Help with what to do next : Hi all, I’m so glad I... - Thyroid UK

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Help with what to do next

Scottishsally profile image
Scottishsally

Hi all, I’m so glad I’ve found this forum and I’m really hopeful that you’ll be able to help me. For info I’m a 32 year old female, 8 months postpartum with my second baby and have generally always been fit and healthy. Since having baby number 2 I’ve struggled with being really tired and shaky, feeling weak, losing lots of hair, dry skin, some stomach aches and variable bowel movements and just generally been quite anxious and struggling to sleep. On the recommendation of a friend I contacted the doctor to ask about a thyroid check. I had bloods taken with the following results:

Ferritin: 22 (15-200)

B12: 175 (200-883)

Folate: 4.4 (3.1-20)

TSH:0.87 (0.35-5)

Free T4: 12.1 (9.0 - 21.0)

From these a receptionist from the doctors called me to tell me I’m low on b12 and prescribed ferrous fumarate 3 times a day. I then had further bloods taken the following week which I don’t have results for as still to collect them but when I called they told me the doctor said no further action.

I’m still feeling pretty awful, I have a kind of electric feeling in my hands and feet particularly at night time, I’m still feeling weak and almost like I’m struggling to string words together, particularly as the day goes on. I’ve called back to request further bloods as my grandfather had pernicious anaemia and chrones and I have 2 cousins with coeliac disease all on the same side of the family. They can’t book me in for another 2 weeks so it’s still a waiting game.

From reading on here I’m not sure if my thyroid results suggest anything else going on so I hope someone with expertise can advise although I think I’ll need further tests done first, is that right? Is it right that I should be feeling like this with these levels or is this just new parent life catching up on me?

Thanks so much for any help you’re able to give.

25 Replies
SlowDragon profile image
SlowDragonAdministrator

So your B12 and ferritin are both very low

Has GP tested for Pernicious Anaemia before starting any B12 supplements?

Low ferritin can take many weeks to improve

Are you vegetarian or vegan?

What vitamin supplements were you taking before blood tests...if any?

Folate on low side too

You need vitamin D tested

Plus thyroid antibodies for autoimmune thyroid disease also called Hashimoto’s

Hashimoto’s frequently starts after hormonal changes of pregnancy or menopause

Are you breast feeding?

Thanks for your quick reply....so it was a locum doctor who I spoke to originally and then my own doctor who reviewed the results and prescribed the tablets but I haven’t actually spoken to him, it was just the receptionist who called me to tell me. It’s an absolute nightmare getting an appointment to speak to the doctor just now as there are only 2 in the practice and it’s still phone consultations only. The appointment that I have for further bloods is with the nurse so I guess the best plan would be to try speak to the doctor in advance of that to ask for full thyroid testing.

I haven’t been tested for pernicious anaemia yet, I didn’t actually know that my grandfather had it till I told my mum that I was low in b12.

I’m back to work as a teacher next month for a week before our summer holidays so want to get myself back to normal ASAP! Thanks so much for your help

SlowDragon profile image
SlowDragonAdministrator in reply to Scottishsally

What’s your diet like?

Vegetarian or vegan?

Don’t take any B vitamins (or multivitamins) until GP has tested for Pernicious Anaemia

Perhaps ask advice too on PAS Healthunlocked

healthunlocked.com/pasoc

Pretty healthy diet, I use MyFitnessPal to track as I’m working with a personal trainer but have been struggling to lose weight. Not vegetarian or vegan and I wasn’t taking anything at all before the tablets the doctor prescribed. Now I feel daft for taking them and not insisting on an appointment to discuss but I suppose it’s just natural to just do what the doctor tells you!!

SlowDragon profile image
SlowDragonAdministrator in reply to Scottishsally

Fine to take ferrous fumerate to improve low ferritin/iron

It will take several months to slowly improve iron and ferritin

You can help yourself by increasing iron rich foods in diet

Have you been prescribed B12 supplements?

SlowDragon profile image
SlowDragonAdministrator in reply to Scottishsally

Insist on consultation with GP over your low B12

This is a serious issue

Low B12 symptoms

b12deficiency.info/signs-an...

SlowDragon profile image
SlowDragonAdministrator

Low vitamin levels frequently linked to low thyroid levels

Getting all four vitamins tested and supplement to optimal levels is first step

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin D levels and thyroid antibodies, if they haven’t tested already

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

SlowDragon profile image
SlowDragonAdministrator

So has GP started B12 injections?

You absolutely can not be left untreated with such a low B12

Make another appointment with GP

Insist on testing for Pernicious Anaemia before starting on B12 injections

Also get vitamin D and thyroid antibodies tested

Nope no injections or even mention of injections, just the tablets he gave me and then on further bloods the receptionist just said no further action required which is what sent me here to look for further advice!

