Wrong diagnosis?: Hi, Two weeks ago my GP called... - Thyroid UK

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Wrong diagnosis?

9 Replies

Hi,

Two weeks ago my GP called to do an unscheduled HRT annual review. I’m 50, not on other meds and quite fit. She said feeling sluggish was normal for folk with Hyperthyroidism, I nearly fell over in shock! Apparently I’ve had hyperthyroidism since 2014 which was diagnosed by 5 annual tests of undetected TSH and one high T4 of 27 (range 10 to 22) test in 2019. I’ve not seen a GP since March 2019 so not tested since. I was not told about these tests, I thought they were full blood count tests.

I have done an Advanced Thyroid test from Medichecks, draw was done fasted at 07:00 and the results are:

TSH. 3.54 RANGE 0.27-4.2.

T3. 3.93 RANGE 3.1 -6.8.

T4. 17.8 RANGE 12 -22.

THYROGLOBIN ANTI. 11. RANGE < 115.

THYROID PEROXIDASE ANTI. 9. RANGE < 34

B12. >150 RANGE. 35.5-150.

FERRITIN. 95.9. RANGE 13-150.

FOLATE. 16.59. RANGE >3.59

VIT D. 150. RANGE 50-200.

I supplement Vit D and Iron so I will re-test vits in 3 months when I plan to stop taking them for two weeks.

I don’t think these results reflect a Diagnosis of Hyperthyroidism but this is all very new to me!

Could I please have your opinion?

Thank you.

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9 Replies
Aurealis profile image
Aurealis

can you see a different doctor?

SeasideSusie profile image
SeasideSusieRemembering

VictoriaAsp

I supplement Vit D and Iron so I will re-test vits in 3 months when I plan to stop taking them for two weeks.

Stop the iron for 7 days (not two weeks) and make sure you fast for 12 hours before the test.

Why are you taking iron? Did you do an iron panel and it showed iron deficiency or is it prescribed?

Continue with the Vit D supplement up to and including the day before the test - this will then measure what your dose is achieving and you can decide from that if you need to alter your dose. Don't stop Vit D for two weeks.

Are you supplementing with B12 and/or B Complex?

I don’t think these results reflect a Diagnosis of Hyperthyroidism but this is all very new to me!

No, your TSH shows your thyroid is struggling. Most normal healthy people will have TSH no more than 2, very often around 1.

Apparently I’ve had hyperthyroidism since 2014 which was diagnosed by 5 annual tests of undetected TSH and one high T4 of 27 (range 10 to 22) test in 2019.

Possibly transient. Was this after you had a baby? Were thyroid antibodies tested at the time?

in reply toSeasideSusie

Hi SeasideSusie and thank you for replying, helping.

I will stop the iron and re-test in 7 days, I don’t think I want to wait the full 3 months now. My hair was shedding and I felt a little sluggish so the GP said to take a month course of Ferrous Sulphate 200mg 3 times a day. I bought them from the chemist.

I drink 8mg of Marmite stirred in hot water, I thought this was a good way of topping B vits but I didn’t think this was possibly too B12 rich.

The GP hasn’t ever tested for antibodies or T3. I’m 500 miles away from the surgery but have taken the old Thyroid results over the phone twice last week. I’ve not had a baby for 30 years.

I’m a bit nervous about the TSH being higher than ideal and have little confidence in my GP but rely on her for HRT. Thank you so much for pointing this out.

greygoose profile image
greygoose

Grave's disease is confirmed by TRAB and TSI. TPO and Tg antibodies are basically for Hashi's, but can be present in Grave's.

Buddy195 profile image
Buddy195Administrator in reply togreygoose

GG is absolutely correct, it’s TRAB and TSI for Graves. I was originally diagnosed as Graves but these were not tested at the time. Later testing was negative in my case for these, but positive for TPO and TG, so my original diagnosis was incorrect. I actually am under active.

PurpleNails profile image
PurpleNailsAdministrator

TPO & TG are often positive in BOTH autoimmune thyroiditis (Hashimoto’s) & Graves (highest elevations in Hashis)

Positive Trab or TSI is considered sufficient to confirm Graves

Heres what each of antibodies mean in full:

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies) 

TSI (Thyroid-Stimulating Immunoglobulin)

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

Previous results may show low TSH & slightly over-range FT4 but current results show struggling thyroid & low FT3.

I doubt a diagnosis if Graves is suggested, but any low TSH high FT4 or FT3 is referred to as “hyperthyroid” but it’s often transient.  

Antibodies are currently negative but antibodies don’t always appear.  Antibodies confirm autoimmune issue but the autoimmune aspects aren’t what’s treated.  

Keep monitoring regularly as you may see a trend of rising TSH & lowering level.

Pretty appalling they are aware you had low TSH and no further investigation as to cause and careful monitoring of levels increasing further.  There’s more than 1 results so how did this happen? 

in reply toPurpleNails

Thanks PurpleNails, I will keep monitoring/testing. Is it best to do the same test every month please?

I rang the GP and asked whether I should have been medicated during the 5 year period and was told that it wasn’t necessary as I was without symptoms. However I was prescribed Zopiclone daily for 5 years for horrific insomnia in the same period. I’ve not taken Zopiclone for 3 years but as it was re-classed as ‘controlled’ I was seen in the surgery every quarter so I’m amazed the thyroid stuff wasn’t mentioned.

It’s bizarre.

PurpleNails profile image
PurpleNailsAdministrator in reply to

I think I read TSH tend to be higher early in cycle but it not a over riding factor & assume as on HRT post menopausal. Edit. Sorry - I realise now you mean test TSH, FT4 & FT3 type of test. Not day/time of test.

Antibodies don’t need to be repeated often. Nutrients, depends on what’s deficient & requires supplements. Function likely more often. There’s lots of options.

Perhaps do a funtion every other time with a option including nutrients.

For testing it more important to arrange testing ideally before 09.00 fast overnight (lots of water).  This show highest TSH.  

Avoid any supplements with biotin week before.  It really applies to very high doses of biotin, but if cautious best to leave off biotin can affect testing process.

Every month might not be necessary,  every few months, may be adequate to compare an overall trend.  if private testing will work out expensive. 

Without symtoms? Insomnia is a symptom.  Did doctors didn’t thoroughly check symptoms…

 Similar happened to me also in 2014 & I wasn’t rechecked for many years & my levels had climbed & was continuous. (Nodule)  I take carbimazole still.

Lots report they are given carbimazole based on low TSH even when FT4 & FT3 is in range (low even) that’s wrong too.  but not telling you, not monitoring you is no excuse.  

SlowDragon profile image
SlowDragonAdministrator

Your thyroid looks like it’s struggling

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

Both antibodies for Hashimoto’s appear to be negative

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

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

Suggest you get hold of all previous results

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results are posted to you

Important to see exactly what has been tested and equally important what hasn’t been tested yet

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

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

List of private testing options and money off codes

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

To test for genuine hyperthyroid also called Graves’ disease

You would need Graves Disease antibodies test

Can’t be done by DIY finger prick test….has to be private blood draw

medichecks.com/products/tsh...

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

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