last week I was told I had underactive thyroid and that my TSH was the highest he had seen this year! Having looked at posts on here, I went to get a print out of my blood test. Unfortunately, I can't even see B12 but I might not be aware of all the different names. This is what I have TSH = 18.07 mu?/L, T4 level 12.8 pmo/L = range 10.00 - 2100pmol/L. This seems to be in the normal range? And this is all I have for Thyroid Function test.
I then have a series of other things for FBC such as Haemoglobin estimation, Red Blood Cell, Haematocrit etc . This is all new to me, I have been given Levothyroxine and have taken 9 tablets so far.
Would be really grateful if anyone could tell me what other information I need to establish before I blindly go taking tablets for the rest of my life especially as my T4 doesn't seem to be too low. High TSH result though!
Many thanks in advance
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Tayamil
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How do you feel? I'm guessing not great or you wouldn't be posting ...
Your doc is right - TSH is seriously high - you really want this less than 2 and probably less than 1. At the same time, we can't tell how low free T4 is with no lab range. There's quite a difference between say the Medichecks lab range of 12 - 22 (at which point you would be scraping along the bottom) and my local hospital lab range of 9 - 19 at which you would still be too low but higher at nearly 1/3 through range.
What dose of levo are you on? A "standard" starter dose would be 50 mcg a day; or your GP may dose by weight [1.6 mcg x each kg you weigh, rounded up]. Whichever, it's important to take it every day and re-test after 6 - 8 weeks, and increase as necessary until TSH goes down and free T4 and free T3 are both nice and high in range. Get the earliest blood appointment you can get and have a 24 hour gap from taking your previous dose of levo.
Next time, see if you can get more testing done. Ideally, you need TSH, free T4, free T3, thyroid antibodies and key nutrients - ferritin, folate, vit D and B12. Your GP may be reluctant to test the nutrients, but I have had limited success by saying these are the tests recommended by Thyroid UK. Make sure you get the actual results (not just being told "in range" or "normal") - and post them here, in a new post, along with lab ranges, so people here can help you understand them.
And please don't worry about "blindly taking tablets" for the rest of your life. The aim is to get the correct dose of replacement thyroid hormone so you can live the rest of your life feeling well and doing the things you want to do
that's a really detailed and useful reply thankyou. I started to feel breathless on walking up slight hills etc (unusual for me) walking much slower etc. I have had a chest Xray all fine. However, I can probably trace symptoms back over 20 years in terms of hormonal imbalance. Hyperemis in pregnancy, 8 months of severe debilitating dizziness a few years after, Early menopausal symptoms- ice cold flushes!!! I am oestrogen dominant and now 3 years beyond menopause so hormones probably play a big part.
Recently got eye floaters too. Other than breathlessness and hair falling out for past 3 years I haven't noticed major problems. I have however had 2 .5 years of chronic stress and a series of deaths and grief is very prevalent. I was given 100 mcg but phoned up and asked for 50 to start with. I have read about Hashimoto's and feel this is relevant to me.
OK - start low on 50 mcg and get re-tested in 6 weeks. You need the antibody testing to prove if you have Hashi's - it's the biggest single cause of being hypos, so could well be. A lot of people with Hashi's find they feel better by going (strictly) gluten-free, even if not coeliac. And a lot of people with Hashis have leaky guts, which makes the nutrient testing particularly important. Hair falling out is often an indication that these aren't great too.
You have plenty of hypo symptoms, so do take your levo regularly. I find leg pain when walking my biggest clue that I'm under-medicated.
And if the GP won't do all the tests I've mentioned, look into private testing - LOTS of people on here do them. Hopefully SlowDragon will pop up in a bit with a summary of the testing available
PS do you have the lab range for the free T4 test? If so, add it to your post [you can use the "more" button on the right to edit your post]
When we are hypothyroid, especially if the cause is autoimmune thyroid disease (aka Hashimoto’s) then low vitamin levels are extremely common. About 90% of primary hypothyroidism is autoimmune thyroid disease
Extremely important to regularly retest vitamin D, folate, B12 and ferritin
Low ferritin can cause breathlessness and hairloss
do you have any vitamin test results?
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
Bloods should be retested 6-8 weeks after any dose change (or brand change) in levothyroxine
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If antibodies and vitamins haven’t been tested yet, get them tested at next test
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If you have only started taking thyroxine (9 tablets) then it will take a little time for your pituitary to respond and then get lowered TSH. It's called the "hysteresis effect" where the pituitary response lags the dosing. It can take weeks for this to settle down.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
High cholesterol is linked to being hypothyroid and should improve as TSH drops
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