Beginning to feel like Im in an episode of House (minus Hugh Laurie!)

[LeanneMarie87]

Hello,

I’m wondering if anyone can help, Im new here but I’ve been struggling with intermittent symptoms beginning with the flu followed by pin and needles in my leg whist in the gym in January.

Since then I’ve experienced intermittent symptoms, (a week on, 3 days off for example) the list of which is below.

My GP ordered full bloods, which were

B12 – 183 ng/L (220-770)

Folate – 6.9 ug/L (3.9 – 27)

Serum TSH – 1.6 mu/L (0.3 – 6.00)

Serum Free T4 – 13.7 (10 – 22)

Ferritin – 63 ug/L (13.00 – 150)

FBC

Hemo Estimation 145 g/L (118.148)

RBC – 4.62 10*912/L (3.88 – 4.99)

MCV – 90 fL 980 – 100)

MCH – 31.4pg (28 – 33)

Intrinsic Factor Antibody – Negative

Anti Gastric Parental Cell – Negative

My GP has me on every other day injections of B12 (currently on no.12) but Ive seen only intermittent improvements which only seem to last a day or so then I’m back to square one.

Two neurologists have concluded that their examinations are normal and expect the MRI scans I’m awaiting will also be normal.

I’m going out of my mind. I feel like a zombie version of myself.

A colleague suggested it could have something to do with my thyroid (which my nan and aunt also have) and I wondered if anyone has had a similar experience or could better help me understand my bloods, it would be most appreciated.

(I also take Magnesium 300ug, Folic Acid 400ug and Vit D 1000ug daily since around two weeks ago and have been celiac for 3 years)

Thank You, Leanne

Symptoms

- Tingling in toes, feet, legs (up to knee, which is new), fingers, hand and some times in forearm though not common.

-Fatigue

-Lack of concentration/focus, distracted easily by noise, unable to multi task

-Stiffness in hands and fingers, some numbness in fingers though this is new and only happened a couple of times

-Brain Fog, difficulty remembering words and spellings of things

-Anxious, feeling unable to relax, on edge, worrying and feeling out of it.

-Nausea, not accompanied by vomiting

-Jelly Legs, weakness and difficulty walking (new)

-Numbness in toes, intermittent and lasts a few minutes

-Muscle twitches

-Heart Palpitations, like your heart is beating out of your chest

-Low Mood, avoiding social situations, feeling down and easily emotional

-Dizziness, not spinning though

- Vision, trouble focusing; last a couple of minutes and passes

-Feeling cold more

-Bladder, needing to urinate more often remedied quickly and some incontinence when running at the beginning hasn't happened since

-Burning sensation in feet, hands and legs

-Headaches

-Chest Pains, sharp pains like a stitch, these seem to accompany only severe symptoms

[greygoose]

Well, you are hypo, with a TSH of 16, so is your doctor treating that? Are you on levo or something?

Your ferritin is also very low - are you taking any iron?

Are you taking a daily B complex? Because all the Bs work together, and need to be kept balanced, so if you're having B12 shots, it's important to take the other B vits, too. Plus your folate is a bit low, so you need a B complex with at least 400 mcg methylfolate.

[LeanneMarie87 in reply to greygoose]

Thank you for your response greygoose and I should apologise my TSH is 1.6 (my fingers are particularly bad today and I didn't realise id missed the all important decimal! sorry about that)

My GP didn't recommend iron or additional b bits but I'll certainly order some now! Do you know if its ok to take iron with a high in range hemo estimation and RBC?

[greygoose in reply to LeanneMarie87]

No, I'm sorry, I don't know much about iron at all. It's a complicated subject. If I were you, I would start a new thread asking just about the iron panel results.

GPs don't seem to know about keeping the B vits balanced. He'd probably just tell you to buy your own, anyway.

[SeasideSusie Remembering in reply to LeanneMarie87]

"Ferritin – 63 ug/L (13.00 – 150)"

Is that correct - 63?

If so it's only a bit low. Ferritin needs to be 70 for thyroid hormone to work (our own as well as replacement hormone). Recommended is said to be half way through range.

I suggest eating liver every couple of weeks, that will raise your Ferritin level.

**

What is your Vit D level? You may not be taking enough D3. Also, there are important cofactors we need to take when supplementing with D3 - magnesium and Vit K2-mk7. 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 tissue where it can be deposited and cause problems. Magnesium helps your body use the D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, magnesium is calming and best taken I the evening.

**

I would ditch the folic acid, methylfolate is the better version. A good B Complex containing 400mcg methylfolate is Thorne Basic B.

[LeanneMarie87 in reply to SeasideSusie]

Thank you so much for your advice, on your recommendation I asked for Vit D blood tests and have begun supplimenting in the meantime. It seemed to really help and I had a great week last week only for me to miss two injections given the bank holiday weekend and catch a nasty cold in the process which has sent me back to square one! I’m trying to be optimist though and hopefully I’ll get there again!

Thank you again for your advice, L

[SeasideSusie Remembering in reply to LeanneMarie87]

Come back with the result and I'll suggest the correct level of D3 to supplement and give details of the important cofactors that need to be taken when supplementing with D3.

