Vitamin Deficiency/Hypothyroidism?

[igotdemons]

I’m at a bit of a loss when it comes to my health just lately so thought I’d ask here if anyone has had similar experiences?

I’ve had a lot of issues over the past 12 months, but getting my GP interested is like trying to walk through treacle! 🙈

Last year I had an MRI which showed I had two herniated discs (F4 & F5). However, they said it wouldn’t be causing me any issues in respect of nerves etc.

Fast forward to this year and recently my feet and lower legs have felt tingly. I spoke to my GP about it and she couldn’t have been less bothered if she tried! Initially I wondered if I could be deficient in B12 as I am Vegetarian and don’t really eat many foods with B12 in them (although I do take a multivitamin) plus I take metformin for PCOS and this can cause issues with B12. After a bit of badgering I had the blood test and according to my GP all my bloods came back ‘normal’.

However, I am loathe to trust this because last year my hair started falling out at the same time my periods returned after weight loss and were very heavy. I queried my iron levels, had a blood test and was told they were ‘normal’. Turns out they were 26 and my dermatologist says they need to be over 70 for good hair growth so I’ve been taking an iron supplement for 6 months, levels still only at 56 now! 😣

I’m also at high risk for hypothyroidism, which I know some GP’s will say your ranges are normal when apparently they are not. Just lately I have been absolutely freezing all the time which is not like me, I am always too warm! My arms ache a lot too when just doing things like holding a book open to read it.

I’m seeing my GP in a fortnight for a neurological exam and in the meantime I am having a private blood test for vitamin deficiencies and thyroid to see what the private doctors opinion is on my results.

So really after all that waffle (apologies!) what I am asking is have any of you been told your bloods were ‘normal’ when they weren’t normal for you and when you corrected them yourselves with supplements etc. they sorted your issues out? I’m getting to the end of my rope as I’ve not felt right for a year now! 😣

Did they test for Vit D?

The multivitamin will skew any B12 test for over 4m. Your GP is unlikely to understand this.
You have neuro symptoms so you urgently need help.
If you join this FB group there are word class experts who will advise you.
www.facebook.com/groups/PAB12DSupportGroup

A very good book is 'Could it be B12 - An epidemic of misdiagnoses' by Sally Patcholok. You can get it on Amazon.

This site is very informative if you follow the links it will tell you most of what you need to know
www.b12deficiency.info/what-to-do-next/

The common denominator with B12d and hypothyroid is low stomach acid so doing this simple test could help you improve digestion, although if you have any eggs, fish, meat or dairy in your diet at least twice a week you are likely to be deficient due to inability to absorb B12. Increasing stomach acid will improve absorption of other vitamins/minerals but it wont fix an inability to absorb B12 or improve your thyroid health without replacement therapy
I have PA - AMA.

@nolovelost

Did they test for Vit D?

Yes, again apparently all ‘normal’.

Doctors will tell you 'normal' or fine if results fall even one point within range. Always pick up results for your own records (with ranges)
Check your D levels against this chart.
Vitamin D wellness is a good FB group to help you improve levels. Most people in UK need to supplement D daily along with vitamin K Mk7 so your calcium goes into bone and teeth

@YNK

The multivitamin will skew any B12 test for over 4m. Your GP is unlikely to understand this. You have neuro symptoms so you urgently need help. If you join this FB group there are word class experts who will advise you. www.facebook.com/groups/PAB12DSupportGroup

A very good book is 'Could it be B12 - An epidemic of misdiagnoses' by Sally Patcholok. You can get it on Amazon.

This site is very informative if you follow the links it will tell you most of what you need to know
www.b12deficiency.info/what-to-do-next/

The common denominator with B12d and hypothyroid is low stomach acid so doing this simple test could help you improve digestion, although if you have any eggs, fish, meat or dairy in your diet at least twice a week you are likely to be deficient due to inability to absorb B12. Increasing stomach acid will improve absorption of other vitamins/minerals but it wont fix an inability to absorb B12 or improve your thyroid health without replacement therapy
I have PA - AMA.

Thank you @YNK. My DSis has to have B12 injections and her first symptoms were tingling legs. I can’t seem to get my GP interested, it seems that as long as your results are ‘within range’ they won’t do anything more. The tingling is really scaring me, it’s been like it for weeks now and has been worse this week for some reason and I’m worried about permanent nerve damage. I need to get a copy of my NHS results to see what they say.

