Thyroid Goitre increase/feeling rubbish. - Thyroid UK

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Thyroid Goitre increase/feeling rubbish.

southernb profile image
16 Replies

Hi,

I’m 47, 8 years ago I had an awful virus, then developed a thyroid nodule on the left side of thyroid gland, I’ve requested to get this re-checked in the meantime, in 2021, they put a camera down my throat & did a scan & said it’s fine. I did blood tests through medichecks but not for about 3 years. I went to see a GP in August as I’m sick of constantly feeling rubbish, I also noticed that my thyroid nodules have increased in size, the GP said she woukd refer me within 2 weeks as could tell by my notes my thyroid nodule has increased. At the start of the week I still hadn’t had my urgent hospital referral, I complained to my doctors & got a hospital appointment last Thursday with an ENT consultant. I was literally in the appointment for a minute, they didn’t put the camera down my throat, but said I need a scan & a FNT biopsy within 2 weeks, they said they can see my goitre has grown from 1.5cm to 4cm.

When I saw my GP I basically told her I’m sick of feeling like crap, I have to work full-time and I’m struggling with tiredness/joint pain/brain fog etc… The GP ordered some blood tests, I asked for thyroid blood tests but she only ordered one. My ferritin levels were very low (13) they retested this, the GP called me & said I’m anaemic that’s why I feel tired, do I want a prescription iron supplement or will I buy my own? I brought my own, Three Arrows Heme, plus I’m taking Vitamin D & other supplements.

I’m just a bit lost now, I did say to the ENT consultant I feel very self conscious of my goitre & I don’t want it to keep growing!! He said as it’s bigger they might remove it, but we need to check the scan/biopsy results first. I’ve attached my one thyroid blood test result, which probably isn’t very helpful.

I’m just looking for done advice as I feel the GP/Consultant don’t have a clue about thyroid issues!

Plus I’m really nervous for the biopsy.

Any advice really appreciated please, I just want to feel well again, I’m fed up of struggling.

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southernb
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16 Replies
pennyannie profile image
pennyannie

Hello Southernb :

A ferritin of 13 is technically iron deficient anemia and needs further investigations before supplementing anything:

It should have been flagged on the NHS doctors report with advice as to the next step through the NHS -

possibly a colonoscopy and endoscopy but at the very least an iron panel should be run before anything is prescribed and likely you may get an iron infusion as you must be feeling awful.

I'm not up to speed on goitres - so shall leave this here - hopefully someone else will pick you up who is better informed.

southernb profile image
southernb in reply topennyannie

Hi Pennyannie, did have a full iron panel test, I’ve only posted the ferritin one. I had a FIT test which has come back negative. I only had a telephone call with the GP who was pretty useless & said to take iron tablets.

pennyannie profile image
pennyannie in reply tosouthernb

There is nothing here - ask for an iron infusion if investigations proved negative - as it does take some time building up ferritin stores - with NHS supplements generally causing stomach upsets.

Any iron bisglycinate product will be kinder on your stomach if this is an issue for you - there are several OTC to choose from I purchased Gentle Iron - only realising afterwards that it wasn't the only option in this category, that would be kinder on my stomach.

southernb profile image
southernb in reply topennyannie

I’ve started taking these, so far, I’ve had no stomach issues, plus feel like my anxiety symptoms have eased. The GP who called me was useless, it’s impossible to get an appointment let alone ask for an iron infusion, but I will try. Thanks for your advice

Ok
pennyannie profile image
pennyannie in reply tosouthernb

Good - yes I think this brand has been well recommended on the forum - with some finding out of stock when searching for it -

Okey doke - fingers crossed this builds up and helps a bit :

I gave up and self medicate as the stress trying to get help and advice simply exacerbated my symptoms - so now I look after myself - with a yearly full thyroid panel and DI Myself.

SlowDragon profile image
SlowDragonAdministrator

My ferritin levels were very low (13) they retested this, the GP called me & said I’m anaemic that’s why I feel tired, do I want a prescription iron supplement or will I buy my own? I brought my own, Three Arrows Heme, plus I’m taking Vitamin D & other supplements.

Question is WHY are vitamin levels so low

Are you vegetarian or vegan?

Pre or post menopause?

You need FULL thyroid testing, TSH, Ft4 and Ft3 plus both TPO and TG thyroid antibodies

And coeliac blood test

What were most recent vitamin D, folate and B12 results and ranges

Are you taking any B vitamins, if yes….what exactly

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Blood tests

Test vitamin levels at least annually

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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 all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Randox FULL thyroid test including both thyroid antibodies just £29

Test at home or in clinic

Order via Amazon

randoxhealth.com/en-GB/at-h...

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

southernb profile image
southernb

Hi,

My diet is pretty much vegetarian , but I do eat chicken, no other meat. I am pre menopausal I believe.

I will do a private test for thyroid/vitamin levels, I can’t do the finger prick test (it’s impossible for me to get enough blood)!

