I’m wondering if someone might be able to advise me. I’ve had blood tests done that came back ‘above high reference limit/borderline’ (Serum TSH level 5.0 mU/L [0.27 - 4.2]) and my GP says treatment is not necessary with this result. However, after reading up on Hypothyroidism, I think my symptoms match - I’ve been excessively tired for nearly 3 years now, also weight gain, dry skin, headaches, heavy periods, sensitive to heat. This is affecting my whole life - I’m just too exhausted to do anything. I’ve had blood tests for everything over the past few years and this is the only one that has shown anything up. Could my symptoms by an under active thyroid? And do you think it’s worth my requesting a trial of medication? Thanks in advance for any advice.
’Borderline’ test results and GP advised treatm... - Thyroid UK
’Borderline’ test results and GP advised treatment not necessary
Do you have the full test results you can add .....or did GP only test TSH
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
Ask GP to test vitamin levels and thyroid antibodies if these haven't been done yet
If you have raised antibodies and symptoms then Levothyroxine should be started as a trial
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and 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 primary 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 .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Hi, yes vitamin D, iron and B12 were all tested and deficient (but now all normal). Second test for serum TSH was the same. Can’t see any other test ms sating FT3 or FT4, but antibody was done and came back ok - Serum thyroid peroxidase antibody concentration 18.2 kU/L
Thyroid antibodies (TPO) screen negative
Testing TSH, FT3 and FT4 is essential
So your TPO antibodies are negative
You will need to test TPO and TG antibodies privately
NHS refuses to test TG antibodies if TPO antibodies are negative. Many people only have high TG antibodies
Also 20% of Hashimoto's patients never have raised antibodies. Ask that GP arranges for ultrasound scan of thyroid
healthunlocked.com/thyroidu...
As you are having B12 injections are you also supplementing a daily good quality vitamin B complex? one with folate in not folic acid may be beneficial.
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low vitamin D and low B vitamins may be linked as explained here
Thanks for all your advice... been at GPs this morning and she has agreed to do all the blood tests and then let me have a trial of thyroxine 
Standard starter dose is 50mcg Levothyroxine
Here's a list for of brands available in UK
thyroiduk.org.uk/tuk/treatm...
Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime
verywellhealth.com/best-tim...
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
No other medication at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Sarah1892
Your GP is following the guidelines. TSH has to reach 10 on two occasions. I think SlowDragon might have a link to the document.
In some countries hypothyroidism is diagnosed when TSH reaches 3.
However, just testing TSH alone is not enough. For a full picture we need
TSH
FT4
FT3
Thyroid antibodies
(Vit D, B12, Folate and Ferritin are also useful).
Your GP may not be able to get them all done but it's worth asking. If not then we have recommended private labs where you can do a home fingeprick test (or venous blood draw at extra cost). Medichecks and Blue Horizon are most often used by members. For the full thyroid panel it's Medichecks Thyroid Check Plus or Blue Horizon Plus Six, for full thyroid/vitamin panel it's Medichecks Thyoid Check ULTRAVIT or Blue Horizon Thyroid Plus Eleven.
If you have positive thyroid antibodies this suggests autoimmune thyroid disease (Hashimoto's) and coupled with an over range TSH then an enlightened doctor should prescribe Levo.
Post any further results, with reference ranges, for us to comment.
Thank you. I’ve an appointment with my GP on 18th so will request those tests and see what happens - will get them done using the other places you suggest if not. All the vitamins were definitely tested and originally all low. I’ve since had D and iron and now have B12 injections and they are now all showing normal. Antibodies were done and normal. But no FT3 or FT4 we’re done.
Sarah
Do you have a copy of your results for Vit D and iron? Were you prescribed anything? If so what and have you been retested since? Was folate tested?
It's important that we maintain optimal levels, "normal" just means that it's somewhere in range. So once we've raised our levels to optimal then we usually need a maintenance dose to keep it there.
Recommended levels are:
Vit D - 100-150nmol/L
B12 - top of range (as you're having B12 injections this should be OK)
Folate - at least half way through range
Ferritin- half way through range
As you're having B12 injections, it's important to also take a B Complex to keep all the B vitamins in balance, although your GP wont know this.
As you've had deficiencies, this could possibly be due to Hashi's, and sometimes Hashi's can be present without raised antibodies.
Initial results:
- Serum ferritin level 30 ug/L [30.0 - 150.0] - Ferritin 15-30ug/L may suggest depletion of iron stores.
- Serum total 25-hydroxy vitamin D level < 13 nmol/L [> 51.0] - Below low reference limit.
