming at first, but keep reading and asking questions and things should gradually become clearer.
"When I asked what was to do about my symptoms she then offered more blood tests for steroids and inflammatory markers."
Being hypothyroid affects the whole body and tends to throw other hormones out of balance. The adrenal glands produce steroids among other things. They also work together with the thyroid to regulate the body's metabolism. I can understand why the doctor wants to do these tests, though they might show very little, but the problem is that you feel so ill and need help NOW.
If you have central hypothyroidism you would need other tests such as pituitary. Getting your actual TSH result would show if that's likely. But as others have said, an OK result merely means it's in range. Many people are hypothyroid with a TSH above 3 and for healthy people it's usually 2 or under, but the official range usually goes up to 4. something.
One thing you could do is ask for a clinical trial of thyroxine. I always say that if it's a trial you can't blame them if it doesn't work! It may also be a good idea to make a bullet list of your worst symptoms and how they affect your life. Concentrate on things like depression, tiredness, pain, heart irregularities etc that are more likely to convince a doctor you need urgent help. Many people have had to give up work because of untreated or inadequately treated thyroid problems.
Thank you 🙏
I don’t really understand. Trying get my head around all the terminology
It can be quite a daunting learning curve initially - but there is lots of useful stuff ont he Thyroid UK website - and helvella has produced an excellent glossary - pinned on the right - which you will find really useful. Good luck x
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