Repost from Thyroid UK forum - Pernicious Anaemi...

Pernicious Anaemia Society
22,466 members15,859 posts

Repost from Thyroid UK forum

Welshie77
Welshie77

Dear all,

Grateful for your thoughts and feedback on the following information and test results to consider next steps in helping my mother

66 year old female

Thyroidectomy at aged 17 following goiters and takes 100mg/d levothyroxine

Suffers with many symptoms similar to hypothyroidism: Chronic GI problems and severe constipation, hair loss, feels cold easily, struggles to lose weight despite excellent diet.

Has autoimmune diseases - Vitiligo, Pernicious Anaemia ( Did have previous diagnosis of IBS) My mother does take probiotics, magnesium, glucosamine sulphate, calcium and vitamin D supplements.

2 weeks ago was admitted to hospital following suspected heart attack (Elevated Troponin T 374 - 405). Low blood pressure problems eventually improved and angiogram confirmed no blockages or clots in heart). After one week in CCU, discharged with diagnosis of Takatsubo Cardiomyopathy. Started on Spironolactone and Ramipril. The hospital didn't undertake any thyroid function tests whilst she was admitted.

Did the test below about 2 weeks after discharge and remains primarily symptomatic of hypothyroidism.

Regarding the tests results, her Free T4 is high but her Free T3 is on the lowest margin of the normal range. Also she has a fairly serious Vitamin B12 deficiency and struggles with iron deficiency too. Could this be a problem of T4 to T3 conversion? I've been reading about Low T3 Syndrome which is an issue exacerbated by problems with the GI.

I appreciate any suggestions, GP not very forthcoming about above problems and treating each issue separately. I'm concerned that the chronic symptoms and the recent Cardiomyopathy problems are related to an mistreated or under treated thyroid issue. She's so fed up of her symptoms and the heart attack has worried us all so would like to know how I can best support her.

Many thanks

J

5 Replies
oldestnewest

I know nothing about thyroid problems but is your mother having injections for her B12 deficiency, her B12 is very low?

Some of her symptoms could be caused by lack of, or insufficient, B12. I have some of her symptoms but no thyroid problems.

Just a thought, I'm not a medic.

I can’t comment on the thyroid side of things but oh my goodness, your mums vitamin B12 is extremely low.

You mention that your mum has PA and so at the very least she should be receiving B12 injections once every 3 months from her GP. Given her level is 73 I wonder if she is indeed receiving these?

Chronic GI problems and hair loss are symptoms of B12 deficiency. I would imagine she is also feeling exhausted much of the time? Does she have neurological symptoms such as tingling feet or hands? If you go on the pernicious anaemia society website there is a full symptoms checklist.

As a matter of urgency I would say that your mum needs to have (or have again) loading doses of B12 with injections continuing every other day if she had neurological symptoms, until no further improvement.

Your mum’s folate level should also be tested and likely she will need to supplement this (or folic acid) too.

If having loading doses your mum should also eat a diet high in potassium containing foods for a few months.

Marz
Marz
in reply to JanD236

Folate result detailed above ☺

Gambit62
Gambit62Administrator

As far as I am aware B12 unlikely to be anything to do with the T3/T4.

The thyroid problem obviously isn't auto-immune from the above.

Hypothyroidism can impact on absorption of vitamins and minerals in several ways - from slowing down gut movement (would be associated with constipation) - which can cause lead to bacterial overgrowth ... and there are probably other ways.

At 66 low stomach acidity - irrelevant of hypothyroidism - is a real possibility.

There is a huge overlap in symptoms of hypothyroidism and B12 deficiency. You can find the symptoms of B12 deficeincy here

pernicious-anaemia-society....

B12 deficiency tends to come on very slowly over years or even decades which makes things even more difficult.

Hello Welshie. HU TUK would obviously give good advice on thyroid results but your mother's B12 is extremely low and, with thyroid disease, can affect all systems.

Years of under-treated thyroid disease led to my having heart and BP problems as well as high cholesterol, most of which eventually corrected when treated optimally with natural thyroid medication and B12 injections. Various digestive problems over the years (these can be silent) caused the eventual poor absorption of B12, resulting in neurological symptoms for which I now self inject.

One of the dangers of very low B12 is the rise in homocysteine (and MMA), which results in a higher risk of heart attack and stroke, as well as neuro/psychiatric problems - many clinicians seem to be in complete denial of this !

...................

bmj.com/content/349/bmj.g5226

Here is latest BMJ research document summary above (full document behind a paywall) - bottom of page 2:

"What are the clinical features of vitamin B12 deficiency?

The clinical manifestations of vitamin B12 deficiency (fig 2⇓),3 5-7 9 13 represent the effects of depletion on multiple systems and vary greatly in severity. The clinical manifestations are heterogeneous but can also be different depending on the degree and duration of deficiency.

Mild deficiency manifests as fatigue and anaemia, with indices suggesting B12 deficiency but an absence of neurological features.

Moderate deficiency may include an obvious macrocytic anaemia with, for example, glossitis and some mild or subtle neurological features, such as distal sensory impairment.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features, and risk of cardiomyopathy. However, it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay.4 13"

.......

The Dutch links on the r/h side of this forum explain more about testing, B12 misconceptions and the importance of early and adequate treatment - it might be a good idea to join the PAS if you need more support to get the correct treatment.

stichtingb12tekort.nl/weten...

..........

Two experts, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying vitamin B deficiency in the field for years and both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately :

‘B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ he says. It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.'

‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’

‘Second, those with pernicious anaemia (*known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’

Finally, this research link was originally posted by Diogenes, Dr John Midgley, scientist and advisor to TUK. It highlights the progression of autoimmune thyroid disease through deterioration of gastric mucosa, leading to PA:

journal.frontiersin.org/art...

Good luck welshie in getting early and adequate treatment for your mother...

You may also like...