I was diagnosed with ‘thyroid disease’ about 10 years ago following blood test and scan (Hashimoto?). Having ended up on 150mcg Levo I was better than I had been though still not great. About 15 months ago my thyroid started aching so after a while I requested a new blood test (overdue) and the results were T4 25.6 range 12-22 TSH 4.4 range 0.27-4.2. The gp reduced Levo to 125mcg. I explained I had quite strong symptoms of under active thyroid and that my throat was constantly uncomfy with a hoarse voice but she didn’t want to know. July I requested a repeat test the results were T4 20 range 12-22 TSH 11.47 range 0.27-4.2, symptoms still bad. Lab left a note to say I needed a retest but I haven’t been informed by the surgery and only know because I asked access to my test results online a few months ago. I am in the process of getting a finger prick test (one failed so waiting for a fresh one to arrive) but feel that even if the results show anything wrong my gp won’t be interested. Any advice gratefully received.
Test results - what are they saying?: I was... - Thyroid UK
Test results - what are they saying?
About 15 months ago my thyroid started aching so after a while I requested a new blood test (overdue) and the results were T4 25.6 range 12-22 TSH 4.4 range 0.27-4.2.
July I requested a repeat test the results were T4 20 range 12-22 TSH 11.47 range 0.27-4.2, symptoms still bad.
So fifteen months ago your high a TSH shows you needed dose INCREASE
Now you are EXTREMELY under medicated
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 or are very under medicated as you currently are
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Recommend seeing different GP ....
Thanks so much for your reply, that explains why I’m feeling so limp all the time and always tired. I ordered my test from medichecks, after not being able to use my sample they explained not to scrape your finger on the top of the tube and not to squeeze too hard to avoid damaging the blood cells. They’re sending me a free replacement so watch this space. I feel a bit defeated already though knowing my gp won’t be interested. Thanks again for all the info. X
You may need to see different GP ...or go over GP head and see an endocrinologist
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists
tukadmin@thyroiduk.org
High Ft4 can be explained if you took levothyroxine BEFORE blood test ....did you?
Make sure last dose levothyroxine is 24 hours before blood test and do test as early as possible in morning before eating or drinking anything other than water
Drink plenty water day before
Stop taking any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results
Tips for DIY finger prick test
I had problems the first time I tried the finger prick test. The second time I followed the instructions in the video on the Medichecks website and then it was easy. Hydration is really important so make sure you drink plenty of water the day before.
Good luck with it.
Haha - not a joke really though, spoke to my doctor who assured me that as my T4 looked fine the TSH wasn't important despite horrid hypo symptoms I'n getting. She did offer to give me another blood test and would include iron, b12 and D - lucky me. My replacement fingerprick test arrived this afternoon, I have 2 early morning starts coming up so it won't be till Monday before I can do it but I'm thinking with NHS attitudes I'll have to medicate myself. Luckily a kind member from here gave me a website that many use to buy thyroxine from so it looks like that's the future. Thanks for your advice and help. I wonder when the NHS will make to move to being thyroid savvy.
Only ever do private blood tests on Monday or Tuesday morning
Remember to stop taking any supplements that contain biotin a week before any blood tests
If testing ferritin levels, stop any iron supplements a week before testing
Aim is to bring TSH under 2.5
gp-update.co.uk/SM4/Mutable...
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine. Ft4 in top third of range
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Thanks again for all your help. I am going to ask for a vitamin test too to make sure. I will try my gp with the Thyroid UK article and try to be not pushy but firm. Yes I did take Levo before both those tests as I didn't know not to. I feel a bit relieved just to know it's not me being a hypochondriac actually so you've helped me in that was already. x
Sorry to bother you again but I can't send the email it's telling me not a valid address
You can enter your name and email address on the Thyroid UK website:
thyroiduk.org/contact-us/li...
That form on website only gets a list of private doctors...not the list of recommended endocrinologists
With Free T4 over the range and a high TSH it suggests either
1) Your Free T3 might be very low. It is low Free T3 which gives people hypothyroid symptoms.
OR
2) You are suffering from atrophic thyroiditis. See this thread on the subject :
healthunlocked.com/thyroidu...
There are, no doubt, other possible causes for your results but the two I've given are the only ones I know or have info on.
Really interesting
Thanks so much for your reply, my aim at doing a private test was to see how my T3 was doing. I've only just started on this journey of discovery really so I can see T this and that floating around all over the place. Coupled with brain fog (so not me in the past I've always had a mind like a trap) it's a struggle to work my way round. Thanks to the help I've had from you guys though I hope to at least come to some conclusion and have some better info to wave at my g. Thanks again x
Hi, did you manage to get the list? I’m in the same place as you and got the list of endos a couple of weeks ago, so if you’ve not got it, private message me your email address and I’ll forward it to you.
