I'm new to this community. At my wits end. I have B12 levels of 397 (480 in 2016), Hashimoto thyroiditis, Reynauds, and on synthroid and estrace. Also diagnosed with low platelets and low calcium. I have tingling and numbnesss in hands and feet and now arms. Itchy back (dermatologist said it's nerve related no rash) for several years. Sometimes get nose bleeds, had dry mouth, burning tongue and fatigue on and off. Hair loss, brittle nails and dry skin. I've also had little red rashes and sometimes bruise easily and cuts take a while to heal. A year ago, I started having a bit of urinary incontinence which is Scary. Had a hysterctomy 4 years ago which I thought might be cause but urologist said no and gave me meds which I didn't take
My family doctor says that I'm within the "normal" b12 Levels. She also conducted a neurological assessment and says I'm fine. I have suffered from vertigo, my eye sight gets a bit fuzzy and have floaters every so often. Feel confused sometimes although could be because I'm stressed by this. Mid 50s and otherwise healthy. All my blood work has ruled out inflammation or cancer, no diabetes, no lupus. So I have this neuropathy and I'm very worried because I feel I'm not being heard. She wouldn't do other tests and had to beg her to do vitamin tests. when I told her my b12 levels would be considered low in Japan she dismissed and said that equipment could be different and in canada it's different. I would appreciate your advice. Worried about permanent damage and think B12 shots might help.
my B12 was 480 last year and it is 397 as of last week, and i have some very clear symptoms namely tingling in my hands/feet and arms that is constant, plus itchy skin, etc. Classic neuropathy symptoms. I have read that on Mayo Clinic site that patients with B12 levels between 150 and 400 ng/L are considered borderline and should be evaluated further by functional tests for Vit B12 deficiency and further testing of MMA levels. Plus my platelet count has been as low as 129 and has been steadily decreasing. Thanks
But I wonder if this is all caused by Hashimoto which I have. My TSH is 3.07, T4 free 16 and T3 free 3.6. I just spoke with my Family Doctor and she said my thyroid condition has nothing to do with my current symptoms. That my thyroid is fine and will not refer me to an endocrinologist I'm on synthroid .088 mg. I don't think it's enough. My doctor dismissed me today when I said I wanted to see an endocrinologist. She said that because I already have hashimoto, there's not much an endocrinologist would do differently.
Would welcome your thoughts or advice.
Thank you
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Aprilinparis
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First we have to read, learn, ask questions (as you're doing) as you find out that doctors/endocrinologists aren't always the most knowledgable about dysfunctions of the thyroid gland or that it is most important as it controls all our metabolism from head to toe. If thyroid hormones are out of kilter nothing works properly and we can struggle.
First, all results should have the ranges alongside (labs differ in their machines and it is important to comment).
Your TSH is too high - recommendation is 1 or lower.
B12 has to be nearer 1,000 in order to try to prevent neurological problems, especially dementia. Supplement with B12 sublingual methylcobalamin tablets. You can source these from Amazon and if you use the TUK link they get a very small sum which helps the charity (Thyroiduk.org.uk).
B12, Vit D, iron, ferritin and folate all have to be optimal.
As I don't know the ranges of your T3 and T4 -both have to be towards the top of the range but the most important are Free T4 and Free T3 and I'll give you a link. To increase these you need more thyroid hormones and both results have to be towards the upper part of the range.
Thyroid antibodies can be reduced by going Gluten Free as it is the antibodies which wax and wane while attacking your Thyroid Gland and you are becoming hypothyroid but treatment is the same.
All vitamins/minerals have to be optimal but particularly B12 and Vit D as these are prohormones.
There is also a Pernicious Anaemia Society on Healthunlocked who will give recommendations re B12.
What we need is thyroid hormone replacement which reduces our TSH to 1 or lower and some need it to be suppressed and NO we will not get a heart attack or osteo.
In these modern days Endocrinologists/doctors are poorly trained in how to bring relief of clinical symptoms (they know none) to the patient.
Always get a print-out of your results with the ranges. Ranges are important as labs differ.
Thanks Shaws. Those are great insights. I actually do have ranges, which I should have added. And I also request my lab results and have print outs. I learned to do this when my Iron levels were very low a few years ago. 12 to be exact.
