Hello, I was tested for a possible thyroid problem in March, those results were borderline and due to family history and symptoms I was retested 6 weeks later. That test result said ‘patient is now hypothyroid’ on my notes so I retested last week and the results are now in the normal range.
Is that the end of testing for thyroid issues? I still have symptoms but I don’t know if people test multiple times before diagnosis. I’m just curious if that’s what happens, or do most people only have one or two tests?
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Elland
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.
What time of day have you been testing? TSH which is the most likely thing your GP is going on is highest at 9am so we recommend booking tests for then or as close as possible.
According to NICE guidelines you can get a diagnosis and treatment after 2 consecutive NHS tests with a TSH above range or one above 10.
You really need to get some printed copies of all your thyroid results to see what has happened here. You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception. Start a new post and post the results here with their ranges - numbers in brackets after your result.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private postal testing early Monday or Tuesday morning.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.
My first blood test was 11am, second 8am and third was 9.50am. I can’t see that I was tested for ferritin, folate, B12 or D3. I shall ask for that. I realise that my original post misquoted my second result and it said I am becoming hypothyroid, not that I was hypothyroid.
Also get hold of your actual results and make a new post and post them here for people to comment.
Hypo people find that we have to be very active in our treatment and care. Arm yourself up with a bit of knowledge from reading this group and you will likely need to challenge your GP/s on how to help you feel well.
That test result said ‘patient is now hypothyroid’ on my notes
Why didn't they start you on Levo then?
Do you have the actual test results with their reference ranges please?
Did you do the test as we always advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
My first was 11am, 2nd at 8 and third at 9.50. I’d also had a lot of tea before all the tests. I misquoted from my notes having checked again, after the second test it said I was becoming hypothyroid, not was.
OK, so if you make sure any future tests are 9am then you will get results which will be the highest TSH possible and hopefully get the 2 x over range ones you need. If thyroid antibodies are tested and are positive then that should be a clincher.
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