PMS & Graves/Overactive Thyroid Query

Hello, I’m currently going through testing for an overactive thyroid, possibly Graves’ disease and have recently been put on Carbimazole 5mg. I have been taking it for around 3 weeks and this is my first menstrual cycle taking this medication. I normally experience a pretty rough PMS but this month it’s felt super intense, with almost flu like symptoms. Up until this point I hadn’t really noticed too many side effects to taking this medication. But now experiencing a noticeably rougher PMS and I’m wondering if anyone else has ever experienced this sort of reaction?

[PurpleNails Administrator]

Welcome to forum

Firstly, have you read the patient information leaflet (PIL) carefully.

The concern when taking carbimazole is it lowers white blood cells in a very rare reaction.

Feeling unwell or us usually tired, strange bruising, temperature, sore throat, & mouth ulcers are particularly signs you need to discuss with doctor.

Describing flu, sound similar to this & as you have just started the medication it is best to take every precaution.

Contact your dr have the patient leaflet with you as doctors not always fully aware.  

Edit to add further info

5mg is an extremely low starting dose for carbimazole.  This make me suspect that your thyroid levels are minimally elevated or it might be they are not raised but the TSH is low.

Altering your thyroid levels may cause interference to your cycle, it’s likely it is connected.  

Do you have your blood test results?

For full test you need TSH, FT4 & FT3. 

Have you had the cause of your hyper confirmed? If Graves is suspected this should be confirmed by TRab or TSI antibodies.  

With Hashimoto’s (autoimmune thyroiditis) Hyper can be transient, prior to a decline to under active levels & being on carbimazole will hasten the decline. 

[Hidden in reply to PurpleNails]

Hello, thank you so much for your helpful response. I really appreciate your insight. Will take precaution and message to my GP about symptoms. Several blood tests over the last few months, initially gp suspected hashimotos as my results were showing normal TSH and low T4 along with elevated TgAb however more recent tests have continuously shown normal T4 and low TSH (0.01) as this hasn’t changed and due to the symptoms I’ve been experiencing they have trialed me on Carbimazole 5mg and referred me to the endocrinologist.Have another round of blood tests this week for T4/T3 and TSH.So feeling very confused as to what’s going on. A lot of the symptoms I have been experiencing seem to overlap/fluctuate with hypo and hyper thyroid issues. Hopefully will have some answers soon 😊

[PurpleNails Administrator in reply to Hidden]

Carbimazole lowers the production of new thyroid hormones (the thyroid produces T4 & a small quantity of T3)  most T3 is converted from T4.  Free levels are what the body can use.  

The TSH (Thyroid stimulating hormone) is a pituitary hormone which signals the thyroid to make more or make less.  But the TSH can be unreliable and if low it should mean FT4 & FT3 are high.  

Your FT4 are low then in range and the doctor is lowering your thyroid levels in the hope that the TSH rises & looks right, but as FT3 hasn’t been tested, TSH is extremely unreliable & you haven’t been investigated the cause of your thyroid issue you might find you become hypothyroid even on low dose of carbimazole.  

Hope you feel better & you get some answers soon.

[Hidden in reply to PurpleNails]

Thank you, this has been really helpful to read. Just went back through my results and it looks like T3 was check in April 2023, results showed high with 13.2.

I hope so too, thanks so much for your kindness.

[PurpleNails Administrator in reply to Hidden]

Do you have TSH & FT4 results from same time, with range? (Ranges vary between labs) so always needed to interpret accurately.

[Hidden in reply to PurpleNails]

Medichecks test (Same Time June 2023) TSH: 0.005 (0.27-4.2) T4: 13.4 (12-22)

GP Testing (Same Time April 2023):

T4: 13.6 (12.0-22.0) TSH: 0.01 (0.27-4.2)

[SlowDragon Administrator]

We see many early stage Hashimoto’s patients with transient hyperthyroid results and symptoms misdiagnosed as Graves’ disease if the correct antibodies haven’t been tested

To confirm Graves’ disease medics should always test TSI or Trab antibodies …..ideally BEFORE starting Carbimazole

What were TSH, Ft4 and Ft3

Have you had vitamin D, folate, ferritin and B12 levels tested

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...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

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

[Hidden in reply to SlowDragon]

Hello, thank you so much for your response. I really appreciate your insight, help and all the links shared. I am currently working with a nutritional therapist to manage symptoms, but continue to consume a diet free from gluten (1yr), sugar (6months), and dairy (10yrs).. I have been checked for Coeliac but that was probably 5 years ago now so have not had a recent test. In your experience do you think it would be possible to develop later in life as gluten makes me feel so unwell or maybe more of an intolerance.. 

Several blood tests over the last few months, Vit D is now in normal range (previously low), ferritin normal but iron slightly high, B12&Folate were normal when last checked earlier this year. Thyroid tests - initially gp suspected hashimotos as my results were showing normal TSH and low T4 along with elevated TgAb (as per your message not sure if the right antibodies have been check here?) however more recent tests have continuously shown normal T4 and low TSH (0.01) as this hasn’t changed and due to the symptoms I’ve been experiencing they have trialed me on Carbimazole 5mg and referred me to the endocrinologist.Have another round of blood tests this week for T4/T3 and TSH.

Feels like a bit of a mind-field! 

[SlowDragon Administrator in reply to Hidden]

can you add actual vitamin results and ranges

Have you had Thyroid Peroxidase antibodies (TPO) tested too

How high were Thyroglobulin antibodies (TG)

Early stage Hashimoto’s, as thyroid cells break down and release excess hormones you can feel hyper……but it’s only temporary.

