Please can you advise me, should I take supplements?

I wrote a post on the ThyroidUk Community and received loads of help and advice. Link is:

healthunlocked.com/thyroidu...

However, I have been doing some research on the PAS website and am now very confused, hence the question.

The other blood test results which may be relevant before you answer are as follows:

Haemoglobin Estimation 127 g/L (115.00 - 165.00 g/L)

Total White cell count 5.7 x 10* 9/L (4.00 - 10 x 10*9/L)

Platelet count 251 x 10*9/L (150 - 400 x 10*9/L)

Haematocrit 37.1% (36 - 46%)

Red Blood Cell(RBC)Count 4.03 x 10*12/L (3.8 - 5.8 x10*12/L)

MCV 92.2 fL (77 - 101 fL)

MCH 31.5 pg (27 - 32.00 pg)

MCHC 342 g/L (315 - 345 g/L)

Red Blood Cell Distribution Width 13.4% (11.6 - 14%)

Neutrophil Count 3.0 x 10*9/L (2 - 7.5 x 10*9/L)

Lymphocyte count 2.1 x 10*9/L (1 - 3 x10*9/L)

Monocyte Count 0.5 x 10*9/L (0.2 - 1.0 x 10*9/L)

Eosinophil Count 0.10 x 10*9/L (0.02 - 0.5 x 10*9/L)

I have already bought sublingual methylcobalamin and folate to supplement my diet and was intending to buy ferrous fumarate and Vitamin C as advised.

Now i am getting the impression that these do not work and I will need injections? My doctor will not even consider my symptoms and just says my blood test results are all normal (which they are!) so what is the best way for me to proceed?

Thank you so much for reading all this, any help would be most welcome.

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Hi firecrest,

I do not know much about thyroid, but from your other post this shows some inflammation going on, re: "Erythrocyte sedimentation rate 23mm (0.00 - 20 mm)". Your ferritin levels seem low at 20 , so taking some sort of iron supplement with something like orange juice and no coffee and or tea at the same time could be good. I do not understand why you think you have to have injections, your best bet would be to have the active B12 test before you supplement with any B12 to find out if you have a B12 def at tissue level, as your serum B12 is in the low end of "normal". But as you say all your blood results are in the "normal" range but for the ESR's, which could be a sign of inflammation. They can be raised in a host of other conditions, so without knowing your symptoms its impossible to say yes B12 would help you.

But if you do not want further testing, then you can try B12 supplements to see if that works, it works for some, not others. I just personally would first get all possible investigations done to hopefully get a proper diagnosis and then the right treatment you may need,

I hope this helps,

Kind regards,

Marre.

[Hidden in reply to Hidden]

Hello Marre and thank you for replying.

Sorry, I do not really understand "this shows some inflammation going on"

Also, to try and answer your response:

"I do not understand why you think you have to have injections, your best bet would be to have the active B12 test before you supplement with any B12 to find out if you have a B12 def at tissue level, as your serum B12 is in the low end of "normal"."

From all the reading I have been doing on this subject, I get the impression that B12 injections are the best treatment for a deficiency( which may be caused by an autoimmune condition) and sublingual supplements are a poor second to injections? I just want to do the best thing for my health.

I would not be able to get an active B12 test from my Drs surgery so it may be an idea to research private testing?

Some of my symptoms are at the beginning of my other post. The symptoms I have which are different from my experience with hypothyroidism are bad tinnitus, urine problems, forgetting names of things, tingling in arms and legs. Symptoms which are similar to low thyroid levels (and could possibly be caused by body not converting my T4 to T3) are Tiredness, lethargy, mental slowness, inability to concentrate, desire to be alone, irritability, light-headeness and others.

It took over ten years to diagnose my hypothyroidism and I was really ill. The thought of fighting again just makes me despair.

Thank you so much for taking the time to reply, I really do appreciate it.

[Gambit62 Administrator in reply to Hidden]

Don't know if this helps but:

recommended treatment for B12 Deficiency in the UK, where dietary deficiency isn't suspected, is injection with Hydroxocobalamin. If there are neurological symptoms - and you describe some then the loading shot regime would be one shot every other day until symptoms stop improving. If the deficiency can be traced to lack of B12 in the diet then treatment would be using tablets as the body should be able to absorb B12 through the gut.