Wow, 1,000 is well above what my results show, I suspected anemia but the thyroid is such a key organ and I wondered if all of this is interelated
TSH ranges here ( I live in Canada) are 0.35 - 5 (mine is 3.07). Free T4 ranges are 12-22 (i'm 16) and free T3 ranges are 2.6 - 5.7 (i'm 3.6). My Family Doctor and she said my thyroid condition has nothing to do with my current symptoms.
I actually joined Pernicious Anaemia Society on health unlocked first and they suggested I join the thyroid site as well. I've just asked for. Mma and homocysteine tests and waiting results.
I'm seeing my naturopath next week. She's the one who suspected Hashimoto.
This is a previous post and about 4 minutes in and the gentleman in question was a paediatrician (I believe) and not one of all the doctors in the hospital not ONE could diagnose what he was suffering from. It begins about 4 mins in. Luckily his medical friend wouldn't give up on him.
That's unfortunate and unbelievable in this day and age. Don't understand this line of thinking from the medical profession. And they don't follow the results to notice a declining trend either.
Hi. I share your frustration. I have Hashimoto thyroiditis and am on no medication. I have an enlarged thyroid gland too. I have to constantly push for blood tests and scans. In fact I'm probably due another soon, but unless I ask it's never offered. I find it very worrying that there is no preventative treatment and I just get 'your thyroid is going to kick and splutter, and you will eventually levothyroxine'. I have tried a very low dose when my tsh went to 10,but couldn't tolerate it. So unfair that we aren't taken seriously and have to push to get anywhere. I've paid to see an endocrinologist, and seen an NHS one. Both had the same view..... Just watch and wait! It's rubbish isn't it! I've recently had a hysterectomy and am so irritable and achey. Maybe it's thyroid related?
So sorry that you're not in medication BBBOA, although I'm on such a low dosage I wonder if it's even working. Also sorry about your hysterctomy, I can certainly relate.
Hope you are able to get treatment. I'm seeing a naturopathic doctor alongside my medical one to be vigilant
Thanks for your reply. I would be very careful with any supplements as some can cause liver damage. I'm not sure what the naturopath uses but some of the plant based ones, especially for menopaus are soy based which aren't good for thyroiditis I believe? Black cocash? Can cause liver damage??? A nightmare looking for natural solutions and then reading that they can be really bad for you!
If you have hashimoto's you should be on levothyroxine. email louise.roberts@thyroiduk.org.uk who has a Pulse Online article (doctors magazine) and Dr Toft, ex President of the BTA states that if antibodies are present, we should be prescribed levothyroxine to 'nip things in the bud'.
Thanks bluepetals. I actually requested both tests and am waiting for the results. But my doctor didn't suggest and when I asked her, she said well you know that ohip, our government health care doesn't cover. I told her I did not care about cost and that my health was more important.
I stopped gluten for a while, but to be 100% sure, I'm going to get tested and have been told to re-introduce gluten before I'm tested so as to get proper results. It's been a couple of weeks that I'm on gluten again and i must say that I don't feel so great.
Not sure how long i need to be on gluten again before I can get tested.
I will definitely look into the collagen powder. I am on a probiotic
I struggled to get my b12 levels above 500, but once I got there it started to get a bit easier. Having Hashimoto's is like getting an old car running nicely on a winter's day.. very slow to get started and putting the foot hard on the accelerator from a standing start gets you nowhere.
To control antibody levels it's definitely worth going gluten free and reducing dairy significantly (it's worth experimenting as some of us find casein in milk to be the problem while for others it's lactose or both). You most definitely would have low stomach acid with your not-properly-treated thyroid. Taking Betaine HCl with meals could help you a lot. All of your symptoms certainly suggest very poor nutrient absorption. The b12 molecule is huge, which is why it's a particularly tricky one for us. Other hard to absorb vitamins / minerals include folic acid, B6, magnesium, iron and selenium. There are also some very good enzyme combinations that support the liver / pancreas which are organs that are often working too laboriously in those of us with low thyroid hormone.
As Shaws said, sublingual Methylcobalamin not cyanocobalamin is the best one for self-treating a b12 deficiency. The vitamin b12 also requires folate levels to be good. I take a (rather pricey) B-complex that has methylfolate and P-5-P which are the best absorbed forms of folic acid and b6 - they work together to help with circulation and neurological (tingling) symptoms and support the adrenals too which can be struggling with a poorly treated thyroid. Magnesium levels also need to be reasonable to work with your B-vits. Taking selenium (with meals) can help with hair / nails and skin issues too. I also recommend 1,000 iu capsules of vitamin d (maintenance dose - take more if your levels are 60 or below) cod-liver oil or even better Sea Buckthorn (which includes omega 7 - absolutely brilliant for dry mouth) for vitamin A and Omegas - either fish oils or Linseed especially if you have very dry skin and joint issues.
