Pernicious Anaemia Society
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Does someone recognize themselves in me?

I really hope that someone is able to help/recognize this because it's driving me crazy. First, I'll make a summary of my symptoms:

For as long as I can remember:

- cold hand and feet/body in general

- body parts 'sleeping' very easily

- abandonment anxiety

- mood swings

- really bad period cramps (throwing up, fainting, not being able to go to school when I was little)

Since a few years:

- Panic attacks (racing heartbeat and sweaty palms mostly)

- overthinking

- unmotivated

- developed OCD

- slight depression

- ENORMOUSLY worsened mood around period time (not able to function)

The symptoms I already have for as long as I can remember are still there, but those that appeared the last years make it the hardest.

My latest blood levels:

vit d: 20 (30-100); vit b12: 193 (189-750); folic acid: 3,5 (ranges 2,9-20); ferritin: 22 (ranges 16-300)

TSH: 5 (ranges 0,2-4) FT4: 15 (ranges 13-30); Sex Hormone Binding Globulin: 190 (18-144)

Those were my ranges BEFORE getting 1 injection of B12 a week during 5 weeks, taking 1000iU vit D a day and 400 mcg folic acid a day. I didn't notice any real improvement though.

Does someone PLEASE recognize this or know what I can do more? It's starting to ruin my life now and my uni studies..

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Is anything been done about the thyroid - raised TSH is indicative of an underactive thyroid - symptoms overlap a lot.

It does look as if you may have an absorption problem

Unfortunately 5 weeks isn't always enough time even for B12 to take effect - some of us don't really notice an improvement for months

Have you noticed any improvement in symptoms at all?

sorry can't be of much practical help.

more on thyroid

healthunlocked.com/thyroiduk

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No they don't do anything about the thyroid because TSH isn't high enough and FT4 is fine.

I did notice some improvement on the shots, but it has been almost a year since my last shot, so I think it's all out again :)

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Hi Laura221 are you saying your B12 results were taken a "almost a year after your last shot" Sorry, I'm a bit confused and it's late at night now.

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No, I meant that it's been almost a year since I received my last injection! :)

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In that case it must be worth asking your doctor for another course of B12 injections plus Vitamin D and Folic acid which are all low.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

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Your TSH is high and over, your t4 is low. And I bet your t3 is low or below.

You have struggling thyroid. All your symptoms point into struggling thyroid.

Your vit and min levels are indicative of struggling thyroid.

If it was me I'd repeat thyroid bloods another couple of times after 4 weeks and ask for t3 tested and antibodies for Hashi. If NHS refuse t3 and Hashi testing, do it privately.

In the meantime follow thyroid group on here for more advise and guidance.

You are symptomatic and indicative for underactive thyroid. If you won't start looking into it, they will keep you hypo for months or years until you get very I'll.

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The TSH levels have been checked for 5 years now every year, but they remain the same. I don't have TPO antibodies for Hashis though, so doctors say it can't be the thyroid.

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Then you've been underactive for 5 or more years.

It's up to you how you're going to proceed but it doesn't look like you're going to get better if your results didn't change for better last 5 years.

I would be pressing for treatment. I know easier said than done. Especially now. But you may try self medicating trial if doctor refuses.

Like I said, you're symptomatic and you're levels are indicative of (mild) but underactive thyroid.

By the way, healthy thyroid TSH output is 1.0, t3 in top of the range and t4 half way or slightly less than half. That's for disease free person without synthetic hormonal treatment.

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Okay but should I just leave the B12 then? Because 193 (or 148, depending on your ranges) also seems quite low?

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No, you should try to get your b12 levels higher as well at the same time.

Do you have PA? If yes, than you need injection if no, sublingual 3000 mcg a day will get your levels up very quickly.

Aim at 800 - 1000 blood results for b12.

Are you a vegetarian?

If no, do you know why your b12 is low?

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Your vit d and iron is also very low.

You need to get to your GP and ask for prescription for both.

vit d - aim at 100 blood results.

Iron - aim at 70 - 100 blood results.

So for both you need tablets.

I have a feeling your underactive thyroid causing all that low vit and minerals levels.

Get all all of them sorted at the same time.

If GP refuses prescription - vit d, iron, b12 you can buy yourself no script needed and it may be cheaper to source yourself if you pay for your prescriptions.

Don't buy multi vit.

Buy separate supplement.

I.e..

b12 3000 mg (i paid 20 quid amazon)

Ferrous furamate 3x a day 210 mg (ebay, 5 quid for three months treatment)

D3 soft gel tab 1 x day 5000 iu

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Hi have hou had thyroid checked. Your tsh is out of range and vit d far too low which can cause lots of problems. Your hormone globulin is out and im just wandering if its hormonal. Trouble is many symptoms for b12 deficiency and thyroid overlap. NhS only dies tsh and t4. But if tsh is definitely out of range they should act upon it. Thyroid affects so much including your hormones. Doctors are onky interested if out of the range which your tsh is so good luck with everything.

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Hi there,

Im sorry you are feeling so unwell.

My question would be why are you deficient in so much?

I would think malabsorbtion. So why are you not absorbing nutrients you are eating or supplimenting?

Do you have low stomach acid/ hypochloridia? You can try betaine hcl with pepsin.

Causes for hypochloridia include h pylori which is a root cause of b12 deficiency.

You can continue to suppliment as you are, in an effort to address the deficiencies but if you have h pylori and hypochloridia you will be fighting a never ending battle.

I think you are too young to just suppliment without looking for the root cause. You have such a long life to live to be unwell and supplimente forever.

Thyroid doesnt work properly without lots of nutrients.

Please test for h pylori and hypochloridia

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I developed really bad OCD when my B12 symptoms were at their worst. When I was on regular injections it completely disappeared and would come back if I went a long time without injections....so strange how it can affect literally EVERYTHING.

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