Injections are not the only way of treating B12D due to malabsorption problems, but there seems to have been very little attention to other possible treatments. There does seem to be a lot of variation in the way people respond to different formats of B12 and also to different ways of getting it into the body - routes include sub-lingual, nasal and skin patches ... I think I even read something somewhere about suppository ... ie it is a question of finding a different membrane through which to absorb B12 if that is what lead to the problem in the first place. If you have a problem with malabsorption (which is where IFA - intrinsic factor antibodies come in) then you will need to keep topping up B12 periodically unless you can identify a mechanism that is responsible for the malabsorption - eg excessive levels of acid which can occur in some other conditions (including Thyroid problems, I think), and some 'heart-burn' medications can also make things worse.

People with neurological problems seem to report that they respond better to methylcobalamin than hydroxocobalamin.

I find using high doses of hydroxocobalamin taken nasally works for me but that is a lot more expensive than injections would be. It isn't something that is available on the NHS.

You can get the tests done privately at St Thomas's hospital in London but not sure of the contact details.

If you have low levels of B9 that can affect how efficient your body is in using it's B12. If you have a B6 deficiency that can lead to a B9 deficiency and vice-versa.

[Hidden in reply to Gambit62]

Very informative Gambit62, thank you so much for responding. I may try a b-complex to take when I start sublingual B12 and folate after reading your post.

I am very grateful for all your help, thank you.

[Hidden]

Hi firecrest,

I'm sorry you feel so bad, and sorry you feel a fight coming..I kinow it is hard and not what you need when you are ill, but its the only way to possibly get what you may need treatment wise.

For info on ESR see:

labtestsonline.org/understa...

The Active B12 test would be the best test to have I think witrh your low end of normal serum B12 and the symptoms you have. For more info see:

viapath.co.uk/our-tests/act...

And:

active-b12.com/home

active-b12.com/content/acti...

Its just that these tests are only useful before you start treatment so worth having before you try self treating etc.

I hope this helps you further,

Marre.

[Hidden in reply to Hidden]

Thank you again. I have contacted Blue horizon to have the Active B12 test plus Advanced Thyroid Profile ( TSH, T4, free T3, free T4, Thyroid antibodies).

The Nurse at my GP's practise has kindly agreed to take the blood for me (unless Dr stops her and I don't think he will as I am paying for the tests!)

I have been researching the Active-B12 test and sad to see unfortunately it is not conclusive either.

If all the tests comes back normal, I will then start to take the supplements and see if I improve.

I am getting frequent stomach aches and I am also getting more "wind" and burping a lot (Sorry if this is "too much information") which is amazing for me as I have suffered from not being able to burp all my life! My mother then later my poor partner had to rub and pat my back for ages to bring up one pathetic little burp when I felt really nauseous with it. I never bothered with medication as intermittent.

Thank you for your help and advice.

[Hidden in reply to Hidden]

Sounds very sensible to me. The Active B12 test is just the cheapest, if it shows a result in their marginal range then MMA test is recommended, but that one is a lot more expensive. I hope for you that you get conclusive results that then will help you further in getting the right treatment for you. The stomach problems could be a lack of acidity, try adding a bit of lemon to water when you eat, to see if that helps digestion, it can do no harm and has been helpful for some. I hate burping, I had that as a side effect from taking adcall (for osteoporosis, vit D3 with calcium), I stopped taking it, can not stand having to sit upright after a meal, to tired for that at the end of the day. Marre.

[Hidden in reply to Hidden]

Thank you again marre.

I take adcall and it does make me feel nauseous so you have just solved the mystery of too much burping.............thank you. I will continue to take it, I had forgotten to obtain new supplies so missed a few days, I bet going on it again has caused the problem.

My brain is 'full' at the moment trying to sort out Thyroid dose and B12 so did not think about the adcall. Am I the only woman around who cannot

multi-task?

Thank you again, I will post on here with results etc.

[Hidden in reply to Hidden]

Hope you know that you have to keep calcium (adcal) away from thyroid meds, at least 4 hours separation is needed I believe from memory, Marre.

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Yes, thanks marre. I have to keep the Letrozole separate as well.