Update after private haematologist

[Galadriel1]

I have posted this already in reply to my original post about the haematologist referral, but wasn't sure if it would show up in the main forum so am posting here too. Hope that's ok.

Hi All I am sorry I have taken so long to update the group. The constant fight is exhausting! Haematologist came back and said that my MRI was fine, no issues and said -

"test of B12 status has shown a normal urine MMA/creatinine ratio and a normal serum homocysteine level consistent with a normal tissue B12 level." He went on to say - "there is no justification on the basis of these blood tests to administer B12 injections more frequently than at 2 weekly intervals."

He goes on to state that he believes the bleeding gums is down to my extremely low Vit. C. 4 (25-?) and recommends ascorbic acid for 6 weeks and then a lower maintenance dose of 50mg daily.

He then totally dismisses all the usual symptoms of B12 saying -

" With regards to her ongoing symptoms of memory loss, forgetfulness, foggy headed-ness and extreme lethargy, I went on to reassure Mrs ??? that I doubt these symptoms ca be attributed to B!12 deficiency."

He then ends with saying that as my symptoms are troubling me to "..such a degree, I think she would benefit from a referral to a Neurologist."

Verbally to me he thought Dr should refer me to a memory clinic and told me Dr should have given me ongoing maintenance dose of D3 as per the guidelines, but did not mention any of this in letter to Dr.

The letter resulted in Dr's refusing to give me anymore that 1 injection every 2 weeks despite me saying I should be having every other day until no further improvement and I still have serious neurological issues but they are now totally dismissing that on the basis of the above statement from the haematologist. Have an appointment to discuss the reults.... just don't know what to say to convince Dr. I need more frequent injections as I stopped the every other day very prematurely due to fear of Dr stopping them altogether after being told by nurse if I didn't agree to a re-test of B12 serum,treatment would be withdrawn, (explained in another post).

Help! Sooo fed up!

[Galadriel1]

Should have posted full results:

Vitamin D lever 65.6 (50-150)

TSH 4.8

Folate 15.2

Red Cell Folate 655 (150 -700)

Serum Ferritin 43

Serum B12 >1500

IFA - Neg

Serum Homocysteine 9 (0-16)

Urine MMA/creatinine ratio 1.7 (0.2-2.4)

Been taking folic acid 400 daily. Also a daily multivitamin.

[PAS-admin Partner in reply to Galadriel1]

These were tested after you started B12, so B12, MMA and homocysteine say nothing much (or at all) Completely normal that these results are normal.

IFA negative does not rule out PA (see our Pinned Posts for more info)

TSH is too high. I suggest to get a full thyroid panel tested and posts those results on Thyroid UK. There might be a problem with your thyroid (hypo-), which will cause a variety of symptoms (as well)

D you could increase a little yourself, usually not enough in a multi to do anything. Folate/ferritin are fine.

[Marz]

You need more thorough Thyroid Testing - a TSH of 4.8 is clearly Hypo. A healthy person will have a TSH of around 2.5 or less. You also need to have the FT4 and the FT3 tested and the anti-bodies Anti-TPO and Anti-Tg. The TSH on its own tells you very little and after all it is a Pituitary hormone You need the full story ....

Ferritin could do with being mid-range too ...... Multi-vits rarely have enough of anything in them to make a difference - best to find out your deficiencies and supplement accordingly .

[Pixielula]

THS is high enough to be causing symptoms. Is your thyroid being medicated?

[Galadriel1 in reply to Pixielula]

Nope! just looked at first TSH result back in Nov 2015 and it was 2.59 but in comments it states;

"Euthyroid or adequate replacement.

Rately, patients with pituitary/hypothalmic hypothyroidism can have a normal TSH."

This was not even mentioned to me but it looks to me like I should have been further tested on this but I was told my TSH was normal so no problem there. It has now obviously risen to the 4.8 it is now.

[Pixielula in reply to Galadriel1]

When was your blood taken? (Time of day) If your GP wants a further test it needs to be done first thing before food or tea and coffee, basically a fasting blood test. You can have all the symptoms in the book of hypothyroidism but unless you have a very good GP you will not get treatment on symptoms alone. Your THS is highest first thing once you drink or eat it starts to drop and as the morning goes on it drops further. You need it to be as high as possible, we seem to have a crazy system in the uk now and GPs seem to only treat blood test and no longer treat symptoms. Last year due to my GP reducing my thyroid meds my THS went up to 4.98 I felt like death warmed over and am only just feeling like I'm recovering .....

[Galadriel1 in reply to Pixielula]

Wow, that's a good point the one of 2.59 in Nov 2015 was non fasting and I think was late afternoon, the recent one of 4.8 was a full fasting test taken around midday.

[Marz in reply to Galadriel1]

If your GP is not co-operative about FULL and proper testing for the thyroid you could have it done through Thyroid UK privately - with Blue Horizon - Bundle 11 is a good and popular test.

thyroiduk.org.uk/tuk/testin...

[Pixielula]

So it would be higher if taken first thing that would explain some symptoms. I have hashimotos and a B12 deficiency and find a lot of symptoms overlap .....