“A high TSH indicates an under-active thyroid”

[Noddysenior]

Reading one of the posts earlier today, a well-informed contributor answered a request for help with the ‘fact’ that high TSH means an under-active thyroid. To set the record straight that is not true in all cases. I have non-suppressed TSH (4.6), along with fT4 at 33, and T3 at 6.8. Although the reasons are rare (adenoma, thyroid hormone resistance), there are cases. And we usually keep being misdiagnosed, because doctors fail to look beyond ‘high TSH=hypo’. I’m hyperthyroid at present.

[humanbean]

Reading one of the posts earlier today, a well-informed contributor answered a request for help with the ‘fact’ that high TSH means an under-active thyroid.

There are various ways in which thyroid disease can present itself and most of the contributors on here would - at least to begin with - describe the most common presentations, which are Hashimoto's Thyroiditis (Hashi's) for hypothyroidism and Graves' Disease for hyperthyroidism.

But that last sentence is an over-simplification. For example, Hashi's usually starts as "temporary hyperthyroidism" then becomes hypothyroidism later. And people with hyperthyroidism which isn't caused by Hashi's usually develop this condition as a result of toxic nodules in the thyroid or Graves' Disease.

From the reading I've done, based on your results my first guess might have been atrophic thyroiditis which is rare - very few people come here and mention it or the results that underlie it, doctors would very rarely have the knowledge to diagnose it, and the people who come to this forum are the desperate and the undiagnosed.

From what you say it sounds as if you have two conditions in one thyroid, which doesn't sound like fun. Resistance to thyroid hormone comes up quite often, adenomas get mentioned occasionally.

Just out of curiosity, where was your adenoma found? Has it been removed? If not, why not?

For what it is worth, there is a thread on atrophic thyroiditis with a couple of links you might find of interest :

healthunlocked.com/thyroidu...

And you might find this website helpful :

elaine-moore.com/

[Noddysenior in reply to humanbean]

Thanks for these helpful comments, humanbeam. I’ll follow up those links.

I had an MRI scan last December which did not show up an adenoma, so my consultant is now thinking about a genetic mutation (possibly inherited) for which I am being referred to Addenbrookes in Cambridge. Sadly, I have no appointment yet, but my bloods have now been similar for almost two years. I’m very much in the dark, so any advice is gratefully received.

[SlowDragon Administrator in reply to Noddysenior]

I was going to say ...have you considered Covid....but if had odd results for two years ...that’s unlikely

Have you had thyroid ultrasound scan?

Essential to test vitamin D, folate, ferritin and B12 too

[Noddysenior in reply to SlowDragon]

I’ve had scan and MRI, but not tests for Vit D, folate and B12. I had ferritin tests two years ago and they were high, but GP seems to have put this down to the diabetes which was diagnosed two weeks later.

[SlowDragon Administrator in reply to Noddysenior]

Absolutely essential to regularly retest vitamin D, folate and B12......especially B12 and folate when on metaformin

[SlowDragon Administrator in reply to Noddysenior]

Also ....just noticed you are on propranolol....how much propranolol

Propranolol significantly affects thyroid hormones

Came across this article yesterday

jamanetwork.com/journals/ja...

A patient on a regimen of 400 mg/day of propranolol hydrochloride was observed to have elevated thyroxine (T4) and free T4 levels with a normal thyrotropin response to protirelin. This led us to study the prevalence of hyperthyroxinemia in 14 consecutively treated patients with hypertension on daily doses of propranolol of 320mg or more. Four of 14 patients had elevated serum T4 levels. As a group, the patients on propranolol therapy had higher serum T4 levels, free T4 indices, and triiodothyronine levels than did healthy controls. The use of high-dosage propranolol may be associated with euthyroid hyperthyroxinemia and be a source of diagnostic confusion. All patients receiving therapy with high-dosage propranolol should undergo protirelin testing before one can conclude that their elevated thyroid hormone levels are due to hyperthyroidism.

I was stuck on low dose propranolol 20 years, despite being hypothyroid.....caused no end of complications (more on my profile)

Propranolol lowers PTH hormones too

This can mess with vitamin D and magnesium levels

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

Propranolol and thyroid hormones

pubmed.ncbi.nlm.nih.gov/168...