Most recent:
- Serum ferritin level 55 ug/L [30.0 - 150.0].
- Serum total 25-hydroxy vitamin D level 78 nmol/L [> 51.0].
Can’t find my B12 results, but I have injections every 12 weeks now. I was prescribed ferrus sulphate 400mg per day and I had high vit D for 6 weeks and I now take 1000iu daily.
But tiredness remains, weight gain still creeping up... no change in symptoms at all.
1000iu vitamin D is likely inadequate. Suggest you try Better You vitamin D mouth spray that includes vitamin K2 mk7. It's 1000iu spray - recommended 3 sprays per day
You need folate tested if not been done....before starting on vitamin B complex
So have you stopped the ferrous sulphate now?
Ferritin still needs improving. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
apjcn.nhri.org.tw/server/in...
With severe Vit D deficiency (which you had with a level of 13nmol/L), supplementing tends to be for life. Once we reach 75nmol/L the recommended maintenance dose is 3,000iu D3 daily. I would increase your dose to this amount for the winter as we can't now make Vit D naturally as there's not enough sun, hopefully this will improve your level. Retest in March.
Once you've reached the recommended level (100-150nmol/L) then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
naturalnews.com/046401_magn...
drjockers.com/best-magnesiu...
Check out the other cofactors too (some of which can be obtained from food).
Don't worry about your B12 result, you're on injections now. If you start to "flag" between injections you may need them more frequently than 12 weekly, you may or may not be able to persuade your GP to do this, but you can always ask on the Pernicious Anaemia Society forum for further advice on B12:
Thank you. I did stop the iron tablets but will start them again. I’m vegan so can’t eat the liver and black pudding haha. But do eat an iron-rich diet. I’ll keep up with the tablets and increase the vit D. I’ll see how I get in with GP but it sounds as though I might be best just getting all the tests I need privately if need be. Thanks so much for all the advice ☺️
Be aware that many so-called vegetable source of iron contain phytic acid that makes it impossible to absorb the iron (eg spinach). I eat loads of allegedly high iron veggie foods and cook in iron pans but my ferritin is always rock bottom.
Before blood tests and levothyroxine were introduced we were diagnosed upon our clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones) - this has now been removed from being prescribe, despite it being successful for many hypothyroid patients. That was the period when doctors knew clinical symptoms - now they only seem to look at a TSH result - in other countries if it goes above 3+ the person will be diagnosed as hypo. I have no idea who plucked 10 out of the air in the UK to determine whether or not the patient has hypothyroidism.
thyroiduk.org.uk/tuk/about_...
Yeah, my symptoms are just getting worse, so I’m now trying to get all the evidence I can from the tests to try and get something done. From what I’ve read and what people have said on this post, there’s definitely something not right. I just need to understand it a bit more now to fight my corner! Crazy how it’s so different everywhere.
Push GP to retest thyroid and make sure to do test as early as possible in morning and before eating or drinking anything other than water
This gives highest TSH
Thanks for all your advice - I really appreciate it. I’ve got everything written down ready for my appointment! X
You will have to get full Thyroid antibodies testing privately. Most likely also TSH, FT4 and FT3 too
This is a link of things which may interfere with the uptake of hormones.
May be 10 was the number they could now count up to?! Naughty but I couldn’t resist it!
Seriously though I sometimes wonder where the ideas come from! Thankfully I was first treated with NDT and never tested! I’m still here to tell the tale but I’m trying to get back to that! Sadly that doctor was pushed out of the practice!
I have a vague memory from when i was doing my own research a couple of years ago that it was judged it was safe to leave someone who was ASYMPTOMATIC untreated until they reached 10, then they needed treating symptoms or not.
a) cant imagine anyone being asymptomatic at 10!!!
b) someone seems to have played fast and loose with implementing the recommendation in some areas and decided everyone can wait til 10 🤯
I was lucky, I got diagnosed and treated at 6.5 by a GP that had a clue
Hi Sarah I was diagnosed subliminal end of March after not recovering from Shingles virus. I was started on 25mcg on a single test ‘routine’ telephone appt. My thyroid quickly died altogether. But No one knew that and they titrated me up very slowly 25mcg, waiting 8 weeks for blood test then 2-3 wks to book blood test = 10-11 wks at a time and I got very ill and inflamed thyroid and all my glands up still. Possibly reaction to meds. Thyroid could have been dying anyway but I wish I could go back now knowing what I have learnt on this wonderful caring site about the profound effect of optimising ( not just normal) all your vitamins and following gluten and diary free diet. Dont get a multi vitamin, get advise. Eliminating tea and coffee. Believe you me that might sound hard but this little tablet is far from the answer that was promised. I have learnt that my arrogant GP becomes derogatory and dismissive, like many others have suffered on here, when the cure doesnt work so well. I bet your antibodies are raised you need to get your full bloods including Thyroid panel done yourself. If not far enough advanced try nutritious food path but if already failing going without meds is harmful too so post again on here when you have your results. Wishing you good health x
Gosh, I’m sorry things didn’t get picked up quicker for you - it does seem to be a bit of battle to get anything. Thank you for replying. I’m currently vegan and also cut out tea/coffee - in the hope of getting my energy back up and reducing the headaches. It’s not worked, but at least I can say my diet and lifestyle is pretty healthy now! Wishing you good health too x
How long have you been vegan
Vegan diet can be low in iodine
markvanderpump.co.uk/blog/p...