Thanks HLAB35. What great ideas. And so encouraging to hear.
Right now I am really worried about the incontinence issue. It's really scary to know that I might have bladder issues because of this. I'm only in my 50s. I hope that if I get my b12 up to ideal levels and combat the nutrition absorption issue, that my bladder will turn around. I also have an itchy back. I just hope there's no permanent nerve damage and my overactive bladder goes back to Normal
Hoping that my incontinence is linked to Hashimoto and B12 deficiency so that i can get it treated properly. This symptom is one of my major concerns at the moment.
I don't think doctors really know that low vitamins/minerals results in health issues. B12 and Vit D for instance are Pro-hormones and have to be optimum - not somewhere in the range.
Supplement with B12 methylcobalamin until yours is around 1,000.The aim for a TSH is 1 or lower. Not somewhere in the range.
I had a frustrating visit with an internist my family doctor sent me too because of all my symptoms.
He said TSH is the gold standard marker for Hashimoto and not free T3 or T4. He said my TSH was just fine and would not refer me to endocronlogist or increase my dose.
He said my B12 is normal. I did tests for MMA & holcysteine and they also came back within range.
To remind you,
Folate RBC: 2683 in 2016 (range >1200 nmol/L) in 2012 it was 2599
B12 in 2012: 820 and in 2016: 480 and in June 2017: 397
Vit D in 2017: 25 HYDROXY VITAMIN D 113 nmol/L (76 -250 range)
TSH: oct 2015 - 10.64 (0.35- 5.00 miU/L); July 2012 - 3.56; sept 2016 - 2.73 and June 2017 - 3.07
TPO Antibodies > 1000 (2015)
Methylmalonic - 153nmol/l (0-378)
Homocysteine- 7 urologist/L (5-15)
It was the worst experience ever. He will not give me B12 injections and is sending me for nerve assessment with neurologist and cystopic examination with urologist.
On the other hand, I saw my naturopath last friday. She suggested that my doctor increase my levo and decrease my estrace/estrogen causes inflammation.
She thinks my hashimoto is the cause of all inflammation and leaky gut. Likely a virus attacked my thyroid and now she is going to work to get it out. She has put me on gluten/dairy free diet. Also on a few other supplements: B Supreme, Colostrum, Myo Inosito, Selena Excell, Zinc Chelate and Magnesium Bisglycinate.
She also thinks B12 shots are a good route and that I am probably not absorbing nutrients into the tissue because of inflammation. Same for the bladder issue. Likely inflammation of the muscle. Hopefully she is going to try and get my anti TPO levels down.
I do not understand why doctors know so little about Hashimoto. He also would not recommend a rheumatologist. It was the most frustrating visit so far.
Thank goodness for this website. I thought i was going crazy today....
The gold-standard for diagnosing Hashimoto's is if the patient has thyroid antibodies. TSH is not the gold-standard for hashi's. It is for diagnosing someone for hypo/hyper.
They are not all so smart as all the doctors I saw didn't even think of hypo but I got plenty of diagnosis with 'treatment' one under anaesthetic when I had a undiagnosed hypo and TSH of 100.
Regardless of TSH if you have antibodies you have to be treated with levothyroxine. If you email louise.robert@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft (ex President of the BTA) who states that if antibodies are present, to 'nip things in the bud' that levo should be prescribed.
There is a pernicious anaemia forum on this site who may be able to answer re your B12 question. All I know is that it is now recommended that B12 should be around 1,000. B12 can be supplement with sublingual B12 methylcobalamin tablets.
If we have stomach issues, it is usually due to hypo with the resultant low stomach and supplement meals, especially with protein, with Betaine/pepsin or digestive enzymes.
I will state I am not medically qualified but I think the diagnosis/treatment is abhorrent.
Itchy back sounds like a liver and pancreas that are overworked ...this evidence combined with overactive bladder makes me think that your antibody and liver/kidney function and blood sugar levels should definitely be investigated.
