now underactive?

[JenLois]

Hello

I have Graves’ disease, I last had my bloods done 3 weeks ago. My TSH was none existent and my T4 was 15 (back in normal range).

Over the last weekend I have felt very unwell, faint, dizzy, weak and noticed on my Fitbit that my resting heart rate is low 50’s. This is unheard of for me, my RHR has never been this low.

I did call the Dr today who sent me off for an urgent blood test. I’m waiting the results. I’m quite concerned about the low heart rate and am struggling to sleep.

Could I possibly have gone underactive in only 3 weeks? That seems very quick? Im only on 5mg of carbimazole daily.

Any reassurance would be appreciated. Im struggling to work due to feeling so poorly.

Thank you

[SlowDragon Administrator]

Looking at previous post

healthunlocked.com/thyroidu...

It’s possible to have Graves’ disease (autoimmune hyperthyroid) and Hashimoto’s (autoimmune hypothyroid) at same time

Your TPO antibodies are high ……this could be because of Graves’ disease but could be Hashimoto’s

If you do have both this is managed by endocrinologist, usually with “block and replace “ …..block with Carbimazole and replace with levothyroxine

ESSENTIAL to test Vitamin D, folate, B12 and ferritin at least annually

Most thyroid patients have low vitamin D, folate and B12

Ferritin often low with Hashimoto’s and high with Graves’ disease…..

but as with all thyroid issues……every person is different

Request GP test TSH, Ft4 and Ft3 plus vitamin levels

Test early morning

You also need coeliac blood test if not tested already

[JenLois in reply to SlowDragon]

Thank you. So if I have Hashimotos as well should this show up in the blood test I had yesterday? By my levels being the opposite direction?

I think they are also checking ferritin as this was low before, but doubt the other stuff will be checked to be honest.

[SlowDragon Administrator in reply to JenLois]

See what recent tests show

Get private test if necessary

[JenLois in reply to SlowDragon]

Hello SlowDragon

I wondered if you would know how a diagnosis of duel graves and hashi’s would me made?

After months of feeling unwell I’ve managed to speak to my GP today and he’s said that my symptoms sound hypo and has contacted the endo for advice.

However my blood levels aren’t showing underactive. T4 now normal level and TSH non detectable.

[SlowDragon Administrator in reply to JenLois]

You need

TSI or Trab antibodies tested for Graves’ disease

Have you definitely had these tested

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

TPO and TG antibodies tested for Hashimoto’s (autoimmune hypothyroid)

These can be slightly raised with Graves’ disease too

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming hypothyroid

[JenLois in reply to SlowDragon]

Thank you.

Yes I have a graves diagnosis based on these tests…

Test results

[SlowDragon Administrator in reply to JenLois]

High TPO antibodies could be due to Hashimoto’s

It’s possible to have both Grave’s and Hashimoto’s at the same time

Next step get vitamin D, folate, B12 tested

Plus as you have low ferritin you need full iron panel test for anaemia

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

Medichecks iron panel test

medichecks.com/products/iro...

[JenLois in reply to SlowDragon]

Thank you. My GP has sent off for advice from the Endo as my symptoms seem hypo.

I’ve had full iron. My hemoglobin was in range (not anemic yet) but only just. Looking back it appears it has always been on the low end of the scale which may account for my chronic fatigue.

[SlowDragon Administrator in reply to JenLois]

Any obvious reason for low iron

Are you vegetarian or vegan

Pre or post menopause

Heavy periods

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

retest 3-4 times a year if self supplementing

It’s possible to have low ferritin but high iron

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

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

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

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...

Excellent article on iron and thyroid

cambridge.org/core/journals...

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...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms

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...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[JenLois in reply to SlowDragon]

Thank you so much for this information. It looks very interesting. I will give it a read through.

As far as I know my ferritin has not been over 30 (at least not recently)

[pennyannie]

Hello again :

All the Anti Thyroid drugs, Carbimazole or PTU do, is semi-block your daily thyroid hormone production which in turn lowers your T3 and/or T4 readings.

Maybe you need to take less AT drug - you could chop the 5 mcg tablet into 2 ?

Too low a T3 and/or T4 reading and you may experience symptoms of an underactive thyroid and experience the equally disabling symptoms of hypothyroidism.

Too high a level of T3 and/or T4 reading and you may well experience symptoms of an overactive thyroid and unless you are aware of a neck swelling, or breathing or swallowing difficulties the chances are you have a thyroid auto immune disease - Hashimoto's and or Graves -

I think looking back we have evidence of both these AI disease antibodies being positive.

How are your eyes - dry, watery, sore, any trouble with light sensitivity ?

If using any preparations please ensure all are Preservative Free - even those prescribed by the NHS.

[JenLois in reply to pennyannie]

Hello, thank you.

I definitely feel that I may have gone underactive, but it just seems a very quick change from my levels only 3 weeks ago.

I have had some slight issues with my eyes feeling dry, sore and looking a bit red.

[pennyannie in reply to JenLois]

OK - this might be the start of Thyroid Eye Disease -

You might like to contact the Thyroid Charitable Trust as they can signpost you to specialist clinics throughout the country where eye specialist and endocrinologists work together consulting patients on their progress and can monitor and dose adjust medications as this disease progresses

tedct.org.uk

If your immune system is still active and upset and your antibodies over range this will be driving your T3 and T4 levels - up and down - as we have both stimulating and blocking antibodies and at any one time either extreme will be in charge causing either hypo or hyper symptoms - in some people, given enough time - Graves tends to burn itself out.

pubmed.ncbi.nlm.nih.gov/338...

If dealing with both Graves and Hashimoto's which I think you are, Graves treatment takes presedence :

[Highroid]

I had a similar issue going hypo very quickly after starting on Carbimazole. This continued even when on a low dose (5mg/day).

After stopping the Carbimazole for a bit I was put on "block and replace" (as mentioned by SlowDragon), a combination of Carbimazole and levothyroxine.

Luckily I have been put under the care of a nurse practitioner who is a specialist in hyperthyroidism, and she seems genuinely interested in finding the best treatment. It has been a bit of a rollercoaster in terms of energy levels, but "block and replace" seems to suit me much better.

Good luck.

[JenLois in reply to Highroid]

Thank you for sharing your experience.

Perhaps my levels have dropped quickly then, which would explain my symptoms. My RHR is currently 54 and I feel pretty unwell.

That’s great you are being cared for by a specialist. I think that’s where I’m finding this difficult, I haven’t been referred to endocrinology and I’ve had very minimal contact from my GP. I also can’t get hold of them. When I did get through yesterday eventually I was told I should have just gone to A&E if I was having heart rate issues.

[Highroid in reply to JenLois]

Hopefully your blood test results will bring a bit of clarity.

Your GP may be able to ask for advice from a endocrinologist to change/confirm dose etc., even before you get an appointment to see an endo yourself.

[JenLois in reply to Highroid]

Thank you.

I have just had the results back and frustratingly my TSH and T4 are exactly the same as 3 weeks ago. TSH non detectable and T4 15, so I guess I am not underactive.

Which is weird why my heart rate is slow and I feel so poorly.

My ferritin is only just in the lower end, it was previously low and has only raised slightly.

[SlowDragon Administrator in reply to JenLois]

TSH non detectable and T4 15,

What’s range on Ft4

You need TSH, Ft4 and Ft3 tested together early morning