@YNK

Doctors will tell you 'normal' or fine if results fall even one point within range. Always pick up results for your own records (with ranges) Check your D levels against this chart. Vitamin D wellness is a good FB group to help you improve levels. Most people in UK need to supplement D daily along with vitamin K Mk7 so your calcium goes into bone and teeth

Thank you, that’s really helpful. Exactly, I thought that, I could be 1 point over and they will still say it’s ‘normal’. I do take a Vitamin D supplement daily but it just might not be enough for my body as we’re all different aren’t we? 😣

I'm glad you're getting your thyroid tested. You have a lot of the symptoms. Really important that you have Free T3 and Free T4 in the test and don't just use the traditional TSH which won't pick up all the issues. And do your research to understand the results- lots of us hypo queens are riddled with symptoms with results in the normal range, and get to know where in the range we need to be to feel OK.

Good resources are:
stopthethyroidmadness.com/
www.misslizzy.me/

If you are hypothyroid, vitamin supplements won't fix it, but they can help with some if the problems. Ones I notice if I don't supplement are:
Vit D, helps everything
Zinc, this is often behind hypothyroid hair loss
Selenium, needed to convert thyroid hormone to active version
Magnesium, can't remember why but I notice when I run out
Iron, energy levels
All the Bs but in particular have started B12 injections privately recently which I think are helping

@igotdemons B12d and hypothyroiditis are autoimmune conditions with a high heredity.
You are right in being concerned but since you were supplementing your doctor will not be alert to your issues from the blood test.
Your neuro will probably give you a misdiagnosis of fibro, CFS or FND and cease all further investigations. You will be prescribed lots of drugs that will do very little to help if your condition is B12d or thyroiditis (Hashi's)
It's a shame your doctor took a duvet day when they spent all of 3 hours learning about all vitamins and their deficiencies, but help is on hand from the group I posted above.

I’ve now got my NHS blood results...

Vitamin D - 72 nmol/L
B12 - 432 ng/L
Serum folate - 14.3 ug/L

Thyroid - Serum TSH Level = 3.22 mu/L
T4 = 11.9 pmol/L

All normal according to the ranges... 🤔

Are you also getting private tests?

Your TSH is slightly raised. The traditional reference ranges are widely seen to be much too wide, as they were drawn from a population which included hypothyroid people. You can have subclinical hypothyroidism with a TSH below 4 and personally i was having quite marked symptoms with the same score as you.

Check your T4 score against the range. Many hypo people find they need it well into the upper half of the range to feel well.

I went through the same experience. My neuro symptoms were getting really bad. I ticked most of the b12 deficiency symptoms yet my GP said my levels were fine, at 303, even though my MCH was extremely high and that's a sign of megaloplasty, ie. B12 anemia.

I've started self injecting. It took almost 6 months to finally feel normal. I certainly know when I need my next injection as I start to feel breathless, and like my body weighs twice its weight. I can't do the active test as I would need to be off injection for 4 months and I can't go back to where I was. It's frustrating not to have an official diagnosis but at least I can self medicate for which I'm grateful for.

Glad to find this thread. I've got doctor's appointment next week. Have been to and fro for last couple of years. Also exhausted, freezing cold etc. I had low ferritin previously so I take iron. My go just wanted to put me in the pill although I told her I can't take it because it pushes my BP up.

I am really interested in the low stomach acid. I concluded that the cause of my low iron issue was my omeprazole which I have to take because of acid reflux. I can't come off it. But obviously this means I have suppressed stomach acid .

I don't know how to untangle the mess I feel I'm in and doctor doesn't seem interested.

@igotdemons

I’ve now got my NHS blood results...

Vitamin D - 72 nmol/L
B12 - 432 ng/L
Serum folate - 14.3 ug/L

Thyroid - Serum TSH Level = 3.22 mu/L
T4 = 11.9 pmol/L

All normal according to the ranges... 🤔

Folate is good but still needs to come up a little bit to support B12 injections (needs to be in top 3rd of range if on B12 jabs) D could be slightly better. Thyroid panel with T4 would be helpful. Unfortunately your B12 level is skewed by supplementing so it's not useful and cannot rule out a deficiency. You could have the antibody tests (intrinsic factor and parietal cells) once off the supplements for 2w, but these antibodies are not present in 40-60% of PA cases. All B12 tests are skewed by supplementing for over 4 months.

