I was wondering if anyone has any advice if they have experienced the same....
Been taking 100mg of levothyroxine for nearly 6 years now. I have my thyroid function test every 6 months which always shows I am “in range” however I have never been relieved of my thyroid symptoms. I still suffer from horrendous fatigue, hair loss, weight gain, feel like I have a lump in my throat, puffy face etc. I have asked my gp a couple of times for full thyroid testing but have been refused as I’m now in range. Has anyone else been in this position, and if so how have you gone forward?? Is it worth me paying for full thyroid testing if my gp isn’t helping. I’m 34 and I feel 84, just so frustrating!!!
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Jennbr
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Do you have any recent blood test results and ranges you can add?
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
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)
Ask GP to test vitamins and 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
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 .
Without seeing your full thyroid panel which should include free T3 free T4 and TSH it is a bit of guesswork here but, if you are taking 100 µg of thyroxine in one dose it is possible or even likely that freeT3 levels in your cells is much lower than your test results would suggest because of negative feedback on The enzyme responsible for T4 to T3 conversion. You may feel better just by splitting your dose into two or three. The other issue is that NHS GPs are almost completely ignorant about the significance of TSH within the lab range which they refer it to. The most common normal TSH level is near to 1.0 and anything over three is much more likely to indicate a hypothyroid state. If your NHS primary care group will not get you the triple thyroid function test then it is probably worth going to Medi checks or some other company to get a private test kit to do at home and get your results that way. The NHS management of hypothyroidism using TSH or even TSH plus T4 blood levels he is woefully inadequate, almost a scandal in this day and age. You absolutely need to know all three indicators and you need to monitor them frequently enough to establish stable levels after any changes to your system. Doing a test as a snapshot every six months can hide all sorts of anomalies and for any clinician to make a judgement of your thyroid status from that data is practically pure guesswork, and based more on tradition and penny pinching than proper modern science.
So you think if I presented these results to my GP it might make a difference? Basically I don’t want to waste money on a blood test that my GP won’t understand or take notice of anyway?
It might! But Sadly the possibility of the GP doing as you say means the blood tests are primarily for your personal interest. I am in a hellish full blown complaint through my CCG over NHS TFTs and doubt it’ll change the world overnight! That said even if it’s just for my own benefit my self funded TFT data is profoundly useful and my GPS have occasionally been receptive. But I suspect the most fruitful and least costly angle is challenging their reliance on TSH and pointing out how far you are off the most common normal level and that you have physical symptoms.
I never visit the GP and self medicate. I order a blood test online it only takes about 4 days to obtain the results. I use Medichecks or Blue Horizon. Blue Horizon thyroidplus11 is a good start, post the results on here with the ranges for answers.
I know exactly how you feel before I was diagnosed even though I could not function properly I had bloods that were normal. I begun to keep a record of symptoms and when they were at their worst I went and got bloods. All I can say is that you know your own body and getting the RIGHT diagnosis is far more important. I've been treated for hypothyroidism for years and it seems that isn't right possibly thyroiditis, I now have a nodule on one side and lesions on the other side my thyroid swells up on a regular basis and feels like something is pushing into my windpipe on both sides of the thyroid. If possible speak to a different gp within your practice. 🌼
ask for a referral to an endocrinologist. They’ll do all the tests or request them at least. You can pay but it can be expensive. How assertive are you being with your gp may I ask ?
As far as the GP is concerned, I’m “normal” so no need to refer. I saw another doctor once, but she said that even if they request a full test, the lab won’t do them anyway 🤷🏻♀️ I’m going to make another appointment this week and try again.
I mean if I thought it was going to be worth it, I would pay for the full blood test. But if my GP is not going to understand what it means, which by the sounds of it most of them don’t, there seems very little point???
It's extremely useful to get full Thyroid and vitamin testing
There's masses we can do to help ourselves
Firstly
Do you know if you have ever had BOTH TPO and TG thyroid antibodies tested by GP? High antibodies confirm if you have autoimmune thyroid disease also called Hashimoto's. About 80-90% of primary hypothyroidism is due to Hashimoto's
Second
Low vitamin levels are EXTREMELY common. Especially with Hashimoto's. Frequently we need to supplement vitamins to bring levels to optimal. Often some are below range, if so can then to take results to GP to be prescribed. Alternatively if the vitamin levels are low, but within range, self supplementing to improve to optimal levels can give significant improvements
Low ferritin common cause of hair loss
Low vitamin D can cause joint & bone pain and insomnia
Low B12 & folate can cause dizziness, fatigue, pins & needles
Third
If vitamins are low and/or high antibodies it's very common for TSH to be low, FT4 high, yet FT3 very low. Hence ongoing symptoms. FT4 and FT3 should be in balance
Improving vitamins can help improve conversion
If you have Hashimoto's then hidden food intolerances are very common. Gluten intolerance is by far the most common.
Thousands of people with Hashimoto's find strictly gluten free diet helps sometimes very significantly
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
This is really good stuff I happen to know that my white cell count has been so high in the past I was told to mention it to the gp. I must say that my gp seems to have genuinely tried to help so I will make sure I mention some of the things you suggest. Thanks 🌼
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