First appointment with a thyroid specialist. A... - Thyroid UK

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First appointment with a thyroid specialist. Any advice?

ChilliBangBang profile image
14 Replies

I recently had a blood test as my HRT meds haven't been addressing most of the symptoms I first presented with. To be honest I suspect perimenopause was the easy go to because of my age.

The results showed a TPO antibody level of 1137 but my thyroid hormones are within normal range so I have been advised to speak to thyroid specialist. I am frantically trying to learn all I can before my appointment on Wednesday but wondered if anyone can advise of things I really should ask? I want to make the most of the appointment.

My symptoms very much follow those expected with hypothyroidism, brain fog, extreme fatigue, weight gain, hair loss, joint pain, constipation etc.

any advice is very much appreciated

Thanks :)

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ChilliBangBang profile image
ChilliBangBang
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SlowDragon profile image
SlowDragonAdministrator

can you add actual Ft4, Ft3 and TSH 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)

Ideally you would also have vitamin testing done BEFORE consultation

vitamin D, folate, B12 and ferritin

and coeliac blood test

as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

ChilliBangBang profile image
ChilliBangBang in reply to SlowDragon

Blood test was done at 9am only had water before the test as I get morning sickness so cant stand anything in the morning (not pregnant, just have had morning sickness for 17 years!)

Ferritin - 12.2

Vitamin D - 65.6

Folate - 5.2

B12 - 171

T3 - 4.8

T4 - 11.9

TSH - 3.58

Thanks for taking the time to respond :)

SlowDragon profile image
SlowDragonAdministrator in reply to ChilliBangBang

Please add ranges (figures in brackets after each result)

Especially Ft4 and Ft3

At first glance

Ferritin is deficient

Is this an NHS test

Is the B12 serum B12 test - typically range 180-680

If yes….B12 is extremely low/deficient

Folate looks very low

Vitamin D needs improvement

What’s GP doing about low ferritin

SlowDragon profile image
SlowDragonAdministrator in reply to ChilliBangBang

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Are you vegetarian or vegan

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

If taking any iron supplements stop 5-7 days before testing

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...

Great reply by @fallinginreverse

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

ChilliBangBang profile image
ChilliBangBang in reply to SlowDragon

Thank you so much for all of this and I will work my way through those links

Im not a vegetarian although I have never been a big meat eater, I suspect this may have to change to get my health where it needs to be. I have struggled with low iron and ferritin levels since my mid teens so over 35 years and have had many supplements prescribed which have made no difference other than discomfort and worsened constipation. Each time I have been told that there is little more they can do. I think its time I started pushing for why these numbers dont increase.

As yet my GP hasn't seen these results as they were obtained for a private HRT consultation. I will hopefully see my GP soon but not holding my breath at getting a quick appointment.

Ferritin - 12.2 (10 - 291)

Vitamin D - 65.6 no range given, just said sufficient if over 50

Serum Folate - 5.2 (3 - 17)

B12 - 171 (25.1 - 165) it says Active B12 not serum

T3 - 4.8 (2.6 - 7.1)

T4 - 11.9 (10.4-19.4

TSH - 3.58 (0.55 - 4.78)

Again, I am truly grateful for your assistance. I think you have given more help than the NHS in 35 years!

SlowDragon profile image
SlowDragonAdministrator in reply to ChilliBangBang

only add one supplement at a time and wait 10-14 days before adding another

Vitamin D first

Your low vitamin levels likely linked to being hypothyroid and/or gluten intolerance

B vitamins

So B12 appears to be high

But this can be deceptive when hypo

Unless you are taking B12 supplements?

Paradoxical B12 deficiency

b12oils.com/paradoxical.htm...

Folate is obviously low

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

This can help keep all B vitamins in balance

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 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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

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

SlowDragon profile image
SlowDragonAdministrator in reply to ChilliBangBang

Free T4 (fT4) 11.9 pmol/L (10.4 - 19.4) 

Ft4 only 16.7% through range so clearly very low

Low vitamin levels tend to lower TSH making it harder to get hypothyroidism diagnosed until vitamin levels are higher

ChilliBangBang profile image
ChilliBangBang in reply to SlowDragon

Amazing, I have a lot of reading to do tomorrow :)

grumpyold profile image
grumpyold in reply to ChilliBangBang

I'm responding to the last line of your response to SlowDragon.

I have several health issues and belong to 3 HealthUnlocked forums. They ALL are more helpful and knowledgeable than ANY NHS doctor I have ever seen.

I almost regard this group as my second family.🤗🫂

Italiangirl123 profile image
Italiangirl123

In response to your question about preparation for your Endo consultation what I did was to prepare a written history to hand over together with a table of blood test results. This was apparently much appreciated and also meant that I didn’t forget anything!

ChilliBangBang profile image
ChilliBangBang in reply to Italiangirl123

brilliant. Thanks for the advice 😊

RufusRuffcut123 profile image
RufusRuffcut123

I had to go to a few doctors over a year because my blood tests were in the “normal” range. I put on so much weight in that year it was ridiculous. They just kept handing me diet sheets. The last test I asked my doctor to do (and he was quite reluctant) , was another standard Thyroid test. He called me at home. I barely had any Thyroid function. My point being, stand your ground. I had all your symptoms .

ChilliBangBang profile image
ChilliBangBang in reply to RufusRuffcut123

Thank you. I am finally starting to! I can forcibly advocate for any member of my family but have never done so for myself. I am determined to get things sorted now.

I hope you are back to normal now 😊

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