Update to post of ' Can anyone help please. - Thyroid UK

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Update to post of ' Can anyone help please.

debsmitch60 profile image
30 Replies

This is a the results and update of what the blue horizon doctor said. Still none the wiser. He has never taken any thyroid medications at all. And although his tsh is in range most ot the time it's really low I think know. And whst to do about it including the high cortisol. Thank you and if you need to see the other results they are on my previous post.

Thank you in advance x

UPDATE

My husband just had some tests back from Blue Horizon.

I will add the Doctors comments and put the results up. Any comments very welcome.

Thank you X

Here are comments from our resident doctor regarding your results:

The free T4 level is low. In the presence of a normal thyroid stimulating hormone level (TSH), and normal free T3 level it would not surprise me to learn you are taking liothyronine (T3) instead of levothyroxine - is this the case? If you are taking a form of thyroxine medication already, you may need to adjust your dose – a discussion with your usual doctor would be sensible. If not, I also suggest you make an appointment to see your doctor – at least surveillance of thyroid function would be wise, as it would seem in this scenario that an underactive thyroid gland might be developing.

The serum cortisol is on the high side. Cortisol rises in response to stress, but it will also rise in those taking steroids (even as creams or asthma inhalers). Persistently raised cortisol levels may indicate underlying Cushing's disease, but further testing would be required to diagnose (or rule out) this condition. Repeat testing would be advisable to determine whether it is a sustained rise, and you may wish to consider 24 hour testing of saliva cortisol levels (via a home testing kit).

The active vitamin B12 level is low. This suggests that you are deficient in vitamin B12. Persistently low Vitamin B12 levels can lead to Pernicious Anaemia (PA), a state of deficiency of the red blood cells in which there is reduced quality and number. Characteristically, the red blood cells are

are enlarged in this state (if the deficiency is severe and longstanding). Vitamin B12 is commonly found in many foods, particularly meats. Deficiency can develop if intake of the vitamin is reduced or if absorption from the gut is impaired. Poor absorption owing to a deficiency of Intrinsic Factor (IF) is the underlying reason for PA. Vitamin B12 deficiency in the longer run can lead

to nervous system disorders – with sensation changes, loss of power or co-ordination, gut disorders and (rarely) dementia or mental illness. Lower level deficiency has been associated with a range of symptoms such as fatigue, memory impairment, irritability, depression and personality changes. Please discuss this finding with your usual doctor as further investigation (including testing homocysteine and methylmalonic acid (MMA) levels), and supplementation, may be advisable.

Two of the substances in the sample (ferritin and folate) have been affected by haemolysis (destruction of red blood cells).

Sometimes, slow drawing of the sample into the tube, or a delay in processing, can result in damage of the red blood cells. Repeat sampling will be necessary I'm afraid if these levels need to be known - please contact our office if this is the case.

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debsmitch60
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30 Replies
Jaydee1507 profile image
Jaydee1507Administrator

These look like the same results as before?

Have you spoken to GP about the low B12 and what did they say?

debsmitch60 profile image
debsmitch60 in reply toJaydee1507

They are new ones from Blue Horizon. The others are tsh from over a few years. We only got them yesterday so no not had a chance until Monday morning. The odd thing is that he eats well and quite a bit of meats. Also it's odd that the T4 is so low.

Jaydee1507 profile image
Jaydee1507Administrator in reply todebsmitch60

So what has happened about speaking to your GP regarding the previous results?

You had some good suggestions here: healthunlocked.com/thyroidu...

What is the update on where you're at now?

debsmitch60 profile image
debsmitch60 in reply toJaydee1507

We spoke to the gp and he said try the treatment for Bile Acid Malabsorption and we didn't mention the other results that we just found and saw as we thought we would buy a good thyroid test which with Christmas and New Year was hard to send and had to wait. I'm really ill myself with hypothyroidism and adrenal insufficiency and because my husband isn't himself I'm having to try and sort everything. I also have an adult son living with me with aspergers which put altogether is hard. I myself was in A&E for 6 hours yesterday due to constantly being ill with my issues. Sent there by the GP. Plus only got the blue horizon thyroid tests yesterday.