I haven’t had vitamin D testing either so think I might get on of the Thriva packages and just get all of this tested at the one time for myself

SlowDragon profile image
SlowDragonAdministrator in reply to Scottishsally

Request GP test vitamin D and thyroid antibodies on Monday along with full testing for pernicious anaemia

I’m on it, thank you so much

shaws profile image
shawsAdministrator in reply to Scottishsally

He is so WRONG to prescribe tablets without first checking that you do not have Pernicious Anaemia!!!!!

shaws profile image
shawsAdministrator

Don't take any medication for B12 deficiency. You MUST have a check first of all to ensure you do not have Pernicious Anaemia. If this is undetected it can cause serious problems. It is called the 'intrinsic factor'.

i.e. intrinsic factor

" a substance secreted by the stomach which enables the body to absorb vitamin B12. It is a glycoprotein.

If we have Pernicious Anemia we HAVE to have regular B12 injections as our stomach cannot absorb it. There are serious consequences if not treated properly.

Scottishsally profile image
Scottishsally in reply to shaws

Thanks for this. I guess if my grandfather had it then that raises the chances of me having it? I’ll be on the phone to the doctor on Monday about testing.

shaws profile image
shawsAdministrator in reply to Scottishsally

My mother also had P.A. but unfortunately her GP stopped her injections as she said her 'blood tests were now fine". Both myself and my sister thought that as 'good'.

Neither my sister or I thought that doctors could make mistakes but this decision by the GP caused my mother's early demise due to her developing stomach cancer due to her jabs being withdrawn.

shaws profile image
shawsAdministrator in reply to shaws

We should get B12 injections due to stomach changes that cannot absorb B12, so taking vitamin supplements wont do.

shaws profile image
shawsAdministrator

I think, if your GP prescribed B12 vitamins before checking for Pernicious Anaemia is shocking - to say the least.

Scottishsally profile image
Scottishsally in reply to shaws

The more we talk about this the more I’m inclined to agree with you...I’ll be on the phone first thing on Monday morning to try and get an emergency appointment with the doctor.Thanks so much for your help

SlowDragon profile image
SlowDragonAdministrator in reply to Scottishsally

Read up about B12 testing here

GP must test for PA with such low result

b12deficiency.info/b12-test...

Great, I’ll have a wee read of that and speak to my doctor about testing on Monday.

From these a receptionist from the doctors called me to tell me I’m low on b12 and prescribed ferrous fumarate 3 times a day.

This would be funny if it wasn't so appalling. The receptionist told you that you have low vitamin B12, then told you that you were being prescribed something for low iron. How is the average patient supposed to make sense of that?

I’m glad now that I’ve come here to ask as something seemed off about it and to be honest I really don’t feel any better yet at all. I’ll be on to them on Monday to push for some actual treatment!

The ferrous fumarate will help your low ferritin but do nothing for your low b12 so not surprising you still feel crap. Hoping gp doesn’t think pernicious anemia is fixed by ferrous fumarate for anemia. Xx good luck

Ferritin: 22 (15-200) --- 4% of the way through the range

According to the NICE CKS (Clinical Knowledge Summaries) on this link :

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Ferritin levels can be difficult to interpret if infection or inflammation is present, as levels can be high even in the presence of iron deficiency.

So, you are iron deficient by that criteria, with a ferritin level below 30 mcg/L.

One thing to be aware of is that ferritin can be anywhere in range but it doesn't tell you what level the serum iron is. Ferritin could be mid-range, for example, but serum iron could be below range, low in range, mid-range, high in range or over the range. Read this link describing why this is important :

healthunlocked.com/thyroidu...

Personally, as someone who (I think) has been low in iron for most of my life, and for most of my life has been untreated for it, I would never supplement iron without having a full iron panel. And I always test a couple of times a year. But once I know my results and I know they show low iron and/or ferritin I treat myself. But I will never supplement so much that any of my iron/ferritin-related results end up over-optimal.

For info on optimal iron/ferritin results :

rt3-adrenals.org/Iron_test_...

On this forum many people try to keep their ferritin at mid-range or a little bit higher.

In the UK we can get an iron panel done with finger-prick testing from here and there are some discount codes available.

medichecks.com/products/iro...

thyroiduk.org/help-and-supp...

Be aware that testing companies offer discounts from time to time, so register with any that interest you and they will email you with their special offers

B12: 175 (200-883) --- Below range

SeasideSusie has some info on getting B12 to an optimal level. You could read her replies to others on the subject on her profile :

healthunlocked.com/user/sea...

Personally, I try to keep my Serum Vitamin B12 at the top of the range or 1000 ng/L or over.

Folate: 4.4 (3.1-20) --- 8% of the way through the range

Optimal for folate is upper half of the range i.e. 11.5 - 20.

You might find this link of interest :

healthunlocked.com/thyroidu...

Thanks so much for this, I’ll have a read through it tonight and be prepared to speak to the doctor on Monday. Fingers crossed!

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