@Mumteedum, low acid gives exactly the same symptoms as gerd. If you stop antacids for 2 days the bicarb test will give you some clarity. If you find your problem is low acid try drinking some lemon juice in warm water before a meal and if irritation persists it will only last until damage is healed. I'm told aniseed gaviscon is good for soothing without stopping acid production. After they had me on a decade of PPI's when I switched to increasing stomach acid my stomach was better within 2 months. I cannot begin to tell you the relief!

@OneMoreForExtra

Are you also getting private tests?

Your TSH is slightly raised. The traditional reference ranges are widely seen to be much too wide, as they were drawn from a population which included hypothyroid people. You can have subclinical hypothyroidism with a TSH below 4 and personally i was having quite marked symptoms with the same score as you.

Check your T4 score against the range. Many hypo people find they need it well into the upper half of the range to feel well.

Yes, getting private tests done next week, which should include full thyroid bloods.

@dontdisturbmenow

I went through the same experience. My neuro symptoms were getting really bad. I ticked most of the b12 deficiency symptoms yet my GP said my levels were fine, at 303, even though my MCH was extremely high and that's a sign of megaloplasty, ie. B12 anemia.

I've started self injecting. It took almost 6 months to finally feel normal. I certainly know when I need my next injection as I start to feel breathless, and like my body weighs twice its weight. I can't do the active test as I would need to be off injection for 4 months and I can't go back to where I was. It's frustrating not to have an official diagnosis but at least I can self medicate for which I'm grateful for.

Ah, OK, that’s interesting- I’m glad you are feeling better now.

How are you able to self inject, where do you get the injections from? The neuro symptoms are what is worrying me the most as I don’t want permanent nerve damage! 😣

@Mumteedum

Glad to find this thread. I've got doctor's appointment next week. Have been to and fro for last couple of years. Also exhausted, freezing cold etc. I had low ferritin previously so I take iron. My go just wanted to put me in the pill although I told her I can't take it because it pushes my BP up.

I am really interested in the low stomach acid. I concluded that the cause of my low iron issue was my omeprazole which I have to take because of acid reflux. I can't come off it. But obviously this means I have suppressed stomach acid .

I don't know how to untangle the mess I feel I'm in and doctor doesn't seem interested.

I absolutely share your frustration there, I feel exactly the same! My iron level was 26 last year (3 points over the minimum range) when my hair started falling out and I was experiencing heavy periods. I was taking a multivitamin so I am presuming that if I hadn’t have been I would have been anaemic. Doctor was absolutely insistent that my iron was OK. My levels are currently 56 because I’ve been taking an extra iron supplement so still not great (need to be above 70 for good hair growth). I hope you are able to start to get some help when you see your GP next week 💐

@YNK

Thank you, yes I will be discussing further at my next appointment and will see what my blood results are next week. Failing that I will book a private GP appointment which would be 30 minutes instead of the paltry 5 minutes I am allowed with my NHS GP.

My legs and feet are tingly for a reason and I want to know why, not be fobbed off that all my bloods are normal etc.

@igotdemons, if you join the group I posted they are able to guide you on self injecting, but for safety you need to get a first jab in a medical setting in case of a rare reaction. Reviv clinics and similar will do this for about £30.
Even if you are diagnosed and prescribed injections it's unusual that doctors will prescribe sufficient injections to heal neuro symptoms, so self injecting is very common, cheap, and convenient. It's also much easier than anyone imagines. I've injected daily for 6+ years now. Cost is less than £1 per injection + cofactors - cheap as chips, as they say - and without the hassle of fighting with doctors and being treated like a hypochondriac!

