Headaches

[Titch18]

Hi everyone

I was diagnosed with Graves in 2021 and had treatment which put the Graves in remission. I am starting to feel unwell again and getting headaches and just feeling lousy but wondered if the headaches is a symptom of Graves. I do suffer with migraines. I am having my bloods done tomorrow so hopefully will find out soon if the Graves has returned. Thank you

[Forestgarden]

Hi there, headaches can definitely be a sign of changing hormone levels. Have you other hyper symptoms?

[Titch18 in reply to Forestgarden]

Hi

Yes tiredness, nauseas and weakness in my legs especially noticed when climbing the stairs and generally feeling unwell.

[PurpleNails Administrator]

I have hyper from a nodule when my thyroid levels are high or fluctuating (eg dose changes) I get more frequent migraines.

I told the dr this and said my levels were too high & I needed an increase in carbimazole (I knew it was the case I’d seen my results). he practically sneered at me & said nothing to do with thyroid & as thyroid levels were “in range” therefore there was nothing else to do, including looking for alternative causes of worsening migraine.

What was your previous treatment? Were you on an antithyroid for a set time? How much \ how long? Did you have other treatments?

Was Graves confirmed with positive TRab or TSI result? There are other reason for hyper.

Your GP may only test TSH but as you have a history of thyroid dysfunction it important to test FT4 & FT3. Many use private options to do this.

Do you have anything prescribed for migraines?

I was given propranolol along side carbimazole when first diagnosed hyper, but after 2 months the specialist stopped 40mg x3 daily dose abruptly, which should NOT be done. Should have been reduced slowly.

I was put back on propranolol as a permanent migraine preventer.

[Titch18 in reply to PurpleNails]

Hi

Yes I was on Carbimazole when first diagnosed with Graves and then slowly reduced once my ranges were at correct levels. They did do the TRab/TSI test and my T3 and T4 levels. They also prescribed Propranolol. For my migraines I have been prescribed Zolmitriptan as I vomit for a couple of days when they are really bad.

I just wondered if the headaches are connected to the Graves. I am just feeling unwell. I have booked to get my bloods done tomorrow. So hopefully will find out either way. Sometimes I feel in my body that I fluctuate, can this be true?

[pennyannie]

Hello Titch and welcome to the forum :

Graves is an Auto Immune disease that can wax and wane throughout your life, or possibly just be ' blip ' and resolved relatively quickly.

There is no cure for Graves Disease and an Anti Thyroid drug is prescribed to semi-block your new own daily thyroid production while we wait for your immune system to calm down - with your T3 and T4 back in range, and hopefully staying there, with your thyroid returning to normal rhythm and function.

So I'm presuming you were put on an AT drug - Carbimazole or PTU - and now in remission but sense these headaches mean a return of your initial symptoms when first diagnosed ?

Can you confirm you had a positive TRab antibody reading at diagnosis - probably written as a TSH - Thyroid Receptor antibody reading and number - or maybe a TSI reading and number and if you could share your TSH, T3 and T4 readings at diagnosis and what they were when discharged that would be useful:

The NHS generally allocate around a treatment window with an AT drug for 15-18 months and if remission is not found tend to encourage the more definitive treatments options such as a thyroidectomyy or RAI thyroid ablation -

however - if this is a further phase of Graves please seek help and just be aware of the following most recent research :-

suggesting that the longer the patient stays on the AT drug the better the longer term outlook is for the patient -

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

and as for RAI thyroid ablation :-

ncbi.nlm.nih.gov/pubmed/306...

The most well rounded of all I researched is that of Elaine Moore's books and website - elaine-moore.com

[pennyannie in reply to pennyannie]

Good morning -

Just another thought - as you are getting a blood test, please ask to have your ferritin, folate, B12 and vitamin D run as well -

as when metabolism is running too fast as in hyper or too slow as in hypo - the body struggles to extract key nutrients through food, irrespective of how well and clean you eat -

and low levels of core strength vitamins and minerals can compound your ill health further than necessary :

We can advise on any blood test results as to where your thyroid and vitamins and mineral levels need to be maintained for optimal health - as just being in a NHS range somewhere is not acceptable, as some ranges are too wide to even be sensible.

[Mhymer in reply to pennyannie]

hi , can I ask a quick question, I was diagnosed with Graves’ disease, and eventually had RAI treatment, the question is will I always have Graves’ disease even though my levels are in range? I started to feel like what I did when my thyroid was playing up, I went to the doctors and they only tested my TSH which was 1.97 , unfortunately i had eaten before hand, because I didn’t know they were going to take my blood then, and they didn’t check my T3 and T4 🤷‍♀️ ……I’m now on 75mg levothyroxine.

[pennyannie in reply to Mhymer]

Hey there again :

Looking back I see I have replied to you before :

Yes, you will always have Graves - it is an Auto Immune disease - there is no cure -

but with the thyroid removed / damaged / RAI burnt out in situ -

I would think that the symptoms that you are experiencing now are likely because of either under/ over or wrongly medicated thyroid hormone replacement -

and it's about - where in the ranges your T3 and T4 need to be - and finding that unique balance of T3 /T4 to enable you to regain your health and well being.

Testing just a TSH - especially after RAI treatment is not enough -

your HPT axis - your Hypothalamus - Pituitary - Thyroid feedback loop is now broken -

causing the TSH to be a very unreliable measure of anything - and you must be dosed and monitored on your Free T3 and Free T4 readings -

and this is why many forum members are forced into arranging their own Private blood tests , posting the results on here, and receiving considered opinion from other forum members who have managed to restore health and well being for themselves.

[pennyannie in reply to Mhymer]

To look back at all your previous questions - just press the icon saying Profile - on this screen - on my laptop it is top right - maybe bottom left on a mobile ? -

anyway on your Profile page you will see everything you have ever written on this forum and all your replies.

If you want to read someone else's profile - just press the face icon alongside their name.

Hope that makes sense.

[JuSa44]

All the best. I am also in the midst of a Graves relapse and I feel pretty miserable, although I think I am getting better but very slowly. I also suffer from migraines. Graves and migraines - intense! I hope you feel better soon.