Jaydee1507 profile image
Jaydee1507Administrator in reply todebsmitch60

As you've got a lot going on with both of you, why not just focus on the low B12 for now. Suggest you make a new appointment with GP to discuss the B12 results and push for injections. Come back to thyroid once hsi low B12 is sorted.

debsmitch60 profile image
debsmitch60 in reply toJaydee1507

Thank you Jaydee1507, Yes i will ring the gp on Monday and that's sounds like a plan. I need to try and put a post up of my own later but struggling so we will see x

greygoose profile image
greygoose

Looks to me like a possible pituitary problem because that TSH is disproportionately low compared to the low FT4 - it should be higher.

That would tie in with the FT3 being higher than the FT4 - which is not normal. A failing thyroid often starts producing more T3 than T4 to keep you alive.

And if your thyroid is failing, your thyroid will step in and take up the slack, which could cause the high cortisol.

And low thyroid hormone levels can cause low stomach acid making it difficult to digest food and absorb nutrients - hence the low B12.

The B12 needs further investigation followed by treatment immediately, because it is dangerously low. B12 that low can cause permanent neurological damage. He needs tested for Pernicious Anemia ( which causes low B12, not the other way round!). And life-long B12 injections if found to have it.

But for the thyroid and adrenals, I should think you need to watch and wait for a while, to make sure this isn't a blip. If further testing in a couple of months gives the same sort of results, then he needs investigating for a pituitary problem. Which won't be easy because GPs don't even know where the pituitary is! You will need a pituitary-friendly endo. Which you could start looking for now, in case of need.

debsmitch60 profile image
debsmitch60 in reply togreygoose

Thank you greygoose that makes sense. I will ring the gp on Monday and discuss it all especially the low B12 x

greygoose profile image
greygoose in reply todebsmitch60

I very much doubt if you'll get any sense out of him about the thyroid. The TSH is in-range so for a GP there's no problem. Doubt if he's ever even heard of Central Hypo (pituitary/hypothalamus problems). But, yes, the B12 is urgent.

debsmitch60 profile image
debsmitch60 in reply togreygoose

Well yes i think you are very right. I will ask him to refer him and give him all his past results and these new ones. And yes i agree the B12 is very urgent. Can you tell me what the gp should do ie injections or tablets please? Also shall I still ask him to test for Pernicious Anaemia regardless? x

greygoose profile image
greygoose in reply todebsmitch60

Yes, ask for the test. But if you want to know more about Pernicious Anemia and all the ins and outs, I would suggest you ask on the PA forum, because they know far more about it than I do! :)

healthunlocked.com/pasoc/po...

debsmitch60 profile image
debsmitch60 in reply togreygoose

Thank you so much. Also is it worth me giving B12 supplements now or do you think the gp will definitely want a B12 blood test? Thank you for the link I will have a look x

Jaydee1507 profile image
Jaydee1507Administrator in reply todebsmitch60

Best not to start any supplements until GP has investigated properly, otherwise it can skew his results for the next 3 months. Come back here if GP is difficult.

debsmitch60 profile image
debsmitch60 in reply toJaydee1507

Thank you Jaydee1507 I really appreciate the advice and I will thank you x

greygoose profile image
greygoose in reply todebsmitch60

If he starts B12 supplements now, it will skew the results of any further tests the doctors might want to do - and it really should be insisted that he does do further testing. Besides, with B12 that low, supplements probably won't help much. He needs injections. Backed up with a good B complex.

debsmitch60 profile image
debsmitch60 in reply togreygoose

Thank you greygoose I will not attempt to give him any. So the gp will not accept the blue horizon tests? Should he suggest the injections? Thank you so much x

greygoose profile image
greygoose in reply todebsmitch60

With such a low level, any decent GP should automatically suggest them. But if he doesn't, give him a nudge! :)

debsmitch60 profile image
debsmitch60 in reply togreygoose

OK thank you we will see. I will definitely point out and show these test results. Have a lovely day x

greygoose profile image
greygoose in reply todebsmitch60

Thank you, you too. :)

