I posted about red mark headaches which have persisted after terrible feeling of unwellness each time. MRA/MRI ruled out aneurysm risk and confirms possible migraine attacks but doctors are still completely baffled(and not helpful). Blood work is showing hashimotos antibodies are slowly rising over two years whilst graves antibodies are decreasing. Methimazole dose around 5mg a day and since 2021 continues to make me feel awful. Crohn’s and endometriosis still completely flared with endometriosis marker CA125 responding to orlissa (stops estrogen I think ) slightly but not to other endometriosis drugs. Fallopian tubes are filled with fluid/ endometriosis and don’t want surgery just want this to clear . Has anyone tried low dose naltrexone for autoimmune conditions ? Has anyone had their iodine tested the most accurate way (what is the most accurate way- urine?) to determine if a change in iodine level created sudden diagnosis of graves / hashimaltos? They can be occurring at same time, research shows. My diagnosis in 2021 after more than 3 decades of endometriosis and crohn’s was graves after a surgery (I thought perhaps due to shock). The hashimotos antibodies were not up st that time (2021) but have come up while graves ones are still there and now the graves ones are lower than the hashimotos ones but my doctor (specialist Endocronolgist) refuses to acknowledge that this is important. I must solve this on my own my doctors are useless in root cause they only care about bandaid on the symptom.
Anyone tried LDN? still red mark headaches, ext... - Thyroid UK
Anyone tried LDN? still red mark headaches, extreme fatigue, and now TPO antibodies higher than graves antibodies 01/2025 update
also has anyone ever tested for systemic candida (which did not appear in blood work)? I am convinced that the Crohn’s and endometriosis I have had since a teenager (or even earlier as I was already symptomatic as a kid) are linked to extreme overuse of antibiotics when I was a child. So many antibodies were used in me that I became allergic to almost every antibiotic and now have anaphylaxis to them (can only take a select few) and must wear a medical bracelet. Having my gut biome wiped so many times as a kid I truly believe contributed to severe stage four endometriosis and Crohn’s diagnosis before freshman year in college. Have had CFS(chronic fatigue syndrome) multiple decades and the Crohn’s and endo not in remission and then suddenly graves in 2021. I want to know if any members have had success in gut biome testing (what is the most accurate way and what company in USA to use?). I live between USA france and CH and also can get to UK (brother lives there) but need accurate testing for iodine and gut biome . I was taking pre natal vitamins with iodine and had never taken it before except random times eating seaweed just before the graves diagnosis after Crohn’s surgery. My blood never shows any type of c reactive protein spike nor sedimentation rate that would show inflammation- my Bloods never seem to show any inflammation yet the video capsule swallowing and colonoscopy and endometriosis intravaginal ultrasounds and many more tests confirm still crihns and endometriosis and the Bloods confirm graves and now TPO/ hashimotos antibiotics . My t4 has been stable all of 2024 and my TSH was below .0005 from 2021 to 2024 then by using L carnitine and acety l carnitine with the methimazole (which had been 15mg) the TSH rapidly finally rose to almost too high (it was past 3 at the top of high normal). I discontinued l carnitine/ acetyl l carnitine and kept a dose of 5 mg methimazole. I am 100% sure that my autoimmune conditions are all related to a deregulated immune system and began to try low dose naltrexone compounds by rye beach compounding Pharmwcy rye NY. I have only been on it 4 days last week and then had to take a break it was making me feel jumpy- doss that mean it is working ? These autoimmune conditions I know are more overarching than just the thyroid but writing in the hopes that anyone who has been sufffering decades of autoimmune issues has perhaps found some solutions in LDN or testing iodine and in restoring gut biome (and what is the most accurate way to test gut biome for which strains are depleted since childhood ). Thank you all who read.
Do you have recent thyroid and vitamin results and ranges to add
TSH, Ft4 and Ft3
Vitamin D, folate, ferritin and B12
What vitamin supplements are you taking
Have you had coeliac blood test ?
Hashimoto’s and Graves’ disease patients often find strictly gluten free diet beneficial……but test for coeliac first
Hello Questing :
You are right in saying and feeling as though the Anti Thyroid is ' just a sticking plaster ' as Graves is an auto immune disease for which there is no cure -
In the UK we have the option of 2AT drugs - Carbimazole or if planning to have a baby and or/in the first trimester Propylthiouracil ( PTU ) is prescribed -
Do you have an alternative AT drug treatment option to Methimozole - are you Stateside ?
If your TSH has bounced back into range - I would tend to think this phase of Graves is now over and your Graves antibodies are now not ' sitting on ' and lowering TSH readings which in turn causes the blocking or stimulating of thyroid hormones and the cause of ones ill health -
When the thyroid is under attack from the immune system there is some overlap in AI conditions and we do see Hashimoto's ( o/range TPO / TgAB antibodies ) running alongside Graves - but since Graves is considered life threatening if not treated - treatment for Graves takes precedence -
and for Hashimoto's - there is no treatment as such - as the over production of thyroid hormones is transient and the T3 and T4 should fall back down into range themselves - but longer term the thyroid becomes disabled with the patient needing to be prescribed thyroid hormone replacement.
You are quite right - Graves is a poorly understood and badly treated Auto Immune disease with stress and anxiety being common ' triggers ' and I've read of several forum members getting a diagnosis after ' other ' medical issues - I was diagnosed 3 months after I was physically threatened and verbally abused by a man I employed as my assistant manager -
So, yes, I too can tick box that ' shock ' was a reality for me - and even worse ' the going through of the company grievance procedure ' which resulted in my resignation back in 2004.
Though my learning curve with Graves only started around 8 years post RAI thyroid ablation when much more ill than I have ever been - as I wasn't given the option of staying on the AT longer term.
So - the most rounded of all I researched is that of Elaine Moore - books and website - elaine-moore.com - and Elaine is Stateside and there is an open forum much like this UK platform - and within her website a section regarding alternative and natural treatment options you might like to dip into - if you haven't already.
As for Hashimoto's many forum members follow the research and suggestions of Dr Izabella Wentz who again, is Stateside, and writes as thyroidpharmacist.com
The most recent research is detailed below :-
I've been taking LDN for about ten years. It has definitely helped with both Hashimoto's and Crohn's. Don't expect a miracle cure, but it's worth a try and unlikely to do any harm.
thank you so much the three answers above. I will be adding my bloodwork results later today to this message after my disability hearing-. the fatigue became so massive this past year that I felt catatonic and haven’t been able to function. Will reply in some hours adding the blood result data
Might make sense to start a new question / post rather than tack new information on what is seen as an ' answered ' question :
We can look back at this post for reference -
or you could link in the above people back here by typing in their user names one by one by typing @ directly before a user name and as you start typing in a name a tab appears offering you user names - matching your typing.
eg Questing which when posted appears in blue - but without the @
Some peoples Alerts buttons are not working - so a new post is probably the easiest option.
Graves disease.
Diagnosis Hashimotos Based On Antibodies Only
Need help with my blood test results please! 
Iodine ~ a collection of useful information ( because the search facility on Health Unlocked is totally pants)
Really confused still....
