Any advice please trying to find a way forward - Thyroid UK

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Any advice please trying to find a way forward

bevlah profile image
5 Replies

I am 49 years old, i have been diagnosed with under- active thyroid for 11 years treated quite successfully up until September this year with thyroxine only, in September i became very unwell and did not respond to an increase in my medication after three weeks of chopping and changing the dose I was prescribed T3, however i met with a friend who is a naturopath , she practices in Australia and she recommended that i go back t GP and ask for additional tests namely B12, ferritin, folate, vit D and iron , my Gp agreed and i have a full blood screen too. Oh and I asked to be tested for thyroid hormones too

Results B12 226ng/L range 187-883

ferritin 37.0ug/L range 13-150

Floate 8.2ng/ml range 3.1-20.5

Iron -not tested

vit D 77 no range on results ( i had just got back from Spain !)

Thyroid peroxidase 62iu/mL range 0-5.61

But i also have Low serum inorganic phosphate level-0.78mnol/L range 0.8-1.50

MCV 104.5fl range 77-98

MCH 34.1pg range 27.3-32.6

I've been to see my endocrinologist he could offer no explanation as to why MCV/MCh results were elevated other than "the commonest reason for this combination is alcohol intake above the recommended limit!" i have two children and work full time yes i am guilty of a glass of wine or two at the weekends

I am so angry and upset , i asked about B12/folate as my levels although in range are low and i have been reading that they should be up in upper 25% range to assist my thyroid condition, he just kept insisting i was in range , i did out that range was for a healthy person and clearly i am not.he has written the most patronising letter and offered me another appt in February, he referred to haematology but they have replied stating they have nothing more to offer, and will not recommend supplementing B12 as I'm in range ! Although they did note that elevated MCV may be due to thyroid condition rather than alcohol. all i want is to feel as well as i can , although i am feeling better and back at work after 5 weeks off , i am still so tired and am still struggling with my memory at times,

I anyone has any advice or insight I would really appreciate it (and sorry for the rant!)

I'm currently taking 100mcg thyroxine and 10mcg T3(started T3 early october) due to have blood test 10th December.

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bevlah
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5 Replies
SeasideSusie profile image
SeasideSusieRemembering

bevlah

I just get more and more angry when I read what these doctors say.

They don't have training in nutrition so are unlikely to understand anything about optimal levels for us Hypos.

B12 226ng/L range 187-883 (ng/L = pg/ml)

This is low, no doubt about it. Do you have any signs of B12 deficiency - check here

b12deficiency.info/signs-an...

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

So if you do have any signs, list them and speak to your GP and ask for further testing for B12 deficiency/pernicious anaemia. My understand is that they should be guided by symptoms, not numbers.

An extract from the book, "Could it be B12?" by Sally M. Pacholok says:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

So if you have no signs of B12 deficiency then you could self supplement with sublingual methylcobalamin lozenges along with a good B Complex to balance all the B vitamins. Do not supplement either of these if you do have symptoms, testing must come first, then the B12 injections/supplements, then the B Complex.

Folate 8.2ng/ml range 3.1-20.5

This should be at least half way through it's range, so 12+ with that range. Lots of folate rich foods can help, as can a good B Complex.

vit D 77

What is the unit of measurement - nmol/L or ng/ml

If it's nmol/L then you're too low and need to supplement. If it's ng/ml then you are actually higher than the recommended level.

Add the unit of measurement and I can comment further.

ferritin 37.0ug/L range 13-150

This is low. For thyroid hormone to work (that's our own as well as replacement hormone) it's said that ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

MCV 104.5fl range 77-98

MCH 34.1pg range 27.3-32.6

I'm not that well read on this so you will have to do your own research, but MCH results tend to mirror MCV results and high MCH can be a sign of macrocytic anemia which can be caused by B12 or folate deficiency (also can be caused by alcoholism but it seems that you can discount that). So here is another reason for your GP to test for B12 deficiency.

Also, from labtestsonline.org.uk/tests...

MCV (Mean Corpuscular Volume) Increased with liver disease, underactive thyroid, pregnancy, alcohol excess, some bone marrow disorders; decreased with iron deficiency, longstanding inflammatory disorders

Low serum inorganic phosphate

You can read about that here, click on "What does the test result mean"

labtestsonline.org.uk/tests...

Thyroid peroxidase 62iu/mL range 0-5.61

I've not seen that range before but raised antibodies point to autoimmune thyroid disease aka Hashimoto's - did you know about that? This is where the thyroid is attacked and gradually destroyed. The antibodies fluctuate and cause fluctuations in symptoms and test results.

You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies, and your B12 level would bear this out, also low ferritin.

Do you have your latest thyroid test results to post (with ranges)?

bevlah profile image
bevlah in reply toSeasideSusie

Hi the test results I posted were from 8th October due to have next blood test on 10th December I have agreed with my gp that I will supplement b12 with sublingual lozenges and see if this helps improve levels . If not ( due to possible absorption problems) she will start injections . I’m also taking a multivitamin and iron tablets so now it’s just a case of wait and see . I’m currently reading could it be b12? My gp is pretty good and open minded! Endo is rubbish and I will not be seeing him again .

shaws profile image
shawsAdministrator

Do we help to train doctors through taxes etc, then for doctors who make the statements you've had from an expert we should ask for a refund from the tax inspector as it would seem the 'expert's knowledge isn't so expert.

Deficiency of B12 can also cause alzeimers. Maybe give her a copy of the following link of which this is an extract:

B12 Deficiency and Cognitive Decline

The association of B12 deficiency and neurological symptoms is well documented, as noted in the Chicago Health and Aging Project, a longitudinal population study of common chronic health problems of older adults, especially of risk factors for incident Alzheimer’s disease. B12 is necessary for maintenance of the myelin sheath of nerves. Recent research reports on several relationships between a correlation with levels of B12-related markers (but not serum B12) and standardized neuropsychological tests of cognition itself as well as global cognitive function and total brain volume. Methylmalonate levels were associated with poorer episodic memory and perceptual speed, and cystathionine and 2-methylcitrate with poorer episodic and semantic memory. Homocysteine levels were associated with decreased total brain volume.

Therefore, markers of B12 deficiency but not serum B12 levels themselves may correlate with cognition and brain volume. According to the Rush study, results showed that high levels of four of five markers for B12 deficiency were associated with lower scores on cognitive tests and smaller brain volume.

todaysgeriatricmedicine.com...

I was fortunate, years ago - never had symptoms- a doctor told me my blood 'didn't look right' and I had a Schilling test (mentioned in the link) which confirmed I had P.A. my mother had Pernicious Anaemia.

The UK expert is a Dr Chandy who was reprimanded for giving many of his patients a prescription for B12 but his patients loved him as they had relief of symptoms.

youtube.com/watch?v=klobLSx...

DotLeeds profile image
DotLeeds

You need to talk again to your doctors and explain all your symptoms. I take a vitamin B complex (Healthspan) and I find it helps. I did need iron and folate tablets from doctors for 3 months to get my levels higher, I had developed confusion due to size of blood cells not carrying oxygen as efficiently as needed to the brain.

MissDemeanour191 profile image
MissDemeanour191

You may be suffering with menopause symptoms as well. Navigating menopause AND hypothyroidism is absolute nightmare....is it that? Or is it that? kind of scenario, plus interactions with meds as well e.g HRT.

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