[quote YNK]@igotdemons, if you join the group I posted they are able to guide you on self injecting, but for safety you need to get a first jab in a medical setting in case of a rare reaction. Reviv clinics and similar will do this for about £30.
Even if you are diagnosed and prescribed injections it's unusual that doctors will prescribe sufficient injections to heal neuro symptoms, so self injecting is very common, cheap, and convenient. It's also much easier than anyone imagines. I've injected daily for 6+ years now. Cost is less than £1 per injection + cofactors - cheap as chips, as they say - and without the hassle of fighting with doctors and being treated like a hypochondriac![/quote]
Thank you, I wasn’t even aware this was a ‘thing’! 😮😳 It’s definitely worth looking into, it’s certainly cheap enough although there are no Reviv clinics within a 100 mile radius of where I live, I’d have to travel to London. I’ve experience of injecting myself so I know I could do it if I had to and it would benefit me.

B12 is available over the counter in a number if countries. Like most self-injecting in this country, I get mine from Germany online. Once you get used to it, it's not so bad. You can't overdose in B12 so it's pretty safe to try.

Most of the symptoms disappeared except for tinnitus. I still occasionally get the tingling and spasms, but it doesn't last. My balance is good and no more feeling lightheaded, thank God!

@igotdemons - it's worth the long trip since you only need to do it once, then you're home and dry with self injecting.

@dontdisturbmenow

B12 is available over the counter in a number if countries. Like most self-injecting in this country, I get mine from Germany online. Once you get used to it, it's not so bad. You can't overdose in B12 so it's pretty safe to try.

Most of the symptoms disappeared except for tinnitus. I still occasionally get the tingling and spasms, but it doesn't last. My balance is good and no more feeling lightheaded, thank God!

Yeah I got well stocked up with cyano in Spain before lockdown!

The tinnitus is a really stubborn neuro symptom - I only get it now when I'm very tired or stressed, thank heavens.
I pity those poor souls on nhs starvation rations.
One jab every 3 months is only going to keep you alive - it won't touch the neuro symptoms!

@igotdemons my ferritin levels were 11 when I was tested. They didn't bother to even tell me. They'd told me they'd ring if there was a problem and didn't. When I checked, months had gone by with awful symptoms.

After many more months I got levels up to 40. I was checked again and back down to 20 but doctor insisted this was fine and normal.

I was going to ask for another test last autumn when I was feeling awful but then all blood tests in my area were cancelled to do with covid.

In part, I felt better when perimenopause stopped my periods for 5 months but then they came back with a vengeance. If I mention peri, Dr tries to give me antidepressants and the pill.

I'm such a tangle of stuff. Feel like I'll never be well sometimes. It gets me down because I never have any energy. I'm a lone parent and work full time and I've got nothing left beyond responsibilities.

Sorry to moan!

@YNK you sound like you really know your stuff! I've thought for a long time that the omeprazole was an issue (Dr rubbished this) . I bought a book called the acid watchers diet. But I gave up when I tried to come off it as it was pure agony.

I'm sure I need to lose weight and do all manner of things but a lot of the time my head isn't in the right place to do it.

I'm a bit useless aren't I?😫

Oh and I have a referral because I started with dreadful tinnitus too!

[quote Mumteedum]@igotdemons my ferritin levels were 11 when I was tested. They didn't bother to even tell me. They'd told me they'd ring if there was a problem and didn't. When I checked, months had gone by with awful symptoms.

After many more months I got levels up to 40. I was checked again and back down to 20 but doctor insisted this was fine and normal.

I was going to ask for another test last autumn when I was feeling awful but then all blood tests in my area were cancelled to do with covid.

In part, I felt better when perimenopause stopped my periods for 5 months but then they came back with a vengeance. If I mention peri, Dr tries to give me antidepressants and the pill.

I'm such a tangle of stuff. Feel like I'll never be well sometimes. It gets me down because I never have any energy. I'm a lone parent and work full time and I've got nothing left beyond responsibilities.

Sorry to moan!

@YNK you sound like you really know your stuff! I've thought for a long time that the omeprazole was an issue (Dr rubbished this) . I bought a book called the acid watchers diet. But I gave up when I tried to come off it as it was pure agony.

I'm sure I need to lose weight and do all manner of things but a lot of the time my head isn't in the right place to do it.

I'm a bit useless aren't I?😫[/quote]
No you're not useless because you see the GP's are wearing the Emperors New Clothes!
Join the FB group I posted and you will get more options.
It might seem like an uphill journey but most of us get there in the end, or at least further than we started out!