The Joys of Graves' Disease and other Autoimmune conditions

Sevencasper · January 31, 2024, 3:42am

Continuing the discussion from Sugar Alcohols Ruined My Health:

I’ve added too many links, so I’ve started another topic

That sounds like vertigo. I have had it since November when I had shingles. I still have “post herpetic neuropathy” but in looking that & vertigo up, I have also found that there is some evidence that it (Vertigo) can be due to Thyroid autoimmunity affecting the vestibular function in your ear.

It is a real can of worms…

This screenshot is part the Abstract of the document below:

Also this document:

And this one too:

muth · January 31, 2024, 4:02am

Wow, this is a treasure trove of info! Thank you @Sevencasper My doc is the editor-in-chief of Clinical Thyroidology for the Patient, a monthly online journal that presents summaries of research studies written in lay language to allow thyroid research to reach the widest possible audience. And I haven’t even read it yet! Maybe I should, ya think?

I was on methimazole just like my cat, Nikko. Want to hear a funny story? Turns out my doctor is a cat lover. When I told him about Nikko and his health problems he looked very concerned and asked me questions about him. I was just reading my appointment summaries on my online chart and it looks like he mixed up Nikko’s medical history with mine. He mentioned something about kidney levels being in the normal range and we’ve never addressed my kidneys, lol. I’ll have to point that out to him next time I go in.

ETA: I forgot to mention that I’ve noticed tinnitus in the past several months. Thx for all this info

Sevencasper · January 31, 2024, 4:55am

No probs, I’m glad you’ve found it useful.

I visited the https://www.thyroid.org/patient-thyroid-information/ct-for-patients/ site a fair bit when I was first diagnosed but they don’t talk about the treatment I’m on which was frustrating.
My local doctor kept telling me “I don’t understand your treatment” so I kept searching & I ended up finding a woman who runs a page on facebook ( I know right) who had the same treatment as I am having (anti-thyroid combined with thyroid medication) has been in remission for many years and will answer questions based on research papers in relation to that treatment (Graves Disease-Research News).
The effects of levothyroxine combined with methimazole on the clinical efficacy of hyperthyroidism treatment - PubMed

So now I search Pubmed for most things, you just have to remember that “Correlation doesn’t equal Causation” & not everything will be applicable just because there is a paper on it.

(edit - link)

muth · February 3, 2024, 2:32am

So what exactly is your treatment? When you say your local doctor do you mean your primary care doc? Were you prescribed this treatment by an endocrinologist?

muth · February 3, 2024, 2:51am

@Sevencasper Idk if this helps but I did find one article in the journal I mentioned on the “mixed treatment”. They call it “Block and Replace”. What I got from it is that it’s helpful for patients who don’t respond well to just METHIMAZOLE.

Sevencasper · February 3, 2024, 3:19am

Thanks for that link muth. Yes you are right, that is why it is used, it seems that it is too aggressive though?

My treatment is similar to block and replace but they use much lower doses.
I started on 15mg Carbimazole (Methimazole) and then reduced to 10mg then added in Thyroxine 50mg alternate days then 100 one day, 50 the next.
My understanding is that the longer you stay on Methimazole the better as it also has an immunomodulatory effect on the antibodies.

Seems to be working - except I have been symptomatic the whole time (ongoing cogfog/fatigue/sob/heartpalpitations).
I haven’t swung completely hypo on this treatment and have now been on it two years.
Antibodies have continued to come down and eye symptoms have also eased.

I believe (but cannot find evidence) that this treatment is being used because I also have Thyroid Eye Disease and the antibodies have to come down for that to resolve.

Our local doctors are called GP’s (General Practitioners) - I think that’s the same as your PCP’s?

I do see an Endocrinologist and he prescribed the treatment. Unfortunately he never had appointments available to discuss my treatment (he would just phone me with results/instructions & that never gave me time to discuss any of my concerns).
On this treatment, blood are only taken monthly until you’re euthyroid and then 3 monthly or more apart (I have learn’t this by experience).

