I have an underactive thyroid-diagnosed 2018.
recently I have been experiencing bad anxiety and depression (also diagnosed for many years). Had anti depressants upped a couple of months ago but notice no difference. Just noticed t3 and t4 haven’t been tested since 2021. Do GPs just tend to check TSH and if that’s ok then the thyroid is seen to be ok?
thank you for taking the time to read my post.
Welcome to the group.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
The NHS frequently only test TSH & sometimes FT4, almost never FT3 which is the active hormone that gives us energy and helps us function well. Many members pay for private tests to see the results they need to feel well.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
Are you taking any supplements?
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
thank you so much for taking the time to write so much there. I am very grateful. My TSH was last tested in January and was 3.8. T3 and T4 tested June 2021 T3 4.3 and T4 15.2.
I should be able to find the other tests when they were last done too.
I take vitamin D, fish oils and a multivitamin. I mostly avoid dairy as I seem to be intolerant somewhat. I’m not sure about gluten though. My Mam had thyroid removed and she has coeliac. I regularly get tested for that too but no signs apparently.
ferritin 86 in January, folate 2.3 in October 2022, B12 207 in October, vitamin D (not listed as D3 though) was low in February, 39, so they told me to take supplement.
I really need to figure out the numbers and get on top of all this.
When you're not feeling up to much and a bit low it can be really hard to get on top of details like your thyroid dose and vitamin levels. Make yourself a few notes and see if a friend or relative can help you.
People who feel well on Levo usually have a TSH of 1 or just under. So your TSH at 3.8 is too high. GP's are scared of giving us too much thyroid hormone so instead don't give us enough leaving us with many symptoms. You need to make an appointment face to face with your GP and insist on a dose increase of 25mcgs.
As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that medic say.
When you quote your blood result numbers you also need to quote the reference range for each test as they vary from lab to lab.
Even without ranges though I can see you have some very low vitamin levels which isn't surprising as you are on too lower dose of Levo.
Multivitamins are not recommended in this group for a number of reasons, including being too low a dose to raise levels to optimal, including iodine which is not recommended when hypo and including iron which prevents absorption of the other vitamins and should be taken apart from other vitamins/Levo.
Are you vegan or vegetarian?
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
gb.pipingrock.com/methylcob...
cytoplan.co.uk/vitamin-b12-...
Folate - aim for a level of 20. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
Ferritin. Your level looks good, however if you have any inflammation this can give a false high.
It's definitely worth trying the strictly gluten free even if you are negative for Coeliac. Fully dairy free may well benefit you too.
wow Jaydee I honestly cannot thank you enough for all of this. I will write my results out properly tomorrow with ranges. There is so much to take on board and so little information given at point of diagnosis or follow ups. I’m sure you all hear this several times a day though.
I have a couple of books by Izabella Wentz-chosen randomly so not sure of reliability. I see now that it really is something I have to learn everything about.
I had to get B12 shots a couple of years back but they said they were happy with most recent results. I will look into all of the information about vitamins too.
Thanks again for your support. I will definitely be sticking around here.
Unfortunately your situation is all too common whichis why this forum is so busy.
Izabella Wentz has a lot of sensible advice and information in her books, she is wellthought of in the thyroid community.
Before you start any B vitamins I think you should be pushing for further tests for pernicious anaemia unless you are vegan or vegetarian. Your results are terribly low.
thank you. I have booked a phone appointment for Sunday and am going to write everything down. I feel like a lot of the time, GPS seem like they are paying for your blood tests out of their own pockets with their reluctance to give us what we ask for. I realise this is obviously something that could be overused by people who don’t need it but I’m just so sick of feeling how I am and just lying here thinking that the past few months of feeling rubbish, having anti-depressants increased and being offered anxiety and sleep medication has all been an utter waste of time. It’s so upsetting and frustrating.
I feel very blessed to have come across this forum. Your wealth of knowledge is amazing and so very much appreciated.
I am going to have a good read this weekend and go gluten and dairy free.
I seem to have a lot of B12 deficiency symptoms.
I'm not vegan or vegetarian.
does avoiding biotin for a week mean to not take any B vitamins or avoid all food sources also?
Food sources are fine regarding biotin as low quantity. Its mainly B complexes that contain biotin which you dont seem to be taking.
If you're not vegan/vegetarian then you need to push your GP further for pernicious anaemia testing. Don't start any B supplements until you have completed investigations for this as they take 3 months to get out of your system.
Would also recommend them testing for coeliac disease as that can cause malabsoprtion.
If they test you for coeliac you still need to be on gluten at that point.
Try dairy free to start with. Its a bit of a learning curve and buying whole foods are easiest and visiting the free from supermarket aisle. Try different supermarkets as some have better selection than others.
I am going to have a good read this weekend and go gluten and dairy free.
I would suggest that you give up only one of those things to start with.