Here are my B12 results.

I am taking Three Arrows iron repair plus & Better You, Multi Vit daily oral spray.

I did ask for thyroid tests to be done but they only did one, I questioned the results when I was told I’m anaemic & they said my thyroid test was normal!

Thanks for your advice, very appreciated

Yrs
pennyannie profile image
pennyannie in reply tosouthernb

Hey there again - you should make sure when you reply to someone - presumably you meant SlowDragon - that you reply within their post using their Reply icon as then their name comes up in print as you write and they are notified you have sent them a message - and will reply :

You can also type - @ - directly before starting to type their name and you then get offered a drop down list of potential members matching what you type - eg -  SlowDragon

Looking at this result - i think your B12 looks very low and you likely need testing for Pernicious Anemia - folate will likely be low as well - and do you have a vitamin D -

I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D up at around 125.

SlowDragon profile image
SlowDragonAdministrator in reply tosouthernb

Better You, Multi Vit daily oral spray.

Is this a multivitamin or vitamin B complex

Either way ……B12 is EXTREMELY LOW

Request GP test for Pernicious Anaemia before starting either B12 injections via GP or GP may prescribe supplements

or more likely you will need to self supplement to maintain GOOD vitamin levels

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

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...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

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

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

southernb profile image
southernb in reply toSlowDragon

SlowDragon

Hi,

The better you are multivitamins (attached), I’ve ordered the b12 drops you’ve suggested & will get a b complex supplement too.

My GP is awful, I’m going to get some private blood tests for the anaemia & I need to test my thyroid function/vitamin levels.

I’ve only been taking the iron suppleness for a week, but feel like my anxiety has improved, but I still feel exhausted.

I should have my goitre biopsy soon, I wonder if there’s any other way to shrink my nodules.

Thanks for your invaluable advice, it’s really appreciated as every GP I’ve spoken to does not have a clue!

Yed
SlowDragon profile image
SlowDragonAdministrator in reply tosouthernb

Suggest you stop this as it contains iodine not recommend unless tested and deficient

iodine can make thyroid issues much worse

Get full thyroid and vitamin testing done at least a week after stopping this

SlowDragon profile image
SlowDragonAdministrator in reply tosouthernb

I wonder if there’s any other way to shrink my nodules.

Assuming you are hypothyroid , and most likely autoimmune …..you should see improvements as you get started and slowly increase up on to decent level of levothyroxine

tiptopnot profile image
tiptopnot

I did have biopsy myself not long ago and the only difficulty I had was trying not to gulp as my nodule moves when I swallow. I felt so much relief afterwards as size of my nodule reduced after draining. It filled up couple of days later though. I know everyone loves NHS but there is no competition between gps as they are getting their salaries no matter what. They should get a salary depending on stars they get from their patients 😆

Insomania profile image
Insomania

Have a read of my profile.

Three years ago with advice from this forum, I had to push so hard to get a GP referral to haemotology.

While I waited I got a iron infusion at local private hospital. Made a positive difference. Then by the time I saw the haemotology consultant two months after the infusion, my ferritin was nose diving again. I have iron deficiency anaemia. I get an NHS iron infusion when ferritin is 30. I have full iron panel every three months and with treatment I ‘maintained’ well for 18 months.

Even with goitre, low in range (40-50%) FT4 & FT3, low iron, D and B12, and numerous hypo symptoms the best I could get from NHS was anti-depressants, which I refused. I went private and have been on NDT Armour for 15 months.

My FT3 got up to 70%! But I’m still not there because my iron has declined (possibly due to Covid twice earlier in the year), which has impacted the FT3 bringing it down quite abruptly to 40% again. I’ve had an NDT increase to 1.5 grains which has helped. My NHS Haemotology Dr agreed to another iron infusion (ferritin is 46) and I’m waiting for the appt to come through.

Send me a message if you want to know the private thyroid Dr I see via telehealth.

southernb profile image
southernb in reply toInsomania

Insomania thank you for your advice, did you get your goitre tested, has it grown since you first noticed it?

My GP is awful, was looking at a private iron infusion, but it’s so expensive. I feel a bit better after taking iron supplements already.

I think I should see a private thyroid doctor as I’ve only seen a ENT consultant to far, my last appointment lasted literally 1 minute, but he has referred me for a scan/biopsy.

I’ll have to Google NDT Armour as not heard of that before.

Insomania profile image
Insomania in reply tosouthernb

Yes, I was on 2ww pathway when goitre was initially discovered when I saw a healthcare professional (actually a physio) for the first time in 12 months due to pandemic. It’s a multinodular goitre. I’ve had it looked at twice. All nhs can offer is surgery.

My goitre has noticeably reduced in size on NDT, people have commented. Though I also take ALL the supplements the thyroid Dr recommends.

I have to be careful with iron supplements because I get digestive issues. The haemotology Dr referred me to gastro and I had endoscopy and colonoscopy, only a Hiatal hernia was found but I have no symptoms of this.

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