Newly diagnosed Hyperthyroidism- help with results - Thyroid UK

Thyroid UK

142,050 members167,379 posts

Newly diagnosed Hyperthyroidism- help with results

Augustus405 profile image
32 Replies

I was diagnosed with hyperthyroidism at the end of November and anaemia.

I’ve been on 5mg Carbimazole once a day since then, had my second lot of bloods and my T4 had got higher. I’ve just been prescribed propranolol for fast heart rate and shakes. They want to wait until my next lot of bloods to see if they need to increase the dosage.

I was just looking for some advice on the results as I don’t really understand them fully and thoughts on my dosage.

thanks

Written by
Augustus405 profile image
Augustus405
To view profiles and participate in discussions please or .
32 Replies
PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

Do you know what your results were at diagnosis?

FT4 & FT3 are over range but you not been given a very high dose of anti thyroid. It takes around 6 weeks for levels to adjust to a dose but of your levels are naturally fluctuating if can be difficult to predict what your levels will do.

Sometimes high thyroid levels are transient and levels naturally drop so too high a dose of carbimazole will cause too great a drop.

Drs should really be looking at why you are hyperthyroid. & if it is temporary or continuous. Has any thyroid antibodies been tested? have you been referred to endocrinology?

When are your next set of tests? Any increase in FT4 & FT3 should prompt an increase in carbimazole.

Usually doctors “over do” carbimazole when TSH low / levels high & many become hypothyroid (many often feel worse with the change in levels) so your doctor isn’t doing the norm.

Has folate, ferritin, B12 & vitamin D been tested & screen for celiac might be good idea.

Augustus405 profile image
Augustus405 in reply toPurpleNails

They haven’t done any antibodies test as far as I’m aware or tested folate, ferritin, B12 & vitamin D although they might have and I don’t know as I don’t have a copy of my first blood tests. I haven’t been referred to endocrinology. My bloods are due second week of Feb. Should I wait and see those results and then discuss what you’ve mentioned above or would you suggest discussing this sooner?

pennyannie profile image
pennyannie in reply toAugustus405

If you do not have online access to your medical records - suggest you apply for same and ask the receptionist at your doctors for the necessary paper work.

In the meantime - maybe ask for a copy of the original blood test results, ranges and the anti bodies found positive in the very first blood test -

we are now legally entitled to copies of all our blood test results.

The Carbimazole is an Anti Thyroid drug and generally prescribed when there is a diagnosis of Graves Disease and positive o/range TRab / TSH Receptor anti bodies :

and an Anti Thyroid drug prescribed to semi-block your new daily, own thyroid hormones rising higher and higher - so if your T4 rising after 4 weeks on the AT drug - you likely need a dose increase in the Carbimazole -

The initial thyroid blood tests will have been run in full by the Laboratory - you just need your copy of the medical evidence of diagnosis and the justification for the prescribing of the AT drug.

I doubt the first blood test also ran the vitamins and minerals though.

PurpleNails profile image
PurpleNailsAdministrator in reply toAugustus405

Ask if nutrients & celiac screen can be tested along with TSH, FT4 & FT3. GPs can request TPO, & lab will add TG if positive (this will confirm autoimmune, but they occur with both Hashimoto’s & Graves)

Drs might refuse nutrients testing or say unless symtoms indicate them not necessary. You do have option of private blood tests which can be ordered online & sample taken via fingerprick sample / post if required.

An endocrinologist can test TRAb or TSI which is diagnosis of Graves.

Propranolol will help with symtoms & also has mild anti thyroid element as lowers FT3. Always reduce propranolol dose very slowly when stopping. Specialist abruptly stopped a 3x40mg daily dose after 2 months & I was made very unwell. GP reinstated as permanent migraine prevention & I did lower but still remain on low dose.

Augustus405 profile image
Augustus405 in reply toPurpleNails

Thank you, I will discuss the nutrients and celiac test for my bloods in Feb but I’m happy to go private if needs be. Should it be standard to be referred to endocrinology or will the gp just try to bring the levels down themselves first?

PurpleNails profile image
PurpleNailsAdministrator in reply toAugustus405

Yes, usually GPs do refer hyperthyroidism to endocrinology. Often we hear of GPs submitting a referral & not attempting to start any treatment which can be an issue with very long wait lists.

Here’s a list of blood testing companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies. Others basic function only. Some also have discount codes available.

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

You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.

Ideally test just before 09.00! fast overnight, take carbimazole as normal (those who take levo delay dose until after draw). Remember to leave off biotin 3-5 days before.

pennyannie profile image
pennyannie

Hello Augustus and welcome to the forum :

Can you please share your blood test results at diagnosis - which should be a TSH + T3 + T4 and which antibodies were over range and positive in this original blood test analysis - generally written as either / or and - a TPO / TgAB / TSI/TRab result and range - or maybe can you see a TSH Thyroid Receptor reading with a single digit result and cut off number ?

What symptoms took you to the doctor and do you gave any other health issues ?

Augustus405 profile image
Augustus405 in reply topennyannie

I haven’t got the original test results only my most recent but I’ll give the doctors a call and request a copy and post as soon as I have it.