I have diabetic markers and there a liver problems in the family, so I certainly get a bit concerned when I start to itch and wee frequently... best to try and avoid sugary cereals / starchy food and consider having a lot more veg and also anti-inflammatory spices like turmeric. Pro-biotic gels for BV may also help as having good 'flora' down below can help urinary tract as well as gynae issues.
Doctors won't treat people in pre-diabetic mode, so don't necessarily believe their 'not diabetic' - when they really mean 'not diabetic just yet'. (I was speechless when I found out my GPs had known I could become diabetic since pregnancy!!!)
My doctor said she thought it was diabetes but the liver and pancreas and glucose testing ruled it out. Although now to your point, I wonder if I'm pre diabetic? Sound like the usual story.
My doctor sent me to a dermatologist who said it could be nerve damage or pinched nerve causing itching.
Urologist told me to take meds and drink less water.
I suspect it could be diabetes but hashimoto also comes into play.
It's too bad the family doctors cannot put this all together. I live in Canada and while our care is universal, I question the quality. Boils down to your individual doctor and patient to piece the links altogether
Hi April, First you have to get that TSH DOWN. The fact is that conventional medicine does not know how to treat Hashimoto's. Chronic illness is a disaster because I now believe the idea is to keep you ill and therefore why should you be cured.
This is all about autoimmune conditions and it may have begun in your stomach lining and then while nutrition depletes you have an abundance of other symptoms. Healing your gut may include avoiding gluten or actually most carbs, possibly dairy and having enough stomach acid to break down minerals which as so very important. I like taking unfiltered vinegar with meals which has made an improvement for me but HCL, Betaine, Pepsin, digestive enzymes are all helpful. If you have to make a choice I would do everything to improve digestion before anything else but increasing your hormone dose is paramount as well. Your body cannot process nutrients and once you can many symptoms will resolve including incontinence in my opinion.
Thanks Heloise. Wise words. I've been reading quite a bit about the importantance of diet and eliminating gluten and dairy. And the fact that intrinsic factor might prevent nutrition absorption. I've asked my doctor several times about my synthroid medication dose but she's adamant that tsh of 3.07 is normal. I agree with you. Most people on this site talk about levels of 1 so will try to see if she will listen. My B12 has been falling steadily over past 4 years so hopefully empirical evidence will show
Heloise is spot on. I like Japanese foods for this reason - lots of fermented foods are good for gut, chicken and fish protein, veg and low carbs (no dairy and gluten containing cereals at all).
There was a glut of cereal crops in North America at the end of the nineteenth century and the medical doctor / religious activist Kellogg came up with the bright idea of changing breakfasts forever... clearly a genius at branding. It's been a win : win for a continent whose major agri businesses include grain and sugar! North American diets have pervaded Europe and now we're normalised to them. An old fashioned Full English Breakfast is becoming a rarity.
As an aside, I read (on Wikipedia) that Kellogg controversially also decided that ALL baby boys in the USA should be circumcised to prevent them from masturbating as teens!
Apparently he made both the religious leaders and other doctors at the sanatorium he opened (no less) very uncomfortable with his outlook that was neither rigorously scientific, nor following the Bible - and that was one hundred years ago. I think that his mixing science with religion was a political bluff, a sleight of hand; when he was just a charismatic, delusional, swaggering bully with a mind for profit, but more importantly power. Wow, this sounds familiar!
Wow, I must know more about this character. There seems to be no end to which men (or women) will go with their senselessness. No wonder the world looks like this.