SlowDragon profile image
SlowDragonAdministrator

B12 is dire

Great pity folate and ferritin are haemolysed

Are they sending replacement kit

Has GP run testing for Pernicious Anaemia yet

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

He is likely going to need LOADING doses of B12 injections

Suggest you ask advice on Pernicious Anaemia forum here

healthunlocked.com/pasoc

His thyroid levels MIGHT recover once his extremely low B12 levels are sorted

Obviously need to know what folate and ferritin levels are

Vitamin D needs improving too

debsmitch60 profile image
debsmitch60 in reply toSlowDragon

Hi SlowDragon yes it is bad isn't it and he has lots of symptoms. Haven't spoken to the gp yet as only got the tests back yesterday. I will ring Monday and tell him and ask him to do that. I hsve emailed blue horizon but they are closed so I will also ring them Monday as we need a replacement test as we need to know what they are too. Thank you for the links I will look into them. And I will give him some vitamin D too x

SlowDragon profile image
SlowDragonAdministrator in reply todebsmitch60

GP will want to run their own tests for B12

Request they also test folate and ferritin

A GP won’t recognise an Active B12 test as these are still only available privately

NHS test will be Serum B12 - range is typically 180-780.

Many people have symptoms of low B12 if result is under 300

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Great reply by @humanbean on B12 here

healthunlocked.com/thyroidu...

debsmitch60 profile image
debsmitch60 in reply toSlowDragon

Thank you SlowDragon, I have saved the link of @humanbean and also one of your great replies. Yes that does seem a very wide range but again with thyroid I think they should go by symptoms too. He has pretty much all the symptoms of low B12 and i definitely think his thyroid is failing x

SlowDragon profile image
SlowDragonAdministrator in reply todebsmitch60

We’ll see what thyroid levels are like 2-3 months after getting B12 treatment

If he has Pernicious Anaemia this autoimmune so make other autoimmune diseases more likely

But low B12 is much more common as we get older due to low stomach acid

Is he on any long term medication? Like a PPI for example…..omeprazole or similar…..these significantly lower B12 …….As can Metformin

debsmitch60 profile image
debsmitch60 in reply toSlowDragon

Yes thank you. And he has been diagnosed with Multiple myeloma since 2011 when it was smoldering and then had stem cell transplant and high dose chemotherapy in 2014. Since then he has been on a drug called Lenlidomide as it was a trial and since then he has been in a remission. Multiple myeloma is incurable so he has bloods taken every 8 weeks to keep a check. It used to be every 4 weeks. No he isn't on anything other than Zapain for his knees and ankles.

Another thing that has been happening for a while is his nails keep breaking and splitting upwards towards his nailbed.

And more recently he has been given medication called Colesevelam as he has had really bad ongoing diarrhoea for well over a year. Been tested all ways but palmed off with daily lopramide until they weren't working and the gp thought, oh he had his gallbladder out years ago but wondered if it was bile acid malabsorption and this treatment seems to be working x

SlowDragon profile image
SlowDragonAdministrator in reply todebsmitch60

my.clevelandclinic.org/heal...

General physical symptoms of vitamin B12 deficiency can include:

Feeling very tired or weak.

Experiencing nausea, vomiting or diarrhea.

SlowDragon profile image
SlowDragonAdministrator in reply todebsmitch60

also

AI Overview

Learn more

Yes, lenalidomide (Revlimid) can cause B12 deficiency in patients with multiple myeloma or other conditions:

Explanation

Mechanisms

Lenalidomide can disrupt the kidneys' ability to absorb B12, and can also generate autoreactive antibodies that can lead to B12 deficiency.

Symptoms

B12 deficiency can occur in patients with multiple myeloma and can worsen the disease

debsmitch60 profile image
debsmitch60 in reply toSlowDragon

Thank you do much SlowDragon, I will mention it to the gp later x

Lottyplum profile image
Lottyplum in reply todebsmitch60

Make sure he takes D3 and K2! I use the BetterYou D3/K2 spray as 3 or 4 sprays much easier! I've found them cheapest in Amazon

debsmitch60 profile image
debsmitch60 in reply toLottyplum

Thank you so much Lottyplum, I will have a look x

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