I take 350mg daily and have now been told this isn’t doing anything at all for me. Today I have been for a scan to be told my thyroid gland is 3 times smaller than it should be. I’m always tired, it’s killing me working 32-40 hours a week. Has anyone else had this?
I’m basically waiting for my results now to see what the next step is as last week I was told I have no T3 and it’s not been present in my bloods for a while now
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MrsAB2020
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Which brand of levothyroxine are you currently taking
Do you always get same brand
What time of day do you take levothyroxine
Do you take levothyroxine on empty stomach and nothing else apart from water for at least an hour after minimum
No other medications within 2 hours
Some need to be four hours away - iron, HRT, calcium, magnesium, vitamin D
What vitamin supplements are you currently taking
Bloods should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
This is taken 6am every day with no food or caffeine until at least an hour after. (I work in the medication industry so know the in’s and outs) My blood tests are every month and I’ve tried several brands now but none is doing anything
To be on such a high dose of levothyroxine, but have no T3, would appear to have one explanation - you are not converting the levothyroxine to T3. (Though there is an outside possibility you have virtually no ability to absorb the levothyroxine.)
The obvious direction would be for you to be prescribed T3 (liothyronine). Have you ever discussed this?
Many people on levothyroxine have vitamin deficiencies, essential to test vitamin levels
We need optimal vitamin levels for good conversion of Ft4 to Ft3
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
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
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/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
You are entitled to get your full results. I suggest and recommend that you ask your surgery (or the hospital/consultant) for a print of them. I think you really need to have the results and the reference intervals (ranges) for
If there is no T3 being produced, why have they not offered liothyronine to you?
T3 is the active hormone and, to a large extent, it is the only thing that matters. (T4 can get transported into your brain, and get converted within your brain.)
If your T4 is 19, and that is on the sort of range that is widely used in the UK, that would be a perfectly reasonable sort of level. Which suggests you are absorbing some levothyroxine. But with a dose as high as 350 micrograms, I am surprised it isn't higher.
I am not at all surprised you are always tired - you must be having to force yourself to work full time!
By the way, it isn't just thyroid blood results that are important. Id' hope you have also been tested for iron (ferritin and others), vitamin B12, Full Blood Count, and possibly many others.
Please do add some background such as how long you have been unwell, your path from initial diagnosis to now, etc.
Was the FT3 actually tested ? Did you see the results ? - or were you just told ? Were you born without a thyroid ... which could explain a little more.
In general, GPs find that they are unable to prescribe it due to local rules (the CCG overseeing their local polices). But endocrinologists are more often able to prescribe.
If you have no T3, if needed your doctor should put in to be allowed to prescribe T3. From what I have seen so far, this is urgently required.
I don't know why your doctor has to spend more than a few seconds finding the cost of T3! The British National Formulary has a list of prices for most medicines. Private prescriptions are usually the NHS price plus a bit. But if you do go down that route, ring round and ask prices - don't just accept the first price.
Why have you not been referred to an Endocrinologist for full testing and assessment? It is absolutely required if you are so unwell and your symptoms have not alleviated with meds. To put you on such a high dose without looking closely at everything is reckless. I'd defo get full private tests done so you have a clear picture of where you are (thyroid and vitamins) but I'd ask for that referral now.
I strongly recommend you push for a referral to an endo in the hope off getting help. Ido know it doesn’t always happen. My GP was very happy to prescribe 550mcg of levo a day with no thought if a referral. I was told only Hashi patients can be referred. My thyroid was destroyed over sixty years ago so I could not be referred. The next boy I saw thought that it would be “harmful” to my health to see an endo. I took matters into my own hands but only because I had studied thyroid health and taken advice from this forum. Whilst waiting to see an endo sort out vitamin levels and malabsorption possibilities before you see someone, then you will be good to start on T3 as needed.
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