Hi I’ve been feeling Ill for a while now and just had blood results back today. This is the first time my T4 has ever been tested but doctors have done thyroid a few times and said it’s fine.
What’s the next step? Is this low enough to warrant some kind of medication? My doctors won’t currently see anyone at the moment still due to Covid and only give a 5 min telephone call at the best of times if you can past the receptionist.
Any help would be appreciated. Completely new to all of this. Thank you.
I would ask for a slight increase in meds. This can be done by taking and extra 1/2 tablet on Sundays or if you are on something that is a gel cap, a higher dose a couple days per week. I know many people who do not feel well until their Tsh is solidly under 1.
So you’re not looking at standard hypothyroidism...more likely central hypothyroidism...which many GP’s won’t even know exists
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, thyroid antibodies
Very unlikely to get Ft3 tested on NHS
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)
Private tests are available as NHS currently rarely tests Ft3 or BOTH thyroid antibodies or all relevant vitamins
Thank you. I also had my vit d, active b12, folate and ferritin tested. Vit d and folate were low whilst ferritin and active b12 were optimal. I cannot afford anymore tests and my doctors surgery isn’t seeing patients so not sure where to go from here. It sounds scary and serious though.
What vitamin supplements are you currently taking, if any
All patients should still have access to GP. It might not be a face to face appointment...but you can/should have phone or video call
Email these results to GP and request a consultation to discuss
Before that get hold of list of recommended thyroid specialist endocrinologists from Thyroid UK ...so that you have the name of an NHS specialist that you can request referral to
Improving low vitamin levels can improve symptoms and is important first step
I don't take any supplements and haven't done in years.
My doctors surgery is currently in the midst of a couple of lawsuits because they're not seeing anyone and sending people a 30 min drive away if you're lucky enough to secure and appointment which most people aren't. Its crazy. I've enquired about registering at a couple other surgeries but apparently nobody is taking on new patients at the minute.
So this isn't likely to be a false result then? The only symptom I really have is exhaustion but I guess that could be Vitamin D also. Its all so confusing.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
When doing thyroid tests, very often only TSH is done, when that is within range sometimes nothing else is tested.
Your FT4 is below range.
With a normal, low or minimally elevated TSH plus a low/below range FT4, this suggests Central Hypothyroidism which is where the fault lies with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism). These are missed when testing TSH alone.
I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed (you can only read the Summary):
You could do some more research, print out anything that may help and show your GP along with these results.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
Thank you very much, I live in York and unfortunately my doctors surgery isn’t seeing patients hence me paying for this test which to be honest I couldn’t really afford and i definitely can’t afford any more unfortunately. It sounds very scary and not sure where to go from here as my doctors aren’t seeing anyone.
They are fond of telling patients that things are ok probably because they have no idea how to understand lowthyroid!
I would write to him and ask for a further blood test, give him the list of tests SlowDragon has given you. Keep a photocopy.
Ask surgery for a form to sign in order to receive a copy of your results. Best if they get used to the fact that you are having a copy sooner rather than later.
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