I went with symptoms of anxiety, racing heart and struggling to sleep. I have anaemia also but no other health conditions.

pennyannie profile image
pennyannie in reply toAugustus405

Ok then - do you mean low ferritin and iron deficient anemia ?

Just phone and ask the receptionist for a copy of the initial blood test results - and suggest you could pick up the print out in 2 days time and if this would be a convenient time as you would also like to apply for on line access to your medical records.

Augustus405 profile image
Augustus405 in reply topennyannie

Yes it’s iron deficient anemia. I will contact the GP and get a copy and request access. Thank you

pennyannie profile image
pennyannie in reply toAugustus405

Trust you have signed off ' sick ' in the short term :

pennyannie profile image
pennyannie in reply toAugustus405

Best to start a new post / question when you have the initial blood test results and ranges rather than tack it onto the bottom of what will be seen as an 'old and answered post ' if after 24 hours -

We can always look back at your Profile page to refresh our memories and new posts all get seen by many more forum members who can help, advise and support you.

Augustus405 profile image
Augustus405 in reply topennyannie

Here are the first blood results but I can’t see anything relating to my thyroid but you may see it?

.
pennyannie profile image
pennyannie in reply toAugustus405

Thank you - I've zoomed as much as I can and used a magnify glass - before everything gets further distorted -

and yes, there is likely a further page, or two, as there is no mention here of thyroid or antibodies -

I did spot your ferritin at 4 - what is being done about this - are you waiting on a colonoscopy / endoscopy / iron panel - and if all clear - booked in for an iron infusion ?

Is this the first time your ferritin has been this low ?

Please tell me - if working - that you are signed off sick.

Augustus405 profile image
Augustus405 in reply topennyannie

Yes I thought there must be some pages missing, I’ll call them again tomorrow and have requested full access.

They’re not doing anything they just told me to buy some iron but I fear I’m not getting a big enough dose.

Yes I’m currently signed off sick.

SlowDragon profile image
SlowDragonAdministrator in reply toAugustus405

They’re not doing anything they just told me to buy some iron but I fear I’m not getting a big enough dose.

This is totally unacceptable

Make an urgent appointment to discuss and don’t leave appointment with out a prescription and plan of action

Ferritin below 30 is deficient

Your MCH, MCHC, MCV, hemocrit and haemoglobin all confirm you are anaemic

Likely to qualify for iron infusion

Ask for referral to haematologist too

You also need

Vitamin D tested

Coeliac blood test

And need TSI or Trab antibodies tested to confirm Graves’ disease - autoimmune HYPERTHYROID

Ideally also TPO and TG antibodies tested for Hashimoto’s - autoimmune HYPOTHYROID

Augustus405 profile image
Augustus405 in reply toSlowDragon

I’m looking at the private tests do you think either of these will cover most of what I need checking?

Medicheck - Advanced Thyroid test

Thyroglobulin antibodies

Thyroid peroxidase antibodies

hs-CRP

Ferritin

TSH

Free T3

Free thyroxine

Folate - serum

Vitamin B12 - active

Vitamin D

or

Thriva - complete thyroid function

Triiodothyronine (FT3)

Thyroid-stimulating hormone (TSH)

Thyroglobulin antibodies (TgAB)

Thyroid peroxidase antibodies (TPOAb)

Thyroxine (T4)

Free thyroxine (FT4)

Vitamin D

Ferritin

Active vitamin B12

SlowDragon profile image
SlowDragonAdministrator in reply toAugustus405

See what you can get GP to test

Make an urgent appointment to discuss correct treatment

A) severely anaemic. Probably qualify for iron infusion. Definitely GP should be treating, not just saying buy OTC supplements

B) extremely low B12. Test required for Pernicious Anaemia. Highly likely to need B12 injections anyway, even if not PA

C) request politely but firmly that thyroid antibodies are tested

TSI or Trab for Graves’ disease

TPO and TG antibodies for hashimoto’s (can also be slightly raised with Graves)

If GP unhelpful

Use Medichecks as it includes folate and CRP

medichecks can also test Trab antibodies for Graves disease, but it’s not cheap and needs to be blood draw not finger prick test so that adds to the cost

Graves Disease antibodies test

medichecks.com/products/tsh...

Roughly where are you in U.K.

you could get iron infusion privately. Not cheap

Costs of iron infusion 2024

healthunlocked.com/thyroidu...

Cambridge iron clinic

cambridgeironclinic.com

Augustus405 profile image
Augustus405 in reply toSlowDragon

Thank you so much, that makes it much clearer what I need to be asking for. I’m in Worcestershire, ill have a look at the private options for iron infusion just incase

helvella profile image
helvellaAdministrator in reply toAugustus405

With such low ferritin and generally awful iron lab results, you should be a prime candidate for an iron infusion.

However, you absolutely must also address your low B12. Ideally, you would be tested for Pernicious Anaemia before supplementing. But I guess that is unlikely. (And the test often returns a false negative.)

Maybe consider taking 1000 microgram B12 every day, even more than once. And most of us take methylcobalamin but some find hydroxocobalamin suits better.

