Disappointing hospital visit : I’m absolutely... - Thyroid UK

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Disappointing hospital visit

HypoFrog
HypoFrog

I’m absolutely gutted. I asked to see the specialist endo that was on the list of endos provided by thyroid UK and I didn’t get to see him.

I’m hypo following RAI in 2011 and my health has got much worse within last couple of years or so.

Last test results in the photo. (B12 range 200-900)

So apparently my thyroid results are normal, my B12 is normal, and I don’t have hashimotos because I had a process to remove my thyroid so I just have antibodies which mean nothing. I was told my anxiety might ease now I’ve changed jobs but maybe think about counselling.

I’ve to get a cortisol blood test, calcium, magnesium and TFTs.

I really thought I’d get somewhere today. 😭😭

29 Replies
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ferritin 64 (12-300)

Folate 7.7 (3.9-19.80)

She said she wouldn’t want to higher my levo dose either because one of my symptoms is anxiety.

greygoose
greygoose in reply to HypoFrog

Anxiety is a symptom of under-medication.

The one you saw obviously knows next to nothing about thyroid! And doesn't hesitate to contradict herself! Either your anxiety is due to your job or it's due to over-medication. Actually, it's more likely to be due to under-medication.

And, with a B12 that low, you need testing for PA before you do any supplementing.

Although she is right about the antibodies. They aren't likely to be causing any problems. And, if you had Hashi's before, you don't have it now, with no thyroid.

A blood test for cortisol doesn't serve much useful purpose, you need the 24 hour saliva cortisol test, so that you can see how it progresses throughout the day. And, no point in testing for magnesium, due to the way the body handles magnesium.

But, I agree, she was a dead loss!

HypoFrog
HypoFrog in reply to greygoose

I questioned the B12 twice and she still was adamant that it was fine.

I’d like to make a start with taking B12. I don’t think I’ll get a doctor to do a PA test.

I didn’t have Hashis before. So don’t know why I have the antibodies.

I questioned the blood test for cortisol and she said if that comes back abnormal then we’ll test further. 🤦🏻‍♀️

Ruined my day anyway.

greygoose
greygoose in reply to HypoFrog

Well, if it were me, I'd get the PA test done privately. You need to know if you have PA - for one thing, you get free B12 injections if you have PA.

The thing is, doctors know nothing about nutrients. They don't learn about them in med school. So, we cannot just trust anything they say on that subject.

The antibodies don't matter as you don't have a thyroid. They could be for other reasons. I wouldn't lose any sleep over those, if I were you. :)

Oh, and the cortisol... When she says they will 'test further', they do not mean a 24 hour saliva test. They mean a test for Addison's. Because, for a doctor, you either have Addison's, or you have Cushing's, and if you don't have either of those, there's nothing wrong with your adrenals! It's all black or whiet, no shades of grey. They do not believe in Adrenal Fatigue. We patients know it exists. But, you won't get any help with it on the NHS, I'm afraid.

HypoFrog
HypoFrog in reply to greygoose

Yes... you’ve just reminded me that she mentioned Addisons. 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️

greygoose
greygoose in reply to HypoFrog

lol I though she would!

shaws
shawsAdministrator

No wonder you are completely flabbergasted that you've had a consultation with an expert yet are left floundering.

I am also more sorry for your because you had RAI so don't even have a thyroid gland that produces a low level of hormones.

Many doctors and endocrinologists seem to have lost that very important and vital necessity (sympathy) for the person before them and seem to be prevented from giving their best to the patient in front of them as they must be very badly educated.

For some reason - why are they so ignorant of how we feel when all they take notice is a TSH alone (it seems to me). There is clear ignorance as to the need for our Free T4 and Free T3 to be in the upper part of the ranges. If too low the need to prescribe a combination of T4/T3 on a trial basis.

I must also state I'm not medically qualified but had to also diagnose myself.

The training of doctors who want to be endocrinologists has to be changed and take note that we are 'human beings' not mechanical bodies and we are consulting them as they are 'supposed to be educated' upon dysfunctional thyroid glands and, in theory, we should not be searching the internet for a solution. Thankfully, there is otherwise I wouldn't be better myself.

The problem, too, is that some doctors might prescribed 'other' thyroid hormone replacements, (i.e. NDT or T3) if patient is still unwell. Both have been withdrawn from being prescribed so there is no longer options.

Many professionals have no idea of how very unwell we can feel when our prescriptions of thyroid hormones aren't improving our health.

SlowDragon
SlowDragonAdministrator

Well that was complete waste of time then

Presumably this was NHS appointment?

Recommend you work on improving low vitamin levels

NHS only tests and treats deficiencies in vitamins

We need optimal vitamin levels

So you will need to self supplement

You need to test vitamin D, folate and ferritin

B12 clearly too low

Have you had coeliac blood test?

If not suggest you buy one online too before considering trialing strictly gluten free diet

Getting vitamin levels optimal can improve conversion of Ft4 to Ft3

SlowDragon
SlowDragonAdministrator

Your conversion rate is currently appalling

Ft4 is 51% through range

But Ft3 pitiful at 6.9% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

HypoFrog
HypoFrog in reply to SlowDragon

It was NHS yes.

I can’t believe it. She was very adamant too. I thought like when I questioned and mentioned the advice I’d been given here such as my conversion rate being low, she just didn’t acknowledge or care about that because the test results were ‘normal’.

It’s shocking.

