On the advice of greygoose who has said that my B12 is dangerously low despite being in the "normal" range, I'm posting to ask how I should be supplementing and what brands of supplements people recommend.
This is on the basis that whilst my energy levels are slightly improved on the levo, my neurological symptoms are not. My memory, attention span, concentration and language abilities continue to decline along with continuing to suffer from peripheral neuropathy.
Vitamin levels are low because you are still very hypothyroid
How old are you
Standard starter dose levothyroxine is 50mcg unless over 65 years old
which brand of levothyroxine was 25mcg
Which brand is 50mcg
Retest thyroid levels in another 6-8 weeks
Likely to need further increases in levothyroxine over coming months
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
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
Many people can’t tolerate starting at full dose…..but dose will still need increasing slowly upwards over 6-18months until eventually on 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.
I'm 51 and weigh about 85kg. The blood test was done at 8am having only had water and not taking any levo for 24 hours. The 25mcg brand is Teva and the 50mcg is Accord.
I honestly don't understand why I was started on only 25mcg unless it was because my TSH was only just above the "normal range". The other GP I saw at the practice refused to even consider that I might be hypothyroid so I felt that I'd had at least some success getting a diagnosis and *any* thyroxine at all.
The GP only gave me four weeks supply of 50mg and then told me to come back in 5 or 6 weeks after having another blood test. I'm utterly confused to be honest and I really don't know what to do. It's so hard navigating this with not enough knowledge and a brain that is not working properly.
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an 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 perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
With a B12 level that low you should be showing it to your GP and unless you are vegetarian or vegan then you need tests for pernicious anaemia. Come back to us here or even the PA forum here on HealthUnlocked if your GP isn't helpful.
Diagnosis of anaemia caused by vitamin B12 or folate deficiency should be made through history, examination, and investigations, including taking a full blood count, blood film, and measuring serum concentrations of cobalamin and folate.
If vitamin B12 deficiency is found, serum anti-intrinsic factor antibodies should be checked.
If there are strong clinical features of B12 deficiency such as megaloblastic anaemia or subacute combined degeneration of the cord, despite a normal serum vitamin B12 level, serum anti-intrinsic factor antibodies should also be checked.
Your ferritin is terribly low. NICE guidelines state that a ferritin of 30 or less is deficient so again, show results to GP and insist on iron supplements.
Ask GP to test you for coeliac disease.
Do try and find a more helpful GP at your practice than you saw this morning. You may need to lead the conversation to where you want it to go. Do a bit of homework before your appointment, be firm and don't back down about what you want done.
CFS is a diagnosis of exclusion so they need to start doing some tests and treating your vitamin deficiencies.
Your folate is too low but wait until you start a B12 supplement to do anything about that.
Not vegetarian or vegan. These tests were all commissioned by the GP who told me that they were "fine" when I saw him this morning because they were "all in range" and if I wanted to take supplements it was up to me and I should just go to Holland and Barratt and no he couldn't help me with what I needed to do😕
You said that he's new to the prctice, also he may just not be a generally helpful type of GP. I'd go back to a different one with the NICE guidelines and try again.
I think it’s terrible how they are with us ,I’ve had the same as you with gps saying you can buy them yourself and not really being that interested in any of it , i hope you can get yourself sorted and will feel better in the future
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
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
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
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
With the B12 test result the GP said it was normal and in range and he couldn't prescribe anything for it or do further tests because of it being in range. He told me just to go to Holland and Barratt.
Re the B12 deficiency symptoms, I did the scoring list on that website and ended up with all categories scoring over 5, many of them scoring 9 or 10. Everything from neuropathy to vision problems, low libido to constant headaches, as well as the mental cognition issues.
I'm an academic, my brain is my life and livelihood and I cannot carry on working when I am unable to think straight or concentrate enough to even read a fiction book. I'm just living with horrendous symptoms and all the GP can say is that its "probably fibromyalgia or CFS" rather than seeing what's actually in front of him that I have low B12.
I'm not vegan/vegetarian
Thankyou for all this information, I really appreciate you taking the time to explain this.
I've just read the guidelines on low B12 and folate and it says it can be triggered by Giardiasis infection. I had this infection 7 years ago and it left me lactose intolerant, I'm wondering if it's also left me with low B12.
Keep going. All the advice here will help you regain your strength and focus. You need to become your own best advocate. Don’t take any old s**t from doctors. Pretend you’re going in on behalf of someone who is dear to you.
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.
retest full iron panel 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
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. ‘
You need coeliac blood test too if not already on strictly gluten free diet
Just noticed your age and wondering if any of your symptoms are also peri/menopausal at all.
This doesn’t address low B12 or thyroid problems of course.
I have pernicious anaemia (PA) with negative intrinsic factor (that is a thing) although they usually test for this not everyone has to have positive test results to have condition. I also have coeliac disease and hypothyroidism/Hashimoto’s with family history of PA.
Ask your GP if you can be considered for B12 injections or a good supplement if you don’t meet their criteria … you can of course supplement yourself methyl types of B vitamins, these are superior in my opinion, more bioavailable, as we absorb these more readily, other synthetic forms require us to convert or be able to use them to some degree and isn’t often best way to get these vitamins in most with digestive issues.
My elderly mum is actually very deficient in B12 and fighting a battle with her GP as he won’t do a jot until spoken to cardiologist which is why she’s left waiting months it’s appalling situation her level is 148 the minimum it should be is 197 on her test. They’ve taken another test so hopefully after 2 readings he’ll get a backbone and prescribe as cardiologists should have to do his job too!
