Hi everyone, sorry this is so long but really need some advice...I was diagnosed with hypothyroidism around 13-14 years ago in my early 20s (now 35). I have been on 50mcg per day of levothyroxine since then. I have annual blood tests after which I'm always told that there's been no change and to continue with the same meds. It's never really been explained to me exactly what they are testing for, what my levels are or what they mean.
Last time I had a blood test I didn't hear anything from the GP so phoned the surgery to check that everything was OK. The attitude was a bit "Why are you even asking? We'll tell you if there's a problem" so I don't feel very well informed. I had a GP at uni tell me that I was borderline hypothyroid when I was 19 or 20 but when I went to the GP back home and asked them to check again as I was having symptoms, he laughed and accused me of self-diagnosing. He arranged a blood test anyway and a week later put me on levothyroxine because my thyroid was actually underactive.
I've been doing some research recently and a lot of people are saying that the NHS don't test for all the relevant hormones. I'm wondering if I need further tests. My hair has been gradually thinning since my teens and looks terrible now - it's so upsetting and I'm thinking about it constantly. My periods have always been what I would describe as irregular (doctors disagree). My cycle can be between 24 and 32 days. Even being on the pill did not regulate it and made things worse in some ways. I've had various blood tests and scans and they have never found anything else that's likely to be causing this. My husband and I have been TTC for almost 9 months with no luck and although I realise it can take longer than that, given my age, thyroid problem and irregular cycle I am starting to worry.
I want to go to the GP about all this but not sure where to start, what to ask for or if they'll even take me seriously. Any advice would be much appreciated!
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AutumnLeaves6
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
There are a few patient to patient tips that you would probably benefit from regarding vitamin levels, optimal thyroid levels and blood test timing.
50mcg Levo is just a starter dose. Usually we retest every 6-8 weeks, increase after each test until TSH at lower part of range.
Many GPs are content if our blood results are just within the reference range, anywhere in the range. We need TSH to be at or below 1 where most people feel well. Optimal vitamin levels help our bodies use our thyroid hormone well and eliminates symptoms from low levels of vitamins which are common in hypo people due to poor gut absorption.
Do you have a copy of your latest blood results that you can share with us? 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.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
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/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
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.
Do you do tests as per the protocol recommended here?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & 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. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg _+ a measure of T4 at around 100 mcg -
T4 is a pro-hormone, and a storage hormone, and needs to be converted in you body into T3 - which is the active hormone that runs the body and around 4 times more powerful than T4 - with the average person looking to find, convert to T3 around 50 T3 daily - just to function.
Do you know the reason for your thyroidoidism - is it Auto Immune ?
Just being ' in a / the range ' is not optimal and even being ' in the range ' can leave you with symptoms of hypothyroidism -
as it is more about where in the ranges you feel best and where your metabolism kicks in -
allowing your body to metabolise well your food, build and restore and replenish your body 's needs overnight and give you enough energy to get through the next day and do all that you need to do without feeling like you've run out of energy.
The thyroid is a major gland responsible for full body synchronisation - from your physical ability and stamina through to your mental, emotion, psychological and spiritual well beig - your inner central heating system and controller of your metabolism.
When thyroid hormones are low you body will short circuit - and supply the main pieces, like the heart, lungs and brain first and maybe leaving you a bit short on energy, sleep, aches and pains, slow bowel, and or just feeling a bit ' off ' :
No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Conversion of T4 into T3 can also be compromised by any chronic long term illness, any physiological stress ( emotional or physical ) depression , dieting and ageing - so it's not necessarily a quick fix and can get a bit more complex.
So. in the first instance we need to know what level your T3 and T4 are, circulating in your blood stream - sadly in primary care a T3 and T4 are rarely run so most forum members end up having to run this test themselves -
and it makes sense to also run the ferritin, folate, B12 and vitamin D at the same time so we have as full a picture as possible of where you are in your thyroid joirney and we will talk you through all the readings once you start a new post with the results and ranges.
By all means ask your doctor first if he will run a TSH, Free T3 and Free T4 +antibodies, inflammation, and these core strength vitamins and minerals and around 10/11 biomarkers -
- but if you meet a brick wall there are Private blood companies listed within the Thyroid UK website - which is the charity which supports this open, patient to patient forum. and where you can read further about all things thyroid thyroiduk.org
It is advised when having a thyroid blood test that you leave a 24 hour window from your last dose of T4 - and ideally the blood test should be by around 9.00 am as this should give the highest TSH which sadly is all your doctor probably looks at - but which - once on thyroid hormone replacement, a very unreliable measure of anything :
Also this must be a fasting blood test - so just drink water until after the blood draw and then take your Levothyroxine - and you should wait at least around an hour after taking T4 before you eat or drink anything -
and if taking any supplements and anything containing biotin - stop these around a week before hand so we measure what your body is holding rather than that just ingested :
So. here are the bare bones of it. I hope it makes some sense, but its ok to keep asking questions as that's the only way you'll become your own best advocate and be able to feel better than you currently do.
You start by asking the receptionist at the surgery to print out your latest blood test results. If you are in the UK, it's your legal right to have a print-out. You need to see exactly what was tested and exactly what the results were. Post them on here - results plus ranges - and we can explain them to you.
You're right, the NHS do not do all the necessary blood tests, but even if they did, doctors would not know how to interpret them, I'm afraid. But it is possible for you to get bloods done privately. Details of private blood testing companies here:
Hi, I'm not sure I can help but I can definitely extend my sympathies, re: GPs not offering any help. The NHS only tests TSH, which doesn't show the full picture, especially that their values deemed "normal" are not normal at all. I would suggest you take a private thyroid test and look at all the other markers, including T4, T3, FT4, FT3 and antibodies for Hashimoto's. I find it scandalous how the health system doesn't offer any help these days and we have to pay to privately to diagnose ourselves! I've had several private tests done - the biggest obstacle is getting your blood drawn as you most likely have to travel to larger cities if you live outside of heavily populated areas or pay for a nurse visit and the costs can escalate quickly. Look up Randox to see if they have any clinics near you. I think Superdrug does hormone testing as well, but only available in larger cities. If you are TTC, you would also want to look at your level of sex hormones FSH and progesterone, especially. Unfortunately, synthetic contraceptives can really mess with your thyroids. Look up videos on YT by women sharing their thyroid stories (Hashimoto's in particular) and how they managed to conceive. There are so many inspiring success stories, but I really don't think you can reply on GPs these days.
It’s highly likely you are on an inadequate dose of levothyroxine
Far too often GP will only test TSH which is completely inadequate
First step is to get access to your blood test results and see EXACTLY what has been tested
ESSENTIAL to test vitamin D, folate, B12 and ferritin at annually as well
On levothyroxine we MUST maintain GOOD vitamin levels for good conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
Low vitamin levels tend to lower TSH, especially low iron/ferritin
Hair loss suggests low iron/ferritin
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 some GP surgeries still 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.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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
In conclusion, we found that pregnant women with elevated TSH levels had an increased risk of miscarriage in early pregnancy. In fact, TSH levels between 2.5 and 4.87 mIU/L increased the risk for miscarriage, with TSH greater than 4.87 mIU/L increasing the risk even further.
Thank you all for your replies. That's so much more information than I've ever got from a doctor! I will call the GP later and ask if I can get a copy of my latest blood test results.Interesting that everyone is saying to fast before a thyroid blood test. I've always been told fasting wasn't necessary.
I live in a large city so there are private clinics around if I don't get anywhere with the NHS. Will start with checking my latest blood test results.
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