Do you have any recent thyroid and vitamin test results
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
Do you have Hashimoto’s
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I have only recently (past 2-3 months) been diagnosed, so they have started me on 50mg. I am currently having monthly blood tests to get my levels stable again. I was very late to realise I had it & my body was in a bit of a state by then.
During tests I was tested for vitamin deficiencies - results were my iron is low. I was also tested for auto immune diseases, which came back negative.
However, my white blood cells are extremely low. The doctor thinks this is related to my thyroid but can't say for certain.
I also have alopecia, which is getting worse.
Thank you for the blood test tip, I certainly don't do this! I go in the morning but by then I have taken my tablet & had breakfast! The next test I will follow your tips.
Do you think it is worth getting independent tests?
Nonetheless, the tablets make me feel rotten. I can barely eat. I am going to change them again today to the brand Actavis, now rebranded to Accord. Fingers crossed I react better to them.
I don't know, but reading all the forum replies I should be able to ask for print outs and be able to share! Tests due on Wednesday, so I'll grab results then and share.
This is all so brand new... I have no idea where to start!
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
Frequently GP only tests TSH which is completely inadequate
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
Far too frequently people get left of low dose too long
Important to get dose increased as fast as tolerated
As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)
Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine
Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up
When GP starts you on 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine
But (here’s the bit most GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop
So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday
So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine
So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine
Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....and many patients can’t tolerate starting on more than 50mcg and need to increase slowly. Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase. But we still very often need to increase up to full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
This happened to me when I lowered my dose. The smell of food was nauseating and I could not cook or barely eat. First time in my life that ever happened! Of course now I’m on almost triple that dose and those problems are gone.
Not those symptoms, but I got very bad migraines when I switched to Mercury Pharma thyroxine. I had been on Wockhardt for 20 years since I had my thyroid removed, never had any problems getting that brand until the coronavirus problem, I have tried different pharmacies but no-one can get them. Now I am on North Star, which is not perfect,seems stronger than Wockhardt and gave me upset stomach when I first took them, but that has settled down now.Also they make me feel a bit hyper and I can't sleep very well, but only other one is Teva and I tried that before and it didn't agree with me, so I will have to put up with it.
Teva didn't agree with me too!! Apparently it doesn't agree with a lot of people.
It is funny isn't it, some people say its the brands/companies of the tablets and other people say it's because the dosage is incorrect. It's all a little confusing.
Thank you for this though, all this information is great to know!
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