Low platelets and calcium can give tingling and numbness is extremeties as so does raynauds and vitamin defitiancies. I have raynauds, underactive thyroid, very low platelet count, electrolite imbalances, anorexia nervosa ( weigh 5 stone at 5'4")and cancer. You do seem as though you have been given the all clear for anything more serious. You dont mention anaemia and i do know that pernicious anemia needs vit b 12 and can cause sytoms you say but im not an expert. You do sound worried but i think maybe you might need to calm down a little and approach your doc or get a different one without coming across hypercondriac cos if ur coming out with all this stuff including numbers and possible answers urself they wont take you seriously. I was on the oposite side of the spectrum and refuse to believe i was ill but they dont like it when people go in and say i think this is wrong with me do ur job. Try and calm down just a little to go in with a clear but positive mind set ( even tho you are scared and poorly) and say everything calmly. Write it down if need be what is wrong incase you forget thru nerves etc. And take someone in with you. Doctors are not the best these days but you might just be worrying and making urself worse by presuming the worst. Ask them what you can do to i.e eat better to improve your bloodwork, get less stressed and to get the right help that you deserve. All the best. Michelle
Thanks Michelle for your perspective. I will probably look for a new doctor. I was misdiagnosed by same doctor/clinic a few years ago. They missed major markers for ovarian cancer and had if I had not pushed who knows how things would have gone. I was lucky that a radiologist discovered pre cancer cells because I insisted something was wrong. I've learned to always trust my symptoms and body. it is important to be one's own advocate
That said you are absolutely right in that doctors do not like to be told what to do. However, I've been complaining now for over a year to no avail as symptoms increase. All I ask is that if family physician is not capable of making a diagnosis they need to admit and refer onto a specialist or someone who knows better. Sadly hashimoto is not an auto immune disease which many doctors know about and seem to lump it in with under active thyroid and one size fits all.
I have found trying to fight the system exhausting and upsetting. Your symptoms are shouting low B12 and you need some more levo. I would set about sorting those first and if you still have symptoms start looking at calcuim, liver, iron etc
If you want to go through NHS you might find you are spending more money on frequent GP visits( petrol back and forth) and untimatly unhelpful symptom relief prescriptions as well has having long periods of illness that cost money, than you would if you treated yourself. I now jab myself with Vit B12, access my own thyroid meds and avoid doctors like the plague. I am sure I would have died a few months ago had I relied on doctors and I have since cured myself of dementia.
Thanks MandyJane. I hear you! My symptoms do feel like low B12 and I hope that my MMA and homocysteine markers shed more light on my hunch. Also, you and several others on this great site have suggested higher levo.
The only reason doctor is checking B12 is because i suggested. I begged her to give me B12 shots but she refused. Doubt she will increase my levo so I will either see a new doctor or double my dose.
Sounds like you have taken charge of your health.Kudos to you!!
I Wish you the very best. Your story is inspiring.
April. If you look on NHS choices there is some info about the unreliability of B12 blood tests and that treatment should be given on basis of symptoms. Unlike with thyroid hormones the official info is that B12 blood tests are unreliable so might be worth printing it off and taking to GP.
You will need to have 2 weeks of daily B12 jabs there after you will be offered 3 monthly which is NHS standard. It is often nothing like enough I need one every three weeks or so. Dr Chandys B12 support on line is a good read and they sometimes send out B12 jabs to people as a charity.
Thanks again MandyJane. Is there a website for NHS where I could print off this info?
I've started taking 2000mcg of the sublingual B12 tablets but haven't seen any improvement. However, it's only been a few days. Sounds like I need a heavier dose. I'm in Canada. I will definitely check out DR Chanda's B12 support on line.
Gosh things bad in Canada too. The website is called NHS choices. If I get time later I will try to find and link. Keep at it with sublingual for a bit. With me however it raised the numbers on blood tests but no improvement.I have had a lot of improvement with jabs.You can take as much B12 as you like so maybe up the sublingual to 5,000 a day for a bit.
Hi I know that low calcium can cause those symptoms too and also that calcium should never be taken near the thyroid medication as it will block it. If you do start supplementing B12 do make sure you are taking all the necessary supporting co factors you require as I didn't at first and ended up severely iron deficient .
Thank you for your response and good wishes. I do not take calcium near my thyroid medication but this is good to know. What do you mean by taking all necessary supporting co factors
Sorry, bit of a late reply here, but regarding your incontinence issues I would recommend having a go with Magnesium Malate if you can source it... (my daughter's really keen on it). Magnesium is good generally for anything neurological and muscular - and urinary issues are both! It's the Malic Acid that give these the edge - it's particularly known for relieving fibromyalgia symptoms (which, I'm pleased to say, she no longer has).
Thank you so very much for responding. My biggest worry right now In addition to the tingling and numb feeling in my hands and feet is the incontinence. It feels like my muscles have weakened. I will try magnesium malate. I've been taking magnesium for years, but not magnesium malate. What's the difference?
I think it's the malic acid. Firstly, it helps the Magnesium get absorbed, secondly, it has properties of its own that can help with endurance, reduce aluminium toxicity AND helps make ATP in cells that are low in oxygen. It's a pretty impressive combination.
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