[LeanneMarie87 in reply to SeasideSusie]

Hi Susie, I just received the results which are 65nmol/L (<75nmol/L) which my doctor has said is satisfactory so I don’t need to supplement. I should mention I had been supplimenting with Vit D 1000 for about a week prior to the blood tests which my go advised shouldn’t have made a difference

[SeasideSusie Remembering in reply to LeanneMarie87]

The Vit D Council recommends a level of 100-150nmol so although your level isn't deficient, it's not optimal either.

It doesn't matter about testing when supplementing, you just don't take it until after the blood draw on the day of the test.

I would increase your dose of supplement for now, maybe 3000iu daily for 2-3 months then retest. When you've reached the recommended level then you'll need to find your maintenance dose by trial and error, it may be 2000iu, maybe less, you may need more in winter, less in summer so we need to test twice a year when supplementing to keep within the recommended range.

Your GP won't agree, they just have to get you into "sufficient" category, that's all so you will have to do private fingerprick blood spot tests vitamindtest.org.uk/index.h...

Important cofactors needed when taking D3 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 tissue where it can be deposited and cause problems.

Magnesium helps D3 to work. Choose the best form to suit you naturalnews.com/046401_magn...

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, 4 hours away from thyroid meds. Magnesium is calming so best taken in the evening 4 hours away from thyroid meds.

[SlowDragon Administrator]

If you start or are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[SlowDragon Administrator]

Would recommend a good vitamin B complex for the peripheral neuropathy symptoms, they can be due to other B vitamins being too low as well as B12

drgominak.com/sleep/vitamin...

[Jazzw]

It’s probably mostly due to the low B12. It does take a while to restablish health after levels have dropped so much. I see you’ve tested negative for intrinsic factor - however, that doesn’t mean that it isn’t pernicious anaemia (it can take a while for the evidence to show up). However, there may be another reason for low B12. Coeliac disease is just one of the stomach/gut issues that could be causing it - has your doctor mentioned that?

There will be more advice on low B12 issues here: healthunlocked.com/pasoc - I recommend copying your post across as we’re a thyroid issues forum.

Have your Vit D levels been checked?

[LeanneMarie87 in reply to Jazzw]

Apologies for the late reply and thank you for your advice, I didn’t realise celiac could be the culprit! I also took your advice and asked for my Vit D to be checked and I’m waiting on the results. Thank you again!

[SlowDragon Administrator in reply to LeanneMarie87]

Low vitamin D, low magnesium and low B12 are often present with coeliac disease

NHS is not good on teaching or promotion of good nutritional support

b12patch.com/blog/celiac-an...

scdlifestyle.com/2012/07/wh...

glutenfreeworks.com/blog/20...

[LeanneMarie87 in reply to SlowDragon]

It’s madness that GPS arnt better informed about these issues.

Three years ago a GP in my previous town suggested she thought I was celiac and advised me to avoid gluten and diary from that point on, I did and saw huge improvements.

However according to my now gp this was never an official diagnosis and in order to be tested I would now have to consume gluten everyday over a period of months to be tested and make it “official”.

I doubt my body can take much more so I’ve opted out of that little experiment!

Thank you for pointing me in the direction of those articles, it’s makes so much more sense now!

[SlowDragon Administrator in reply to LeanneMarie87]

Many of us with Hashimoto's are gluten intolerant not coeliac

I had two negative coeliac blood tests, endoscopy results said probably coeliac but to run DNA test to confirm. Result of DNA test.....unlikely coeliac.

It's an irrelevant badge.

It's the same result if gluten intolerant or coeliac....poor gut function and low vitamins

Saw coeliac dietitian who had no idea about any vitamin deficiencies. Her only concern was as I wasn't "officially coeliac" I wouldn't get GF products on prescription.

[Singoutloud]

These are all classic symptom of B12 deficiency /pernicious anaemia. The intrinsic factor test is not particularly accurate unfortunately so can show negative for antibodies. Being coeliac is a possible reason for not being able to absorb B12. Hydroxycobalimin is better cyanocobalamin for injecting so double check with the surgery next time you go.

Add in a B complex with folic acid. To help the B vit balanced and keep your folate levels up (I use Jarrows B Right 3 or 4 times a week) folic acid is needed to utilise the B12.

It can take a long time to repair the damage done by B12 deficiency so be patient.

After the 6 loading doses I have been on injections every 8 weeks for two years. In between I self injected B12 subcutaneously & took high dose supplements 4x a day up until a couple of months ago. I'm only now at the point where the majority of the symptoms you're experiencing are starting to ease although tinnitus appears to be permanent although even now some return 3 weeks before next injection is due.

[LeanneMarie87 in reply to Singoutloud]

Apologies for the late response and thank you so much for sharing your experience it has helped ease some of my worry and I’ll certainly be taking your advice on the b complex vits too!

[SilverAvocado]

You've had great advice from some of our experts in vitamins! I agree with others that you should repeat your post in the pernicious anaemia forum on HealthUnlocked, as they are also v good, and are the real experts in B12.