Hi and thanks for reading in advance. I’ve recently had bloods done after a small increase in Levo and I’m not understanding why they are more raised since the increase.
I have had a few things all going on at the same time for the last 2.5 years, menopause, vit D deficiency(now in range), B12 deficient (6 x loading doses received 8 wks ago). My thyroid issues got left behind due to the other stuff going on and it being difficult to unpick k which symptom was for what. . Long story short, HRT is now stable and I asked the dr if the remaining symptoms could be down to my thyroid? I was previously on 25mcg Levo alternate days as I was really unwell (so it seemed) when started initially on 50mcg daily. So I had an increase to 25mcg daily and then 3 mths later a further increase of 25 alternate days with a 50mcg the other alternate day, this was around 9 wks ago. Can someone help me work out why my results are going in the wrong direction even though I’ve had a small increase please?
Also to note I wasn’t aware I needed to not take levo before bloods. I took 25mcg levo at 11pm last night and had bloods done at 9am today. I’ve always done this and it hasn’t sent my results in the opposite direction after an increase previously.
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I think it just show your thyroid is struggling more and you clearly need another increase. This isn't uncommon as your thyroid declines you need more.Also next time take your whole dose levothyroxine the day before in the morning. This will give a more accurate test result. Obviously take nothing before your test, fasting with water only till afterwards. Take your usually levothyroxine afterwards and resume your evening dose. Hope that helps
As yet and even with increases you're still only on a low starting dose and likely nowhere near where your end dose will be. In the early stages of treating hypo many changes happen in the body and its not uncommon for TSH to change.
Taking Levo sooner than 24hrs before a test will affect only the FT4 and yours is so low anyway not to worry this time.
Your FT4 has gone up slightly from June to August so you are headed in the right direction and you are ready for a full 25mcg dose increase unless you are going slowly for other reasons?
Have you had any of your other vitamins checked other than B12?
at bedtime works well for them.
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...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Have you managed to get your thyroid antibodies tested yet? The NHS only test one type - TPO but privately there is a different type - Tg (Thyroglobulin). You would need to buy a private blood test to see the last one.
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.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
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 and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.
Thank you everyone for replying, this is really appreciated.
I literally have to fight for tests and if I can’t get in with a certain GP they say my results are ‘in range’. I have to take my levo when I go to bed otherwise I am ridiculously dizzy (unless this was because at the time I had too much other stuff going on). I take this a few hours after any caffeine and at least 4 hours after food. It is specified on my script that I have Teva brand of levo.
I had my thyroid antibodies tested a couple of years ago and this result is slightly raised (see attached).
I have added copies of the only other vitamins I’ve had tested since the start of this process.
I keep asking to have my levo dose increased as I don’t feel right (although I am better than what I was). I only know about the N12 deficiency as I asked for it to be tested.
Interestingly enough my vitamin D levels shown in the attached pic have only gone up by an increment of 7 in almost a year, even though I take 8000 iud vit D with K2 daily. My B12 has only reduced to below the range level since end of the year last year and I’m not sure why this is, it had stayed level for the 2 years prior.
I’m sure the drs are fed up of me requesting tests but it’s such an uphill battle with everything else that has been going on. I feel like my thyroid journey is only just starting as it’s taken so long to get my menopause symptoms and HRT / testosterone settled so everything thyroid related has been in the background. My joint pain and energy levels still feel quite significant considering and it does affect my day to day living. A desk job also doesn’t help! Thanks so much, I do appreciate you all reading and your advice!
I think most members here can identify with making progress being an uphill battle. Sad but true.
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. Find the most helpful, open minded GP at the practice.vTake 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. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.
Your vitamin D is now looking pretty good. Optimal range is 100-150 so you're very close to that.
Have you been tested for pernicious anaemia? If not then I'd try and get that done although no one test is conclucive. You could head oer to the PA forum here on HealthUnlocked to get more help there.
Have you been tested for coeliac? With several deficiencies its as well to check that.
Once you've done that test then I'd recommend you trial a strictly gluten free diet. 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. Dairy caused me no end of joint pain. These are intolerances and will not show up on any blood test.
Your folate is low in range and should be at the top of that range. Folate is a co factor for B12 so very important. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). The B complex helps keep all the B's in balance. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc It might also be an idea to get a full iron panel if possible.
I'll just tag waveylines nd tattybogle so they know you have replied.
Thank you Jaydee1507 for replying and tagging in waveylines and tattybogle I’m just learning how this site works
Thank you again for the advice, I will read through it all. I have been tested for PA and the test was negative. Yes to being tested for coeliac too, I believe that was ok too. The last GP I saw said I didn’t have hashi’s and we’re saying my crp levels were raised as I’d have tonsillitis 3 wks prior but every time I have crp or esr levels tested they are always higher than they should be. I did check with GP about my iron levels etc and if I needed to take any further supplements and I was told it to, so I will definitely look in to that. They did think I was lactose intolerant at one point but apparently I was progesterone intolerant which gave the same symptoms. Within 2 wks of stopping the progesterone, my symptoms disappeared. I feel like my diet is pretty good with those food groups so that’s a tad confusing. I think I will get some private bloods done if the GP won’t, do they accept the results/recommendations from private tests so you know?