Your folate isn't awful, but could be higher. Maybe 400 micrograms a day of folic acid or, as many prefer, methylfolate.

You might find my iron notes of use/interest:

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

Last updated 23/12/2024

Link to blog:

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

Augustus405 profile image
Augustus405 in reply tohelvella

Thank you, I’m going to have a read through your info. I definitely need to book an urgent appointment to discuss my treatment for anemia. Probably explains why I feel so awful

helvella profile image
helvellaAdministrator in reply topennyannie

If you are using a computer (rather than a phone), you might be able to use the magnifying glass icon to view it, then open that is a new tab. And then zoom in!

The iron results are appalling. Ferritin 4 (11-306).

B12 is only 150 (bottom of range 133 which is itself very low).

Iron results
pennyannie profile image
pennyannie

I am shocked by what you have just written -

please read the link below -

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

I need to close now - but we really do need to get something actioned with this ferritin @ 4 :

It is not up to you to buying supplements !!

SlowDragon

SlowDragon profile image
SlowDragonAdministrator

I went with symptoms of anxiety, racing heart and struggling to sleep. I have anaemia also but no other health conditions.

Being anaemic can cause anxiety and high heart rate

Are you vegetarian or vegan?

B12 is also far too low

Request testing for Pernicious Anaemia

Likely to need B12 injections

Low B12 symptoms

b12deficiency.info/signs-an...

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

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

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 if last test result serum B12 was below 500 or active B12 (private test) under 70:

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

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

Augustus405 profile image
Augustus405 in reply toSlowDragon

Hi, I’m not vegetarian but eat very little meat. Thank you for all the great info I’m going to have a read through. I can’t believe the GP hasn’t even addressed this issue. I’ll get some supplements asap.

SlowDragon profile image
SlowDragonAdministrator in reply toAugustus405

Do NOT start any B12 or vitamin B complex until tested for pernicious anaemia

Get vitamin D tested asap

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Insist GP take action on your severe anaemia

Meanwhile

Strongly recommend you start eating high iron rich diet

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...

Ferrodyn supplement

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...

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 264

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.

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member

healthunlocked.com/thyroidu...

Good explanations of iron

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements

healthunlocked.com/thyroidu...

Frequently NHS will stop prescription iron once ferritin over 30……but that’s still too low

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

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

Medichecks iron panel test

medichecks.com/products/iro...

SlowDragon profile image
SlowDragonAdministrator

Possible reasons for low iron

How old are you pre or post menopause

Heavy periods?

Are you Vegetarian or vegan

ask GP for coeliac blood test first as per NICE Guidelines

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

1.1 Recognition of coeliac disease

1.1.1

Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Augustus405 profile image
Augustus405 in reply toSlowDragon

Im 45 pre menopause, I suffer with heavy long periods. I also eat very little meat so that probably doesn’t help either.

pennyannie profile image
pennyannie in reply toSlowDragon

Thank you so much :

SlowDragon profile image
SlowDragonAdministrator

What were thyroid results BEFORE starting on Carbimazole

Did GP confirm that you definitely have Graves’ disease by testing TSI or Trab antibodies before starting Carbimazole

Augustus405 profile image
Augustus405 in reply toSlowDragon

I’m not sure as there appears to be pages missing from the copy of the bloods they sent me so I’ve got to call them back tomorrow. No they just said you’re thyroid is overactive and started me straight on the Carbimazole so I’m not even sure what is causing the hyperthyroidism

SlowDragon profile image
SlowDragonAdministrator in reply toAugustus405

just to make you aware

Hashimoto’s, autoimmune HYPOTHYROIDISM frequently starts with transient hyperthyroid type symptoms and test results before becoming increasingly hypothyroid

This is why it’s important to test all thyroid antibodies

TSI or Trab antibodies to confirm Graves’ disease

TPO and TG antibodies, if high is generally Hashimoto’s but can be mildly raised with Graves’ disease

Low vitamin D, folate, B12 often low with Graves’ disease and hashimoto’s

Ferritin is usually high with Graves’ disease. But this might not always be the case

Ferritin is frequently low with hashimoto’s

Not what you're looking for?

You may also like...

newly diagnosed help with results

Hi, I was diagnosed hypothyroid a month ago and prescribed 25mcg Levo which I’ve been on since...
Victoria27 profile image

Newly diagnosed hyperthyroidism

Hi 👋 I’m newly diagnosed with hyperthyroidism, multiple nodules. I’ve been prescribed 1, 2.1/2...
Emerald1953 profile image

Newly diagnosed

Hi all, I’ve suffered symptoms of hypothyroid for over 4 years. My bloods always came back with...
Nini79 profile image

Newly diagnosed - help!

I’ve recently had three early miscarriages after falling pregnant very easily. During fertility...
Aloha79 profile image

Newly diagnosed hyperthyroidism

I was recently diagnosed after months of feeling tired and ill plus being permanently too hot. I...
frazzleju profile image

Moderation team

See all
Buddy195 profile image
Buddy195Administrator
PurpleNails profile image
PurpleNailsAdministrator
helvella profile image
helvellaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.