[Noddysenior in reply to SlowDragon]

I’m on low dose- 10mg three times a day. I was prescribed it because of the anxiety, shakiness, sweating caused by the thyroid problem. It has been very effective in reducing the symptoms. I asked my Consultant in September if I could come off them, but she said not before I’ve seen a specialist at Addenbrookes- I’m having my first meeting in Cambridge next week.

[SlowDragon Administrator in reply to Noddysenior]

How long been on metaformin

Sweating, especially at night, can be due to low B12

Low vitamin levels can significantly affect thyroid levels

Have you tried low carb diet for diabetes

And/or gluten free diet for thyroid issues

Anxiety can be linked to gluten intolerance

Obviously essential to test all four thyroid antibodies

[Noddysenior in reply to SlowDragon]

I’ve been on metformin for two years this month.

[SlowDragon Administrator in reply to Noddysenior]

So similar time frame to add thyroid results

[Noddysenior in reply to SlowDragon]

My diabetes diagnosis led to thyroid test, initially only tsh. The result led GP surgery to think all was okay. It took another 7-8 months of rapid weight loss before I got them to investigate further. Only then did it become clear that I was ‘unusual’.

[SlowDragon Administrator in reply to Noddysenior]

When did rapid weigh loss start...... before all diagnosis or after starting on metaformin/propranolol

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms and can cause weight loss too

We see many Hashimoto’s patients misdiagnosed as Graves’ disease if all antibodies not tested

(nearly happened to me too 28 years ago....GP assumed Graves I had lost lot of weight....fortunately he was on the ball and tested for Hashimoto’s too)

Anxiety is extremely common hypothyroid symptom too

[Noddysenior in reply to SlowDragon]

My weight loss started just before my diabetes diagnosis. So it was believed that the diabetes caused the loss. I’m not so sure, as I have no doubt that there was a problem with my thyroid at the same time. The issue was compounded by the fact that I was initially diagnosed as T2 diabetes and given another medication (dapagliflozin) in addition to metformin which was quickly withdrawn in May 2019 when it was suggested I might not be T2. I was continuing to lose weight throughout this time and only stabilised it when I saw a dietician who told me to ignore a ‘diabetic’ diet as I was becoming malnourished. I had to increase my calorie intake dramatically.

[SlowDragon Administrator in reply to Noddysenior]

When did you start taking propranolol?

Similar time frame?

[Noddysenior in reply to SlowDragon]

Started on propranolol in February 2020.

[SlowDragon Administrator]

Is your diabetes type one or type 2.?

Type one is autoimmune. Having one autoimmune thyroid disease makes others more likely

Have you had BOTH TPO and TG thyroid antibodies tested for Hashimoto’s (autoimmune hypothyroidism)

And TSI or Trab antibodies tested for Graves’ disease- autoimmune hyperthyroidism

Metaformin can significantly reduce B12 levels and folate

independentnurse.co.uk/clin...

endocrineweb.com/news/diabe...

Why were you originally prescribed propranolol?

[Noddysenior in reply to SlowDragon]

I am “probably” LADA, according to consultant. This (at the moment) basically means I have autoimmune diabetes, but am not in need of insulin yet. I’m taking metformin to help lower blood sugar levels.

I’m sure I’ve had all the relevant thyroid tests, but I’ll have to check my medical records going back well into 2019.

See my previous answer as to why I’m taking propranolol.

[Noddysenior in reply to Noddysenior]

Thanks for the help SlowDragon.

[SlowDragon Administrator in reply to Noddysenior]

Strongly recommended getting FULL thyroid and vitamin testing done privately if GP won’t do all tests needed

We need OPTIMAL vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Serum B12 at least over 500

Active B12 over 70

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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 thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Graves Disease antibodies test

medichecks.com/products/tsh...

healthunlocked.com/thyroidu...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Can have slightly raised TPO/TG due to Graves

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

[humanbean]

I noticed you mentioned being diabetic.

If you haven't already seen it then you might find this website and forum well worth investigating :

diabetes.co.uk/

diabetes.co.uk/forum/