Pernicious Anaemia Society
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Been advised to also post on this forum re:B12

I have posted on here a couple of times to try and find out as much information as I can about a recent diagnosis of hypothyroidism. Since posting on here, I now know that I have Hashimoto's and have bought books and started researching as much as I can. From everyone who has given me advice, it seems a really good idea to go gluten free. I have had to push for a lot of tests with my GP and after my last test a couple of weeks ago when I was feeling particularly low, they came back as antibodies 416. I asked my GP what I should do next and he said come back for a re-test in 3 months. Both myself and my husband couldn't believe that I had to just wait another 3 months feeling so yuk, so I booked in to see an endocrinologist privately and saw him on Wednesday. I couldn't wait to see him and find the best way forward as I've ben reading so much and didn't want to go off like a headless chicken trying everything at once. Much to my disappointment, the Endo basically said he didn't think any of my symptoms are down to my thyroid issues but rather to do with the fact that "I'm a woman of a certain age and theres thousands like me who have grown up children and have more time on my hands"!!!! I knew at that point that I wasn't going to get any help from him. I asked what he thinks I should do next and he said he thinks that I will probably feel better in the Spring and that my GP has said that he would be happy to prescribe an anti-depressant!!!!! I managed to hold back the tears until I got home but am so disappointed that I they don't seem to be listening. However, I have now been to my GP and have a full list of the test results that I have had so far which are as follows:

June 2015

Serum free T3 level 4.8 (pmol/L6.50-3.50)

Serum free T4 level 12.6 (-11.00pmol/L23.00)

Serum TSH level 0.05> (L5.50 - 0.35)

Serum FSH level 4.6 (iu?L11.00-1.00)

A note under the results says - Suggest biochemically euthyroid with a suppressed TSH. Is hyperthyroidism suspected clinically? Suggest repeat TFTs in 1 month.

I was told by the GP that my test were abnormal and I needed testing in one month.

I went back one month later and my TSH level was 7.81(L5.50-0.35). I was told that this test fitted with all of my symptoms and they started me on a dose of 50mcg of Levothyroxine.

I have since gone back for regular tests and my TSH results have been 2.97, 1.37 and 2.63.

After taking the medication for 3 months and not feeling any better, after reading on this forum, I asked for my antibodies to be tested. The GP agreed to do the test and has done a lot of other tests including:

Serum folate - 5.7 (2.00-19.00)

Serum vitamin B12 - 288 (190-L900)

TPOab 416 (0.00-60.00)

MCH 31.2 (27-31)

And a whole range of other tests that all came back in normal range.

I was told by the GP that my antibodies were abnormal but to just go back in 3 months!! This was the point that I booked the Endo mentioned above!!

Anyway, sorry to go on and on.....but I just wanted to ask what the next step should be as I am going to try anything I can after Christmas.

Would the best thing be to go gluten free, dairy free and egg free for one month and then just introduce them gradually?

Also, from my test results, is there any other medication that I should be taking?

Are there any other tests that I should be having?

I am determined to get back to good health again!!! :)

Thank you

6 Replies

Do you have a result for your MCV (Mean Corpuscular Volume)? This would be on a full blood count (FBC). Your MCH result appears to be slightly high. Did your Gp comment on this? I get copies of all my blood tests. I learnt from experience that what i was told was normal sometimes wasn't when i got copies of results.

Have you got a result for ferritin?

High MCV and high MCH can indicate the possibility of a macrocytic anaemia. See Link below. Low iron can make red blood cells smaller, low B12 and/or low folate can make red blood cells larger. A patient with both conditions may have "normal" size red blood cells and a GP could miss both problems.

Although your B12 is within normal range, some people are symptomatic for B12 deficiency with results that are normal range.

What symptoms do you have? B12 deficiency is often found with thyroid problems.

Websites for B12 deficiency/PA


01656 769467


"Could it be B12" by sally pacholok and JJ.stuart

"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper


Google "BCSH Cobalamin and folate guidelines"

Have you ever had a coeliac test?

I am not a medic, just a patient who has struggled to get a diagnosis and wants people to have the info they need.

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My MCV result was 95.8 (fl 102.00-82.00). My GP said that all of my results were normal except the antibodies result of 416. It doesn't look like I have been tested for Ferritin or Vitamin D. When I discussed a gluten free diet with the Endo, he did say that he would request a coeliac test with my GP.

My symptoms are:

•Feeling extremely tired/no energy

•Feeling nervous/anxious for no reason

•Irregular periods (Bleeding for 1 week, not for 2)

oPainful breasts 3-4 days before period, low mood for 1 week before period, sharp pain on right side 1-2 days before period.

•Mood swings from High to Low

•Weepy for no reason

•Feeling insecure

•Aching joints - wrists, elbows, ankles

•Shoulder pain/hip pain/pain under ribs (on left side)

•Thick feeling in throat that wakes me up at night

•Hoarse throat at times

•Irregular sleep patterns at times

•Feeling cold a lot

•Hearing difficulties when there are several different sounds

•Hard to concentrate/focus on a task

•Generally feeling older than my years

•Blurred vision in right eye

•Heavy/dead arms in the mornings

The Endo looked at all of this list of symptoms and said that they were nothing to do with my thyroid issues because if they were, they would have stopped when I started taking my Levo.

Thank you so much for all of the info.

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What a stupid, sexist assessment from the endocrinologist. You must have been furious after paying privately as well. How dare they speak to people like this. Sympathy.

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I can't believe that professionals can fob people off like that. I was just hoping for a list of things that I could do to improve my health and came away feeling worse. Anyway, after receiving lots of info from this forum, I have purchased some vitamins and will start them next week.

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I have had Hashimotos for 27 years. I stared on 50 thyroxin now its 125 it was 150 in its heyday. it goes up and down sometimes. I didnt really worry about this as the thyroxin worked. The B12 is diagnosed on symptoms as well so this should be raised again I feel. I dont like the sexist nonsense you got. I heard that myself , getting old I was 59 then they found a B12 of 20 and haemoglobin of 8 and large red cells heart murmur and angina. Got better with B12 but balance still iffy. I have had a stroke though. Bottom line for me is DONT BE FOBBED OFF. Good luck and take care . Dont let them grind you down Girl Power x

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Hi Gillycee,

I can relate to a lot of your symptoms. I was highly symptomatic for B12 deficiency with an MCV of about 95. My MCH has been high and is still on the borderline.

The "BCSH Cobalamin and Folate guidelines", which I think are well worth reading, make it clear that some people with b12 deficiency do not have macrocytosis (enlarged red blood cells). The PAS has a summary of this document in the library section on their website.

I hope your GP gives you a ferritin test at some point. If your iron is low then this could mask macrocytosis (it could make your MCV lower).

Good news that the endo is recommending a coeliac test. I read on the Coeliac UK website that it is important to maintain good levels of gluten in diet before the test.

It is still possible to have Coeliac disease even if test comes back negative. See links below.

recent documents including the ones I listed in my post above make it clear that a patient who is symptomatic for B12 deficiency should be tretaed even if their blood tests are "normal" range".

I gave copies of the BCSH Guidelines, UKneqas statement and BMJ article to my GP.

"I have purchased some vitamins and will start them next week."

Everybody has to make their own decision on whether or not to self treat. My experience has been that self treating has made it impossible to get a diagnosis with the NHS and I am faced with funding B12 for the rest of my life. See link below.

This link lists other blood tests such as MMA, Homocysteine and Active B12 that can be useful in helping to diagnose whther or not someone has a B12 deficiency. I think that the results of some of these tests can be affected if a person is already supplementing. The results may also be affected by whether or not someone has fasted beforehand.

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