Blown away by the value in these responses! I’ve not felt like I’ve been able to fight my corner at all until recently, the anxiety levels and low mood of which I’d (very lucky I know) never experienced before took over. This is greatly appreciated thank you
I feel like my diet is pretty good with those food groups so that’s a tad confusing.
Are you vegan or vegetarian? It's just worse for those two dietary groups but even carnivores suffer low vitamin levels due to the low stomach acid that being hypo causes. You just cannot absorb the vitamins from the food you eat as well as previously, even with a great whole food diet. Most members here have to supplement continuously to maintain optimal levels.
I think I will get some private bloods done if the GP won’t, do they accept the results/recommendations from private tests so you know?
They are more likely to accept the results from Monitor My Health which is an NHS lab. The other companies not so much, but if you turn up something interesting then you can show the results to your GP and they will likely run their own tests to prove the point. Most members here buy their own supplements to keep their levels up.
July 2021 ~ TPOab ~Thyroid Peroxidase antibodies 65 [0-9]
raised TPOab are diagnostic of autoimmune thyroid disease.
So your GP is splitting hairs ~strictly speaking it's only "Hashimoto's" if you had an enlarged thyroid (goitre) ... the other equally common forms of Autoimmune hypothyroidism don't have a goitre, eg Ord's disease, (older term , not in common use , sometimes called Atrophic Autoimmune Thyroiditis).
NHS GP's often won't use the term hashimoto's , and will commonly refer to all of them lumped together as "Autoimmune Hypothyroidism"
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Thank you SlowDragon for your responses, this is amazing. I will have a good read through all of this and as per my reply to Jaydee1507 i can’t thank you enough in taking the time to reply. I might ask for a retest for coeliac as I am having numerous (what I would consider) gut health problems. I did think perhaps it was the vit D and k2 I was taking (k2 is mk4).
I do think I need a much higher dose of levo, my weight has significantly increased and I’ve put on 5stone in the last 1.5years. Currently 5’11 and ~18 stone. I think some of my symptoms are crossing over as I am due another B12 Jab in 3wks, they’re every 12 wks, GP won’t do them with any shorter timescale .
I will take a look at the links and definitely quote NICE guidelines to GP for sure. I can’t tell you how much lighter I feel reading all of this. I feel like I can definitely be on the way to understanding those disease more. It’s so complex isn’t it
Your B12 is abismally low and there is no way your GP should be leaving this. At this level you will need B12 injections unless it's due to diet (ie Vegan or Vegetarian) . The Intrinsic Factor test (for PA) only picks up 50% of PA. Having a negative test does not mean you don't have it. Your GP should be checking your Homeostane level and your MMA level too. It would be worth filling in the assessment form on B12d. org.
You must feel really poorly. Poor u. Your GP should not hesitate to implement B12 injections especially if you have neurological symptoms eg numbness, tingling, tremors, feeling weak, sense of robotic walking ie not quite coordinated, blurred or double vision, there maybe others... Your GP should start you on alternate day b12 injections until your symptoms go. It's important treatment starts ASAP to avoid permenant damage. Along side the B12 jabs it's a good idea to take a basic B complex with folate like Thorne's Basic B. This is because the vitamin b's work best together.. Please be aware that GPs do not receive any training in vitamins and minerals (It was dropped from their syllabus 7 or 8 years ago.) so they are likely to be clueless. Refer then to Nice guidelines for B12 deficiency treatment.
The increase in Levo dose is reflected in the higher fT4 result . (Levo is synthetic T4)
however your body says it still wants more .. and this is reflected by the TSH going higher ~ TSH (Thyroid Stimulating Hormone) is a message from the pituitary gland to the thyroid asking it to make more thyroid hormone( T4/T3) . When it senses the thyroid hormone levels levels are too low , the TSH level rises. Once we are taking synthetic Levo , a higher TSH becomes a message to the GP to raise the dose.
If you still have symptoms of hypothyroidism , ask GP for another increase in levo. Use these references to support your request , All recommend GP's keep TSH below 2/2.5 ish in all patients on levo . Some were taken directly from GP 'update ' sources , one was written specifically for GP's by Specialist Registrars in Endocrinology and Cardiology .. so there should be no argument about their validity:
So Ft4 is falsely high if you took levothyroxine only 8 hours before test
When adequately treated most people will have Ft4 at least 60-70% through range…..and important to test with last dose levothyroxine 24 hours before test
Standard STARTER dose levothyroxine is 50mcg
You had to start lower
Your results show you are now ready to increase to 50mcg per day
Retest again in another 6-8 weeks
Likely to need several further increases in dose over next year
Normally dose is increased in 25mcg steps …..but some people have to increase in smaller 12.5mcg steps
Approximately how much do you weigh?
Guidelines on eventual dose levothyroxine you might need is approximately 1.6mcg levothyroxine per kilo of your weight per day…..so unless very petite….likely to be on at least 100mcg levothyroxine per day
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Are you lactose or dairy intolerant that you are on Teva?
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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
If it was the progesterone causing symptoms of lactose intolerance, maybe a change in brand could help you tolerate Levothyroxine better. Teva seems to upset many people because it contains mannitol. If you are lactose intolerant perhaps you could try Aristo brand (Vencamil). I think they only come in 100 mcg at the moment but you could halve them to get your 50 mcg dose. It’s worth a try.
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