SlowDragon
SlowDragonAdministrator in reply to HypoFrog

Roughly where in the UK are you?

Work on improving low vitamin levels

Trial strictly gluten free diet

But your going to at least need dose increase in levothyroxine

Likely addition of small dose of T3 alongside levothyroxine once all vitamins are optimal

Espeegee
Espeegee in reply to HypoFrog

As Tom Jones once sang "It's not unusual ..."

SlowDragon
SlowDragonAdministrator

Low B12 and low folate

recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement and a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

cytoplan.co.uk/vitamins/vit...

Recommend getting vitamin D tested ASAP

vitamindtest.org.uk

HypoFrog
HypoFrog in reply to SlowDragon

Thank you. I supplement already for vitamin D so I know that’s ok.

Didn’t really want to do this on my own. I really thought I’d get somewhere today. 😭

SlowDragon
SlowDragonAdministrator in reply to HypoFrog

So you need to see different endocrinologist

PM me

SlowDragon
SlowDragonAdministrator in reply to HypoFrog

How much vitamin D are you taking

When was it last tested

Do you supplement vitamin K2 and magnesium too

HypoFrog
HypoFrog in reply to SlowDragon

I take 4000IU a day and last test was August same as these.

The result was 130 ish I think without checking.

I don’t supplement K2 or magnesium.

She wants me to get magnesium and calcium tested plus cortisol so will see what they say.

SlowDragon
SlowDragonAdministrator in reply to HypoFrog

Magnesium test is extremely unreliable test

Cortisol and DHEA saliva test will show if cortisol diurnal variation is up the creek

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

HypoFrog
HypoFrog in reply to SlowDragon

They’re only testing cortisol in a morning blood test which I questioned but she said if that’s abnormal then we do another test.

Is there much point in testing cortisol in a morning blood test?

SlowDragon
SlowDragonAdministrator in reply to HypoFrog

NHS don’t do saliva testing

Cortisol blood test needs to early morning

24 hour urine collection cortisol test is likely the next test on NHS

SlowDragon
SlowDragonAdministrator

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

HypoFrog
HypoFrog in reply to SlowDragon

Yes always do my tests that way.

B12-are you a vegan?

If not then it should be higher than that.

Folate should be in the upper quarter of range for your body to fully use the b12 you do have, low folate can cause psychiatric symptoms and anxiety. Mine used to be low and it was not fun...

I definitely agree that testing would be wise before any supplements (even one dose can skew results for many months).

Medichecks do good b12 tests including the active b12 test which shows how much is available for use, the NHS usually only test serum b12.

Saying that the PA check/intrinsic factor test has a 40-60% false negative so even if you test negative, you might still have it. Or there are other reasons that you may not be absorbing it. Mine is caused by hypochloridria.

Are you having any of the neurological symptoms that could be caused by b12 deficiency?

I'm at last on daily b12 injections after 32 years of low tests, it was believed that sublingual b12 would sort my deficiency out but it just raised my levels sky high and my symptoms still deteriorated fast last year.

I'm now much better.

Long term b12 deficiency can lead to thyroid problems.

Ferritin of around 100 is optimal, but never take iron without supervision/retesting as it can be dangerous.

Not sure of the rules of this site regarding links etc but I can reply with b12/ferritin info if you are interested and if it's allowed.

Correction, my b12 testing was done by nutris viapath and not medichecks.

HypoFrog
HypoFrog in reply to Thenightowl

Hi. I’m not vegan.

Gosh don’t really want to pay for an intrinsic factor test if it could show a false negative.

Seems to be crossover with some b12 and hypo symptoms but do have lack of concentration, brain fog, bad memory. But I have jittery legs like they’re weak, trembling hands. I’ve on occasion had strange neuropathy nerve pains in 2 areas of my body sharply at once but not recently.

I’m interested in the info yes please. People have posted links so think you’re fine. Thank you

Thenightowl
Thenightowl in reply to HypoFrog

I had a finger tremor before injections, normal again now thank goodness.

If left untreated, the damage in the brain and/or spinal cord can be permanent. I highly recommend the Facebook page 'b12 wake up' which is affiliated with the b12 society and has many files with a ton of information. I suggest you join if you can and read through them, I don't know what I would be like now if I hadn't have had their help. Doctors often know very little about b12, and in many cases are trying to take people off injections, even people who have PA and should have them for life, or reducing the frequency so that a lot of people are now self injecting.

b12-institute.nl/caution-no...

HypoFrog
HypoFrog in reply to Thenightowl

Thank you, I’ll take a look

Hey there again ;

I'm so sorry your appointment was a waste of time, mine was as well back in 2018, and that's when I decided to take matters into my own hands and started getting well by myself.

It's not a walk in the park and does take time but by then I was retired and virtually housebound and couldn't face being let down any further by people I had put my trust in.

I think I've detailed previously everything I started and continue to do, and I am much improved.

I did have this early morning blood test for cortisol, and I did have the short synacthen test for Addisons Disease.

I did read in Dr P 's book that the SS test it's not sensitive enough and rarely picks up adrenal exhaustion - so after being told " I as fine " after these two tests, I started supplementing adrenal glandular and still take these every day along with my vitamns and minerals and Natural Desiccated Thyroid.

RAI can wreck vitamins and minerals and it can also be taken up by other glands and organs within the body : the thyroid and adrenals work in tandem and I believe it makes sense to supplement and support both these essential glands.

HypoFrog
HypoFrog in reply to pennyannie

Thank you. 😊

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