Hi

[Tennis1011]

Hello there from Dublin,!

I’ve been on carbimazole for Graves Disease for 1.5 years. I know symptoms vary for different people but my main symptom was I couldn’t sleep. I’m on carbimazole now and sleep ok, when I’m not pre menstrual, on my period or for the few days after my period has ended. For those time I also feel flattened and sick as well as headaches and diarrhoea, not to mention feeling down. I have to drag myself around. Also heavy periods. This is really affecting every aspect of my life. As am mid 40s and am now on HRT as hoped it will solve the problems but It doesn’t help much.

My GP says he can’t help. And I’ve been unable to find a GP who has an interest in thyroid and fertility.

Has anyone else in this community had dreadful periods and PMT since being diagnosed with Graves (or in carbimazole)? Or am I the only one who thinks there’s a connection between the two? I’d love some supper with this.

Yours truly

[PurpleNails]

Hello and welcome

I take carbimazole as I have a solitary hyper functioning nodule. I have found that when my thyroid levels are at the low end of thyroid range my cycle gets shorter, heavier and symptoms far worse, It’s very common & definitely not just you.

Do you have regular thyroid function test? I have mine done 6 weekly and my carbimazole dose adjusted. Ensure the FT3 & FT4 is reviewed not just TSH. GPs do not always complete a full thyroid evaluation. Also important to test vitamin D, folate, ferritin and B12.

Ideally thyroid antibodies (although this is usually only done by specialist). Presumably your antibodies were tested at least once to confirm your Graves?

[Tennis1011 in reply to PurpleNails]

Thanks so much for your reply PurpleNails. Yes I get my thyroid function tested regularly. Glad to hear I’m not the only one with terrible period related symptoms- despite searching the internet Including academic documents I have not found anything about it before, so it’s great to get your message.

Yes I’ve had the antibody test but my consultant really doesn’t tell me much is feeling like I don’t understand the finer details of this illness.

I hope you are doing well.

Best wishes

[Tennis1011 in reply to PurpleNails]

Hi PurpleNails,

Can I ask you about thyroid rang that you mentioned in your message? You say that “when my thyroid levels are at the low end of thyroid range my cycle gets shorter, heavier and symptoms far worse”. What do you mean by low end of thyroid range. It seems obvious but I don’t get it so would really appreciate if you’d explain please.

Inga

[PurpleNails in reply to Tennis1011]

Here is an example of one of my thyroid function test.

TSH <0.01 (0.35 - 3.50 )

FT4 23 (8 - 21) 115.38%

FT3 7.8 (3.8 - 6.0) 181.8%

The normal range is shown in brackets. So my thyroid levels FT4 & FT3 are above range. The TSH is suppressed, trying to tell my thyroid no need to produce more.

When my thyroid levels are low, or under range I have worse PMT.

I always obtain my blood test results & compare my symptoms to my results and look at the trend my results are going. Doctors tend only to look at each result in isolation, not the whole picture over time. You also need to ensure what’s been tested, often things are mysteriously missed off by the doctor. There can also be processing or sample error which get lost in the system. I was once informed all normal no further action & 7 months later I found out the thyroid test never came back, receptionist just looked at what was there and didn’t pick up something was missing. Also, testing labs automatically set up not to complete FT4 and FT3 if TSH is in range. Doctors & admin also can also just totally miss a red flag or it’s borderline and the doctor says it’s normal / fine / in range.

Then I use this site, often shown on here, to calculate where I am in the range

chorobytarczycy.eu/kalkulator

Always get a printout, don’t accept verbal / handwritten copies as they are open to errors and you also need to obtain the lab range for each result. The range between labs are different which I why you must get them.

[Tennis1011 in reply to PurpleNails]

PurpleNails, the information and insights you have shared here are very valuable to me. Thank you

[Suin]

We’re all on a learning journey.

A lot of people on HealthUnlocked get their own bloods done online and take advice from the admin here.

More support than most doctors and consultants.

[pennyannie]

Hello Tennis and welcome to the forum :

I too have Graves but I was in my 50's when diagnosed so can't help with your immediate question.

You might like to dip into the one and only designated website for Graves Disease. It is stateside and organised and run by Elaine Moore. Elaine has Graves and went through RAI in the late 1990's. Finding no help wit her continued ill health she started to research this poorly understood and badly treated autoimmune disease and wrote a book.

Roll on several years and several books there is also a very well researched website and it covers all aspects of Graves and there is also an open forum much like this amazing site where you can ask questions of the community and of Elaine herself, should you prefer.

[Tennis1011 in reply to pennyannie]

Thank you Pennyannie. I found Elaine Graves site and have enjoyed reviewing it - you are kind to let me know

[pennyannie in reply to Tennis1011]

I had to read it one page at a time, as her comments on RAI were directly affecting me and I was very unwell and frightened to turn the pages - so never enjoyed any of it in reality but necessary reading to know how to get back to being relatively well after the event !!!!