I've been diagnosed with under active thyroid about 3 years and most of the time feel pretty rubbish. Everytime my dose is raised, usually by my own request, I feel good. But the doctor always says the TSH is too low and they ask me to lower my dose again. Only for me to go back to feeling rubbish again. So frustrating!!
This is a copy of my last results, during these blood test results I was on 75mg daily. This was after lowering from 75/100 alternating days. I lowered at the doctors request.
I'm still on 75 daily and feel pretty awful.
I'm my opinion, I think the T4 is too low? What do others think? It would be good to hear others opinion.
Thanks in advance!
Also my prolactin levels is shown as they have been testing this because it's slightly raised.
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Lbstyle
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Can you please add the ranges for these results, as ranges vary from lab to lab we can't interpret your results without them. Going by most ranges we see here, your FT4 does look as though it's pretty low but I'm guessing your TSH is within range.
You are legally entitled to printed copies of your blood test results and ranges
UK GP practices are supposed to offer 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.
Obviously you need vitamins tested regularly too and BOTH TPO and TG thyroid antibodies at least once, if these have never been tested
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I'm actually under the endo at the hospital, but I could give the receptionist a call and ask for a copy 👍🏻 I often have my vits tested as I suffer with low vit d and calcium and slightly low iron xx
Hi SlowDragon, may I stick in a question about our right to know blood test results? I had bloods done 6 weeks ago but still don't know the results. The bloods were requested by an endocrinologist. My GP practice doesn't have access to these results and the endo secretary says she is not authorised to give me the results. She said it is only the endo doctor who can tell me the results, so I keep ringing them and leaving messages but nobody is coming back to me. Is it time to raise a complaint to PALS or do I keep ringing the endo department? Many thanks.
Go into your gp surgery and they can phone lab and ask for them to be emailed to surgery or sent down the electronic link. That’s how I get all my hospital results unless I remember to add copy to gp on form.
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 Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)
Are you hashis? Your GP is going to make you ill - or never give you the opportunity to get well. How dare they reduce your dose via a phone without looking at your symptoms- or checking if you are over-medicated.
I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4, you might find the comments about hashimotos and over-medication useful in your battle to be well.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.
What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low.
My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important.
The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! For your doctor - testing your bloody T3 and taking note of a T4 result that is nowhere close to the top of any reference range I’m aware of would be a bloody good start!
He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient.
Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿♀️ #fightforyourthyroid
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