Lots of people do find going gluten-free helps them to feel better. But not everyone.
Fewer people try going dairy-free, but some people do find it advantageous.
If you give up both at once and get an improvement in how you feel you won't know if it is because of going gluten-free, or dairy-free, or both.
Giving up more foods than you have to just makes your life harder, reduces the foods you can eat, and hence also increases the risk of you ending up with missing nutrients.
So, I would suggest you try going gluten-free for three months, and only keep it up permanently if it helps.
The same comments apply to going dairy-free, but leave that until you have come to a conclusion about giving up gluten.
Oh, and going dairy free doesn't include giving up eggs.
thank you humanbean. I already mostly avoid dairy as I have an I tolerance to it. I’ve noticed this getting worse lately in that when I could manage a sneaky bit of chocolate here and there I am now less able.
Good news on the eggs too!
Try vegan chocolate
so far I have been disappointed but shall keep looking.
Available in supermarkets too
Vegan chocolate cherries - delicious
amazon.co.uk/FOREST-FEAST-C...
These are good
amazon.co.uk/Vegan-Chocolat...
Not tried these
Raw chocolate company
Good morning Jaydee
What do you mean by thyroid antibodies and what test would I need to find this out please?
Thanks again for everything
There are a few different types of hypothyroidism. One of them is autoimmune and you would know you have that if you have a positive result for thyroid antibodies. Its also called Hashimoto's disease or Hashi's for short.
There are different types of thyroid antibodies and the NHS only test one type - TPO or Thyroid Peroxidase antibodies. Many people but not all people with Hashimoto's have TPO antibodies, others only have the other type that the NHS doesn't test for - Thyroglobulin (TGab) antibodies. You could ask at your next GP appointment if they can test you for TPO antibodies. There are also people with Hashi's that never show positive antibodies.
If not then you would need to test privately. The cheapest test currently available is from Randox Heath which includes antibodies if you're OK with finger prick tests. randoxhealth.com/at-home/Th...
thyroidpharmacist.com/artic...
I was sure I’d had these tests but cannot see them on my records. I have added them to the list for tomorrow.
Thank you
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
TSH is too high
Request 25mcg dose increase in levothyroxine and retest again in 6-8 weeks
ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test
Essential to maintain OPTIMAL vitamin levels
vitamin D (not listed as D3 though) was low in February, 39,
Retest vitamin D now
How much vitamin D are you currently taking
Aiming for vitamin D at least over 80nmol
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
folate 2.3 in October 2022,
B12 207 in October,
Please add ranges on these.
Folate looks likely deficient
B12 too low, assuming it’s serum B12
Hi SlowDragon and thank you for your reply.
I am currently taking 100 micrograms of Levothyroxine. the brand is Accord.
I've been taking 1000IU Vitamin D for just under 3 weeks-brand Vitabiotics
Vitamin D supplement is not high enough
With vitamin D below 50nmol GP should prescribe 1600iu everyday for 6 months
See NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
amazon.co.uk/BetterYou-Dlux...
One spray = 1000iu
Suggest you take 2000iu or 3000iu per day and retest in 3-4 months
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
will try topping up on the vitamins in absence of proper tests.
folate 2.3 in October 2022,
B12 207 in October,
were these tests via GP
What were ranges
If you have been taking a multivitamin since these results, levels might have improved
B12 and folate looked to be very low…..too low for a multivitamin to perhaps offer much improvement
Retest levels
More likely to need daily separate B12 and daily vitamin B complex
Hi Underactiveclare, if GP say's "TSH is in normal range so you don't need a dose increase" these references will come in handy (some written specifically for GP's by cardiologists and endocrinologists) all suggest GP's keep TSH between 0.4 /0.5 to 2/ 2.5 in patients on Levo.
healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-in-range
This post explains why 'normal' is not always 'good enough' : healthunlocked.com/thyroidu... (explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine.~ 'the-shoe-size-analogy' *high =over2.5/3ish )
Thank you tattybogle. I will have a read of these this afternoon
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
NHS England Liothyronine guidelines July 2019
sps.nhs.uk/wp-content/uploa...
Page 9
Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron
See page 13
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
I do sympathise but try alternative ways to fighting depression, like mindfulness and focusing on your needs. I recommend a book by Eckhart Toller, ‘ The Power of Now’ and read it slowly. I found it extremely helpful, together with breathing exercises and meditation. When I committed to that, my thyroid tests results improved, went almost back to notmal. Labs don’t do T4 or T3, even if the GP requests it; they only do it if a consultant requests it. As already said in some of the replies, finding a good one is a problem. However, as pointed out by Slow Dragon, there is a list compiled and I shall certainly make use of that - thank you
Thank you Britpol. I am a big fan of mindfulness, meditation and all things self-care related. I remember reading this book years ago but will dig it out again on your recommendation 
Did you say that there is a list of GPs?