Re menopause…If you go on the Balance App or website follow Dr Louise Newson - the menopause Dr. (specialist) you can fill in the symptom form, and presents this to your GP they should have at least one member of staff trained to deal with menopause problems just ask at reception of your surgery if they can you point me in right direction to best person to deal with menopause, maybe most Drs or specialists nurse there can deal with it.
It doesn’t matter if you are post menopausal pre or peri these issues can be resolved by having hormones replacement therapy. Likewise hypothyroidism has thyroxine if there’s a deficiency in hormones sometimes one thing starts another if you aren’t getting enough. It can be a minefield where to start but lots of random symptoms are disregarded but can be menopause and can be easily addressed likewise B12 there’s sprays and tablets if no luck with GP. Are you taking any medication that can reduce your B12 maybe put that to your Dr especially if you can see previous blood results and it’s declining, it’s not going to be just a random problem it’s going to decline more, so ask for your B12 to be monitored going forward… obviously if you supplement your levels will get better (hopefully) but this then won’t prove situation to your GP.
I’d be sticking out for B12 injections if you can prove that meds/conditions or generally your levels are declining… injections are superior to oral medications but you can achieve same results but will take a while.
Hi CoeliacMum, I am already prescribed the Evoral 100 HRT patch (estradiol) and I also have a Mirena IUS for progesterone. I was originally put on Utrogeston in 2021 and I had migraines every day for the two week period I had to take it, so I had a Mirena put in instead.
The HRT solved a few of the problems I thought were hormonal (enormous anger and rage, irritability, hot sweats and night sweats) but hasn't touched any of the issues which are now likely to be related to thyroid or vitamin/mineral deficiencies (tiredness, brain fog, pain, visual problems etc)
I am in a forum for HRT on Facebook which I've found quite helpful, but I don't think that my problems are all to do with estrogen deficiency.
No Oestrogen deficiency isn’t my issue either and most people think oestrogen is always the answer…it’s progesterone with me and it’s getting that balance right.
Glad that’s one thing ticked off anyhow… guess it’s addressing others then if you don’t need a review re hrt.
These are helpful links for you to understand b12 deficiency. They are great because they are concise and include medical footnotes. If you have an absorption issue due to PA or another reason it is supplementation for life. Not 'Oh normal range not needed anymore' like a regular lab result. Do not expect any doctor to fully understand it all & that includes specialists. If they do, wonderful but do not expect them to know.
Supplements only work if it is what your body needs and they are balanced. That being said here in the U.S.A. Dysfunctional Main Stream Medicine are not fond of lab tests for vitamins/minerals and they are massively expensive to boot. My suggestion know the symptoms of deficiencies look them up and keep a little note book of them , so when you have any symptom you know where to start in fixing yourself. Doctors do "dysfunction tests" which are not necessarily accurate and then write a prescription . When you have a symptom you need to know WHY , so you can make the needed corrections. Diagnosing is what is missing in healthcare . Example if you are deficient in selenium your body won't being properly absorbing iodine and eventually your thyroid won't function properly . You may just need "selenium " ! It is a lot like if your car runs out of gas it won't run and it is not a sign you need to replace the car, just get gas or conversely if you have a hole in the gas tank filling the tank won't solve your problem either! God Bless Us One And All !
It sounds very much like PA/B12 and iron deficiency to me. Best do tests for PA before supplementing.
Head over to the PAS forum for details on testing, post there too. If GP refuses tests that is negligence since you have neuro symptoms. They can be done privately of course, not all are available on NHS.
I was significantly iron deficient with a transferrin saturation % of 18, yours isn't much higher. I had an iron infusion 2 months ago after seeing an iron expert, who is also a B12 deficiency specialist.
Hi saw your post and saw some similarities with my experience. Thought I'd share something that I learnt and put into practice from a CFS sufferer and others on this site. My health was knocked sideways by Covid and a huge cut in my levo, despite my symptoms. My health and energy levels have been vastly improved by looking at what I put into my system and how, esp as menopausal. I also pushed Dr - not an easy task - into doubling my Levo from 50 to 100 where I feel really good. I take this at 3am (to coincide with my morning visit!) so that there are 4 hours either side where there is no conflict with anything else I take.
Apparently the ability of your system to absorb some things can go down as you age and that can be exacerbated by being hypothyroid. I found that I wasn't absorbing vital energy vitamins (B12 and Folate) and now take drops under the tongue. I also take liquid Vit D (prescribed) which had a huge impact on my mental health such that I no longer take anything to support it. That and reducing the amount of carbs I eat (a lot) has lead to increased energy and brain power, I'm loving the fats and also losing weight. My peripheral neuropathy has greatly reduced too.
I was so enthused that I got my father to do the same and his mental ability has improved vastly at 89 - I'm 62. (Sadly he has a muscle wasting disease). Everyone is different and we each have a different journey but do look at the carbs - I was 86Kg and am now 76.5 and it is dripping off with no effort!! Oh yes, also getting into fermented foods to help stomach and gut biome, and now make Kefir every day which I love. Best of luck with your journey.
I would be feeling very poorly with B12 that low. I cannot absorb supplements at all. They just pool in my blood going no where. Because of neurological damage I self inject B12 every other day. Also folate is far to low as we need folate for the uptake of B12. Folate needs to be optimal top of range. I have to take high dose folate. Can you ask your doctor for a trail dose of B12 injections because of your low reading and neurological damage? Hope you get it all sorted Snufkin.
Thankyou so much Katherine, you don't know how much I appreciate the help and support I'm getting from people like you and others on the forum. I'm seeing the GP on Wednesday next week so will try and get them to agree to look properly at B12 and folate and at least do a trial.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help with supplement timings please
Please help to interpret test results and recommend supplements
Help with additional test results please
Latest blood results. Help please
Help with supplements
