Welcome any assistance to help my mum

[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 18 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)

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

[Aurealis]

Hi Welshie77, your Mum isn’t converting T4 to T3 very well so although her TSH and T3 are in range her T3 is very low in the range and she is symptomatic for hypothyroidism. Cardiomyopathy is a known symptom of hypothyroidism. My understanding (though I’m not medically trained) is that it is reversible once sufficient thyroid hormone / the right thyroid hormone is taken.

Is her B12 deficiency being treated adequately now? Has the hospital referred to endocrinologist? And a haematologist?

Good luck, she needs your help to try to sort these medics out on her behalf until she feels stronger.

[SlowDragon Administrator]

She may benefit from strictly gluten free diet. Although her thyroid antibodies are within range, even after Thyroidectomy Graves patients can find gluten free diet helps

100mcg is not a large dose. She may do better with adding small dose of T3. Many thyroidectomy patients do

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many and that current treatment following thyroidectomy is often inadequate

rcpe.ac.uk/sites/default/fi...

Her B12 is obviously seriously under range. Is this being treated

[Pixielula]

Low B12 can cause very high levels of homocysteine, this in turn puts her at great risk of unexplained heart attack and stroke. I would re post her results on the PA website and get the brains over there to give advice. Her b12 is seriously low if they are giving her shots she needs them more frequently. Drs know diddly squat about b12 deficiency and the serious side effects are. I’m no expert but I only learnt after I had my unexplained LAC stroke 4 years ago

[Marz]

b12deficiency.info/signs-an...

the above link takes you to the signs and symptoms of B12 Deficiency - scroll down in the link. As you can see so many overlap with being Hypo ... How often does your Mum have B12 injections ? It is crazy her B12 is so LOW.

[rosetrees]

I would say your mum needs to do some serious work on healing her gut. Her gut issues could explain why she doesn't seem to be absorbing vitamins properly.

Things to consider include slippery elm gruel, digestive enzymes and probiotics. You take all 3 - although you start them one at a time. Always start new supplements one at a time, in case of adverse reactions.

Everyone above has addressed the other issues she needs to look at.

[Welshie77]

Thank you all for your advice and information. My mother does take probiotics, magnesium, glucosamine sulphate, calcium and vitamin D supplements. Will arrange for an appointment with GP and request referral to see Endo.

[Marz in reply to Welshie77]

How often does she have her B12 injection - was my question higher up The usual protocol is every 12 weeks - but your Mum needs it more often so .... I self inject weekly and sometimes more !

[Welshie77 in reply to Marz]

She doesn't have any vitamin B12 treatment but will ask GP about it today

[Marz in reply to Welshie77]

If your Mum has Pernicious Anaemia she must have regular injections and for life - please let me know what the GP says.

[Marz in reply to Welshie77]

What did the GP say ?