Made me feel better just talking to him and not feeling like I was wasting GP’s valuable time with my non urgent nonsense! Grrrrr
Good luck
Before considering starting on NDT you need to get FULL thyroid and vitamin testing done
What dose levothyroxine are you currently taking
Obviously you were extremely under medicated on 125mcg and under medicated on 150mcg levothyroxine
Did you get dose increase in levothyroxine to 175mcg
Do you always get same brand levothyroxine at each prescription
Essential to regularly retest vitamin D, folate, ferritin and B12
These need to be optimal BEFORE starting on Armour or any NDT
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Only do private test early Monday or Tuesday morning and then post back via tracked postal service
Come back with new post once you get results
Thanks so much for your reply. I had blood tests in August which showed all vitamin levels except B6 were ok. The doc gave me a short script supplement for that and I’ve continued to take a good dose b complex since. My t4 was 17.7 (12.0-22.0) and tsh 13.6 (0.27-4.2). The doc has kept me on 125 mcg levo, it’s always the same brand. She refused to test t3 and assured me the levo dosage was fine. I have a private test kit and did send one before but the results were invalid, they said I had probably squeezed my finger too hard to get the blood and that’s about right as I have Raynauds and even with hot water treatment struggle to even get a drop. I used to have those tests at the doctors for warfarin and the nurses struggled too so I doubt I’m going to get a decent sample to send. I will try to arrange for a vein sample and do that test again. Thanks for your advice. Jacky x
My t4 was 17.7 (12.0-22.0)
tsh 13.6 (0.27-4.2).
The doc has kept me on 125 mcg levo, it’s always the same brand.
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
You need referral to thyroid specialist endocrinologist
A TSH of 13.6 is NOT normal
You need vitamin D, folate, ferritin, B12, both TPO and TG thyroid antibodies tested too
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
What vitamin supplements are you currently taking?
Test was before levo taken and had only had a glass of water. I take vitamin b complex and vitamin d. The report back from the test lab said to test again for t4 (no time frame and the doc hasn’t requested it) and said tsh high for ref range, no further action required so I guess my doc is just going by their advice. It feels like I’ve hit a brick wall really. Jacky x
Next step is to get FULL thyroid testing (ideally including vitamins)
TSH, Ft4 and Ft3 plus both thyroid antibodies
IMPORTANT you must stop taking any vitamin supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
All vitamin B complex contains biotin
Stop taking a week before test
Personally I then supplement a separate folate and separate B12 during that week
If you can’t do fingerprick test - you can pay extra for private blood draw at local to you clinic or a few Superdrug stores
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Might be worth paying extra for B H as includes cortisol test
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thanks so much for your advice. Jacky x
Roughly where in U.K. are you
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe correct dose levothyroxine and T3 or NDT (like Armour) if required
...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Optimal vitamin levels are
Serum B12 at least over 500
Active B12 at least over 70
Folate and ferritin at least half way through range
Vitamin D at least around 80nmol
Low vitamin levels are direct result of low stomach acid due to hypothyroidism and still being under medicated
Thanks so much for all this info. I’m near bideford in north Devon so I reckon nearest endo is going to be further than I’m able to travel. I have mobility problems exacerbated by this severe weakness which I think is thyroid driven.
which showed all vitamin levels except B6 were ok.
Please add actual results and ranges on vitamin results
Did you mean B9 - folate
What vitamin supplements are you currently taking
Sorry my mistake, it was b12 which was 192 (197-771). The doc gave me a 2 month course of b12 and when I’d finished it I started taking a b complex supplement so all the b numbers. I also started vit d.
With such low B12 you should have been tested for Pernicious Anaemia before starting on B12 injections or daily B12 supplements
Obviously essential to test B12 and folate again
Just supplementing vitamin B complex may not be enough
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
healthline.com/nutrition/me...
How low was vitamin D
How much vitamin D are you currently taking
Vitamin D needs testing twice year when supplementing, especially early on while you work out how much vitamin D you need to bring vitamin D to at least around 80nmol and around 100nmol maybe better
Vitamin d was well in range I just decided to take that as I don’t go outside that much and In winter I know levels can drop. It’s very hard to tell doctors what to do and what I need. I’ll sort this medichecks kit out and send early next week. I’ll hunt for somewhere to draw blood. You’re very knowledgeable I appreciate your advice. Jacky x
Approx how much do you weigh in kilo
Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo per day
Only took 28 years to get levels right! ….and invaluable help from forum members…more on my profile
The doc gave me a 2 month course of b12
Was this B12 injections or daily B12 supplement
With such low B12 you probably should have been given loading injections of B12
bnf.nice.org.uk/drug/hydrox...
By intramuscular injection
For Adult
Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.
Hi there, it was just a supplement. I feel so stupid, working through reams of information and sadly not taking much of it in. In addition I don't envisage my doctor listening to me as she hasn't in the past. I will give it another go when I get results back from Medichecks though. Thanks for all your help I'm so grateful that you've gone to such lengths to help a complete stranger.Jacky x
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