Has anyone had this? Desperate for answers - Thyroid UK

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Has anyone had this? Desperate for answers

Bobble123 profile image
13 Replies

for about 2 months now I can feel my thyroid is swollen -

I had blood tests by doctors and confirmed that my hormone levels are normal and thyroid is functioning.

I then had an ultra sound which said that my thyroid was ‘diffuesly enlarged’ and that I also had ‘tiny cysts’ I have now been referred to the endocrinologist which can take around 2 months, I know I need to be impatient but my anxiety is crazy, convincing myself that I’m going to die and that I have thyroid cancer I am totally consumed with worrying.

The doctors didn’t seem concerned, but also don’t seem to know why my thyroid is enlarged - sure it’s because I’m worried about it but I feel like it feels bigger already.

I also recently have been getting dizzy spells and super tired (although I am a mum to a toddler)

has anyone else had similar? Or have any advice or ideas I’d be so greatful, I feel so alone with this.

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Bobble123
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13 Replies
SlowDragon profile image
SlowDragonAdministrator

I had blood tests by doctors and confirmed that my hormone levels are normal and thyroid is functioning.

Can you add actual results and ranges

What time of day was test done

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)

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if possibly autoimmune

Very important to test vitamin D, folate, ferritin and B12

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Bobble123 profile image
Bobble123 in reply toSlowDragon

my blood tests were done at 2pm and I had eaten as normal that day as wasn’t told otherwise. I have attached photo of my thyroid results.

My vitamin D and all the others you mentioned in that paragraph were all tested and came back normal.

(I do have a vitamin D deficiency but take vitamins daily for this so this is why that test came back normal)

My confusion was that even after my ultra sound my doctor didn’t know what was causing it as in his words my thyroid blood test came back normal ( a couple of years ago it came back borderline) which is why he has referred me to the endocrinologist at hospital, thank you for replying I really appreciate it!

Thyroid function test
SlowDragon profile image
SlowDragonAdministrator in reply toBobble123

TSH 3.69 mIU/L (0.27 - 4.2) 

TSH 87.0% so at top of range

Would have been higher if tested early morning with only water to drink between waking at test

Quite likely TSH would have been over range

Free T4 (fT4) 13.5 pmol/L (12 - 22) 

Ft4 only 15.0% through range…..so very low

Results strongly suggest your thyroid is struggling

With low Ft4 vitamin levels are likely low too as direct result

Ultrasound suggests probably autoimmune

Request another thyroid test in 6-8 weeks…..including Thyroid antibodies test for autoimmune hypothyroid disease

Book early morning test

Starting levothyroxine - see flow chart

Need two tests with TSH over range

gps.northcentrallondonccg.n...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

No folate, B12 or ferritin results?

Request these are included at next test too

How much vitamin D are you taking

You need to retest vitamin D twice year when supplementing. May need higher dose in winter than summer

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

GP will only test vitamin D once every 2 years

Bobble123 profile image
Bobble123 in reply toSlowDragon

Serum Vitamin b12 350pg/ML

Serum folate level 13.0ug

Serum ferritin level 27ng/ml

Vitamin d3 60nmol

Do you think that when I see the endocrinologist that they will notice this or request this as you’ve said?

SlowDragon profile image
SlowDragonAdministrator in reply toBobble123

What’s range on B12 and especially folate result?

B12 definitely too low

Folate probably low

Low B12 symptoms

b12deficiency.info/signs-an...

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

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...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

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

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 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...

Bobble123 profile image
Bobble123 in reply toSlowDragon

‘Serum vitamin B12 level 350 pg/mL [197.0 - 771.0]

Serum folate level 13.0 ug/L; Please note change in the reference range for Folate

effective from 08/10/2018.

<3 ug/L suggestive of folate deficiency.’

Thank you so much for replying with all of the information, you’ve been really helpful!

Do you still think from this that it could be Hashimoto's? Also unsure if I should start what you have recommended now or wait until after my appointment as it may appear normal when I see them if I have taken the relevant supplements if that makes sense?

SlowDragon profile image
SlowDragonAdministrator in reply toBobble123

GP won’t see B12 or folate as low so unlikely to offer further testing so you could start B12 and add vitamin B complex week or so after

Low Ferritin, GP should run full iron panel

Plus request GP retest thyroid in another 6 weeks including thyroid antibodies

Get your vitamin D tested yourself

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator in reply toBobble123

Serum ferritin level 27ng/ml

Ferritin is deficient and will make you feel extremely fatigued

Request GP do full iron panel test for anaemia

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

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

Great replies from @FallingInReverse

re ferritin and Three arrows

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

SlowDragon profile image
SlowDragonAdministrator

My vitamin D and all the others you mentioned in that paragraph were all tested and came back normal.

Please add actual results and ranges

serenfach profile image
serenfach

Just to put your mind at rest - the symtoms you mentioned and your blood results suggest your thyroid is struggling, and is swollen because it is working hard. Despite this hard work, it is not managing to produce the thyroid levels you need.

No, it is not cancer, and no, you are not going to die. I know it is scary, but it is just your body saying it needs help. Once they start you on Levothyroxine, things will change, your thyroid will get the help it needs and your body will feel the benefit. Hang on in there, we are here to support you. Sending a hug.

Bobble123 profile image
Bobble123 in reply toserenfach

Thank you so much, this honestly means more than you know, I just feel like there’s no one to talk to about it, I really appreciate it.

serenfach profile image
serenfach in reply toBobble123

Feel free to PM me anytime if you need a shoulder. I know how you are feeling only too well. I may take a while to respond as I am in the middle of lambing, .. It is a real shame that care and compassion is now no longer available on the NHS. You will be fine.

Batty1 profile image
Batty1

Dizziness can be happening because your stressing yourself out about thyroid cancer before you even know if you have it or not “relax” don’t worry.

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