I really appreciate your help!
yes, SlowDragon responded to you 9h ago giving a link to follow to get a list of GPS and Endos compiled by Thyroid U.K.
I have read Tolle’s book and reading it again in small chunks; it really is very positive, giving you confidence that you can overcome your problems by being totally present. It works for me, having gone through a very stressful uncertain time as regards my diagnosis related to a blood clot in my brain and the possibility of another stroke ( had two mild ones). Good luck!
I will have to have a break and come back to it as I cannot see it. Wood for trees…
Sorry to hear of your health concerns. I’m glad you’re able to take a lot from the book.
Always test TSH, Ft4 and Ft3 together
Test vitamin levels at least annually
Test BOTH TPO and TG antibodies at least once for autoimmune thyroid disease (hashimoto’s)
Test early morning and last dose levothyroxine 24 hours before test
Work out which brand levothyroxine suits you best and always get that brand
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29
randoxhealth.com/at-home/Th...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Wow! Again thank you so much!!
I am honestly so thankful for everyone taking the time to reply and provide such fantastic support. I will reply to individual replies. I just wanted to leave my blood work here as I know a few people have asked for more information.
I really appreciate everyone here and am delighted to be learning so much.
See my comments as before.
Are you vegan or vegetarian?
Your thyroid is definitely your problem issue along with the low vitamin results caused by being under medicated.
SlowDragon results ^
thyroid seems to have settled based on todays results so must be vitamin related
Your TSH is still too high.
How did you get on with the GP on Sunday?
Dr heard what I said and then did limited blood tests. I posted them on here yesterday. TSH at 1.2 now. She said I can make an appointment to discuss results but seemed really happy to tell me no to increase in meds and no to b12
Was test done early morning and last dose levothyroxine 24 hours before test
Do you always get Accord brand at each prescription
FT4: 15.2 pmol/l (Range 10 - 22)
Ft4 only 43.33% through range
FT3: 4.3 pmol/l (Range 3.1 - 6.8)
Ft3 worse at only 32.43% through range
helpful calculator for working out percentage through range
Most people when adequately treated will have Ft4 at least 60-70% through range and FT3 at least 50-60% through range
So low Ft4 and TSH over 2 shows you need next 25mcg dose increase in levothyroxine
Accord don’t make 25mcg tablets.
Request GP prescribe 50mcg tablets so that you can get Accord and cut in half to get 25mcg daily
Get a weekly pill dispenser to save cut half
Meanwhile improving poor vitamin levels will improve conversion rate of Ft4 to Ft3
Folate - Serum 2.3 ug/L (2.0 - 18.8)
Folate only 1.8% through range
Serum Vitamin B12 207 nmol/L (150 - 1000)
B12 only 6.7% through range
Helpful calculator
Clearly these are both extremely low
I would imagine you have some symptoms of low B12 and low folate
Ideally, especially if have low B12 symptoms ……..Request GP test for Pernicious Anaemia before starting on B vitamins
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week or two
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Vitamin B complex for low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Note that improving folate when B12 is very low is not a good idea. Taking folate before starting B12 supplement or B12 injection can lead to severe neurological problems.
en.wikipedia.org/wiki/Subac...
It is vital if you intend to supplement both B12 and folate that B12 is started at least a week before the folate.
So
1) Get dose increase in levothyroxine and request testing for Pernicious Anaemia
and ……if not had thyroid antibodies tested for autoimmune thyroid disease, get GP to test thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
2) increase vitamin D supplement and add magnesium supplement
3) start separate B12 supplement (or B12 injections if GP says you need these ) and then add separate vitamin B complex
Retest thyroid and vitamin levels 6-8 weeks after increasing levothyroxine
Hi SlowDragon
I now have comprehensive notes/checklist to take to gp and request blood test. I would have been lost without all of your help so thank you so much. I will post to say how I’ve got on.
TFT, Full Blood Count, folate and B12 definitely being tested. Receptionist unable to work out what the rest meant. Booked for tomorrow at 08:10. Will remember not to take thyroxine and see how we get on. Its a start...
Well I am completely disappointed to be told that my bloods are all normal and I won't be getting an increase in Thyroxine or anything else for that matter. they were meant to do a full thyroid check and only tested TSH. Feeling very frustrated and annoyed
Test Range Result
HbA1c levl - IFCC standardised N/A 33 mmol/mol
Serum folate 2.0 - 18.8 6.4 ug/L
Serum Vitmain B12 150 - 1000 251 ng/L
Serum TSH 0.30 - 4.50 1.2 mIU/L
What illnesses can cause thyroid problems?
26, Under active thyroid causing period problems & looking to get pregnant 
Endo says thyroid is not the cause of my problems - now what?
Can overactive thyroid cause stomach problems?
