I have been taking 125mg of Levothyroxine for around 8 years, but still feel unwell. My blood tests are always considered 'normal' for this dose. The tests requested by the GP for my review are: TFT, Fasting Lipids, Liver function, Glucose, U+E Creatinine. I am not told the details of the results, just that the dose is fine and to continue. I don't know if the TFT tests both T4 and T3.
I have constant brain fog, no energy and weight management problems, but also have intermittent 'burning' sensations in my feet and loss of sensation in my toes, the tops of my feet and some parts of my lower legs. The GP said that this was probably nerve damage from an earlier back problem, but the back specialist gave me an MRI and said that no damage was caused, as my spine is not compressing any nerves.
I asked the GP to be referred to an Endocrynologist, but was told that this wasn't necessary, as my blood results were normal and that it wasn't NHS policy to refer for Hypothyroidism.
I feel let down by the system, but don't know how to move forward. I am due my annual thyroid review and want to be prepared this time, not fobbed off with 'your results are normal, go away'.
Any advice will be most helpful.
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Littleshopofhorrors
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You need to have all your bloods done including t3 and vitamin levels eg b12 ,d, calcium etc. So find a list of a full comprehensive screen. And ask for a copy of the test so you know exactly what is going on. It is your right and there duty to do this. If any levels are low I would suggest getting that normal. Even if all your readings are normal but you still feel ill . Then you could see a private doctor to get t3 it is in my opinion the feel good medicine for us. Which means lower your t4 meds and replace with t3 combination. Then buy your next meds of t3 off the internet as only about ten pounds a month then. You can not believe nhs are doing the right thing as most don’t. You know how you feel and you have to look after yourself and manage this. Good luck
If we are to be in better control of our health and manage our condition, even if we can't be fully autonomous, the first step is to be proactive, and access copies of your blood and other test results. This is a right in law, protected by the Data Protection Act 2018 and the EU General Data Protection Regulation. So the first thing to do is call into reception and ask for copies of your last results to be printed off. All practices are supposed to provide online access to patients since 2015, but this isn't always the case; so whilst there, ask also to be given online access to your patient records - sometimes this is only basic access, sometimes more comprehensive, it varies, but take along 2 proofs of identity so that you can be authorised whilst there.
"It wasn't NHS policy to refer for Hypothyroidism"
This is not true. If a patient's condition is not resolving and/or the GP feels it is beyond their competence to treat, a referral to a secondary care specialist can be made. However, whilst we have the right to ask for a referral, we do not have the right to expect that request to be necessarily acceded to if the GP feels it unecessary - but that is different to saying it isn't an NHS policy. You might refer your GP to the relevant guidelines for referral to an Endo: cks.nice.org.uk/hypothyroid...
Note however, that the Endo might receive the referral and deem it unecessary to see you, which is his professional prerogative of course, but it would be a good deal then, to ask for a copy of the GP's referral letter to see what has been said.
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.
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
Frequently the only thing tested by GP is TsH and possibly FT4, this is completely inadequate
So you need to find out exactly what has been tested and equally important what hasn't been tested yet
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. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
ask GP to test vitamin levels and thyroid antibodies if not been done
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
Medichecks currently have an offer on until end of May - 20% off
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Thank you so much for all the replies to my post. I have made an appointment for a private, comprehensive blood test, which I am going to have before my GP review. That will give me a clear idea of all the levels and a better picture of my thyroid health. Armed with this, and the very helpful replies, I will talk to the GP again about a specialist referral. My father died as a result of having Myasthenia Gravis, a severe autoimmune disease, so my blood test will also check for antibodies to see if my hypothyroidism is autoimmune or not.
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