But you must completely rule out autoimmune thyroid disease (Hashimoto's) before considering even testing iodine
thyroidpharmacist.com/artic...
Been vegan 9 years and veggie for 25 years before that... these symptoms started about 3 years ago.
So presumably you always took B12 supplements and regularly tested iron levels for last 25 years ?
It's much harder to maintain optimal iron on plant based diet
I first requested B12 and iron test when I’d been vegan a year (about 8 years ago), and it was fine... had it checked every 18 months or so since and never an issue up u TIL 3 years ago. So don’t think it’s related?
as a vegetarian you would always need to regularly supplement B12
vegansociety.com/resources/...
Obviously anyone with suspicion of thyroid problem should avoid all soya as soya badly affects thyroid hormones
A lot of plant-based foods are fortified with B12, so as long as you’re getting enough you don’t need a supplement as well. My levels were fine for years. But yes I knew about soya so have avoided that for the last 12 months - thank you 😊
It can take that long to run out of B12 and often ferritin just falls gradually and GP won't flag it up until it falls out of the bottom of the normal range is way below what it needs to be. My B12 was fine for several years of being vegan, then I started to get neurological symptoms. It may well be related.
Thank you Sarah, I’m Gluten, Diary, Lactose free and low carb. No tea or coffee. Also an array of wonderful vitamins suggested on here. I never thought I could be so strict with myself but I am and feel less stiff and more energy and feel like I’ve turned a corner 🤞 x
P.s and I drink ginger, cumin and lemon - quite nice
You might also need to test zinc levels if not been supplementing zinc
You might find this website of use in connection with iron :
Just a note on nutrient levels being tested and being told that your level is "fine"...
Using ferritin (iron stores) as an example, imagine three people (A, B and C) getting it tested with a test that has a reference range of 13 - 150 mcg/L :
A has a result of 15
B has a result of 85
C has a result of 148
All the results are within range and all these results would be classified as "fine" or "normal" by doctors. But the likelihood is that person B would feel best because a ferritin level of approximately mid-range has been found to be optimal by many patients, and person A would feel worst.
The reference ranges for nutrients are vast. The medical profession doesn't care that they shoehorn bed-ridden 90-year-olds who've had three heart attacks into the same reference range as a 30 year old who is fairly healthy. If both have a ferritin result of 13 (for example) the 90-year-old and the 30-year-old are still both considered to be "fine" with respect to their iron.
This is why the members of this forum are so suspicious of results that are declared to be "fine" or "normal" by doctors. These words just describe being in range - anywhere in the range. And for some measures doctors think being under the range is fine too. For example a level of 5 or 8 or 10 for ferritin has been declared to be "fine" by doctors before (based on posts on this forum).
I've read that the lower level for the reference range for vitamin D was determined by whether or not people got rickets, not whether they were actually fully healthy.
I've also read that the reference range for vitamin B12 was determined by measuring B12 levels in the blood of seven people with pernicious anaemia.
Source for the info on B12 :
drmalcolmkendrick.org/2017/...
My view. I do not think the RDAs for vitamins are remotely accurate, or useful. They were established in times of absolute deficiency. The agreed Vitamin B12 levels, for example, were based on seven people, over sixty years ago, and remain unchanged to this day. All seven had pernicious anaemia (caused by vitamin B12 deficiency).
I was put on 25mcg when my TSH was 4.64 (if I remember correctly) and diagnosed as sub clinical hypothyroid. 2 years later and I’m now on 125mcg Levo. I was treated on my symptoms at the time and the fact that I am type 2 diabetic. Also, my late mum and my brother had a hypothyroidism diagnosis. My brother at 19! He gained 3st in 3 weeks and his cholesterol went to over 10! Apparently, his thyroid had just stop working. This was 25 years ago.
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