No point retesting for coeliac

[Hidden in reply to SlowDragon]

Thanks for your response, here's the most recent results & ranges:

Vitamin Ranges (medichecks test June 2023):

Iron 34.7 (5.8-34.5)

TIBC 53.6 (45-81)

UIBC 17.7 (24.2-70.1)

Transferrin Saturation 64.7 (20-50)

Ferritin 56.6 (13-150)

Vit D: 75 (50-200)

TSH: 0.005 (0.27-4.2)

T4: 13.4 (12-22)

GP Testing( April 2023):

T3: 13.2 (3.1-6.8)

T4: 13.6 (12.0-22.0)

TSH: 0.01 (0.27-4.2)

TgAb: 24.3 (0.0-20.0)

GP Test Early 2023:

B12 & Folate, unfortunately unable to access the results.

Interesting note on the TPO antibodies and scan, thats helpful to understand, thank you.

[SlowDragon Administrator in reply to Hidden]

SeasideSusie or humanbean may comment on iron results

helpful website on complexity of iron test results

labtestsonline.org.uk/tests...

[Hidden in reply to SlowDragon]

Thank you for the website link

[SlowDragon Administrator]

TPO antibodies less likely to be raised if on strictly gluten free and dairy free diet

Many Hashimoto’s patients with high TPO antibodies see slow steady reduction in TPO antibodies when they go gluten/dairy free

request ultrasound scan of thyroid too

[pennyannie]

Hello BiteByByte and welcome to the forum :

In order to know which of the 2 thyroid auto immune disease you are dealing with there should be a blood test there detailing which antibodies were found over range and positive at diagnosis.

Initially both Graves and Hashimoto's can express with similar symptoms and Carbimazole should only be prescribed if you are positive Graves -

Can you see mention of a TR ab - a thyroid receptor blocking antibody wording and number/range ?

Or a TSI - a thyroid receptor stimulating antibody - wording. reading and range ?

Carbimzole is an Anti Thyroid drug and blocks any new thyroid hormone production and slowly your T3 and T4 levels should rebalance themselves - within the ranges at around a 1/4 ratio of T3 to T4. and hopefully you will feel more comfortable.

Do you have the ranges for these blood tests above where you state a T3 at 13.20 with a T4 at 13.60 with a TSH at 0.01 ?

For Hashimoto's we are looking at either TPO - Thyroid Peroxidase antibodies and / or the antibody - TgAB - Thyroglobulin :

Some people have both Graves and Hashimoto's running at the same time and Graves treatment takes precedence as seen as life threatening if not medicated.

For Graves and AI disease - elaine-moore.com

For Hashimoto's - thyroidpharmacist.com

[Hidden in reply to pennyannie]

Hello, thank you for your helpful response and information provided.

Sorry, have updated the ranges - forgot to add them in. Here's a snapshot from above.

GP Testing( April 2023):

T3: 13.2 (3.1-6.8)

T4: 13.6 (12.0-22.0)

TSH: 0.01 (0.27-4.2)

TgAb: 24.3 (0.0-20.0)

TgAb is the only ones I have access too, and I am unsure if any others were previously checked as I am unable to go back far enough to see.

Hopefully the levels balance soon, feeling all out of sorts!

[pennyannie in reply to Hidden]

OK - so you can see that there is an imbalance between your T3 and T4 :

If you look at the ranges you can see the base number of T3 and T4 are around a 1 / 4 ratio with the T3 starting range number being around a quarter of that of the T4 starting base number.

For some reason your T3 has shot up over range and now almost doubled itself at 194 % over the range whilst your T4 is still in the range at around just 16% -

Hopefully the Carbmazole will sufficiently block your thyroid hormone production and this T3 overshoot will slowly reduce down back into range - your T4 is already low in range - so hopefully this doesn't get impacted too much in the process - rest and try and relax - as your body is at a heightened state and symptoms of excess T3 can be quite horrible.

If you can't see any other antibody tests I presume you are waiting on them ?

[Hidden in reply to pennyannie]

Thank you for your insight on this, I really appreciate it. Yes, there does appear to be an abnormality with the T3 results. Hopefully things settle down and I feel well again soon. Not waiting on any further anti body tests at the moment, they are quite challenging to get on the NHS so have been looking today at some further medichecks tests that cover the antibodies, as I think this would be a helpful thing to know.

[pennyannie]

OK then - once in the Medicheck website enter overactive thyroid in the search bar and you should get up the TSH Receptor Stimulating antibody blood test and an article explaining further what has / is going on.

I can't help but think you already have this blood test, maybe check with your doctor first as it's a lot of money for a duplicate report, and your doctor is not obliged to accept this private result anyway as the NHS must run this test themselves as the medical evidence of why they have prescribed the AT drug.

It may just be sitting in the tray, waiting to be processed, as thinking back to 2004 - my antibody blood test was back in around 48 hours from my original blood test when I went to the doctor with symptoms of exhaustion and insomnia.

[Hidden in reply to pennyannie]

That's helpful, thank you. Will have chat to the GP.

[SlowDragon Administrator]

Did you check if carbimazole has lactose in it?

[Hidden in reply to SlowDragon]

Yes, and unfortunately it does. Discussed with GP and there are no lactose free alternatives avaliable. It has created unpleasant side effects, but I have found taking it before bed means I am able to sleep off most of the discomfort.

[pennyannie in reply to Hidden]

There is an alternative, older, anti thyroid medication - PTU for short - Propylthiouracil - maybe have a Google - generally prescribed during pregnancy and to anyone who can't tolerate the Carbimozole ?