My GP at the time who kept telling me “I don’t understand your treatment” would always refer me to the Endo (& I couldn’t get an appointment/appointment wasn’t due for three months).
After ignoring that I was vitamin D deficient for at least three months (confirmed and treated by the fisrt Endo) the GP eventually said to get a second opinion/change Endo.
So I was transferred to one in the same practice as the first who “was willing to keep me on the same treatment”.
I get appointments with him but whenever I mention I am symptomatic, he tells me there is not reason for this refers me back to the GP who does nothing.

I left that GP and have since spent 18 months trying to find another which is difficult as they are few and far between out here in no-mans land.
I have been trying to learn as much as I can to manage as much as I can myself and trying to ascertain what my symptoms are related to (I also have epilepsy/CPTSD/endometriosis/perimenopause) and whether they can be resolved.

As I was getting nowhere with GP’s, I have since returned to a psychiatrist who consults locally an he is helping me investigate these things (not his actual job but he listens and is helpful so far).

I don’t have a regular GP, the new clinic I go to is only staffed by Locum GP’s - a different one every month.

I am having blood taken next week and will see a (random) GP the week after to get my results.
antibodies have continued to lower and have not been aggravated by the shingles.

What treatment are you on?

(edit - sorry I wrote a novel )

muth · February 3, 2024, 4:42pm

Holy Moly! You’ve got your hands full. What I don’t like about your care is that you don’t have a regular GP that knows your medical history well. Ideally, we should all have a medical team of care providers, your GP, PCP, etc. and our specialists who are usually referred to by the GP. If you trust your GP you can usually trust who they send you to. This, of course, when we live in a world that makes sense.

I’m fortunate that I don’t have Grave’s Opthalmopathy (did I say that right?) I went into remission about a year ago and in no need of METHIMAZOLE for now. However, I’ve been in remission in the past and came out of it. I understand that if in remission for a year or more there’s good chance you’ll stay in remission. The longer the remission the better your chances. He told me that it’s a 50/50 chance for remission on the outset.

Whatever I’m experiencing now is confusing. I usually know when I’m coming out of remission because for me it starts with heart palpitations then the shaky hands. My blood pressure spiked recently and Grave’s can do that, too but I don’t have the palpitations. I do have a bit of vertigo and the tinnitus. All that can also be caused by hypertension. I messaged my Endo doc from the MyChart website and he did get back to me for an appointment this Wed. Meanwhile, my PCP told me to try my blood pressure meds. They’re a low dose of Hydrochlorothiazide (diuretic) and wouldn’t hurt. I do feel a tiny bit better. After all, my family has a history of hypertension, stroke and heart attack. It probably finally caught up with me. Previously, she put me on them but my pressure fell too low and she told me to stop. Maybe my “free time” is over, lol.

I wrote a book too. I just have an obsession with thyroid conditions because ever since the “70s” there has been an uptick in thyroid problems amongst humans AND cats. There are theories about that but I won’t get into that now. Take care…

Sevencasper · February 4, 2024, 4:47am

verbal diarrhea follows

I don’t like it either but you can’t make a doctor care.
I brought up all my issues at my recent meeting with my neurologist, he said that I should write a letter to the local Member of Parliament and wrote me a letter saying this. How am I supposed to find the energy to do that when I can’t even manage my own health

I’m glad you don’t have GO/TED it’s shit & just another difficulty to add to the list. Thankfully mine was “mild to moderate” and has now eased to mild (I bet whoever made that classification never had it).
That was the main reason I gave up Nicotine.
I asked my Endo - is it the smoking or the nicotine - he said more likely nicotine as it can stimulate the antibodies (although I have found a study published last year saying it can suppress it - linked last)
Of course, very little evidence available to say this. Most studies refer to smoking…
I based my decision on these articles:

This is the new article

That is awesome. I hope to get there one day.

That is my understanding too.

Further to that; my understanding is that staying on low dose methimazole for ever longer than that can increase the chances of remission as it keeps the antibodies low.
That group I follow have articles that discuss staying on Methimazole until your antibodies are undetectable before coming off.
The thyroid hormone is used so you can say on the Meth. longer (to stop you swinging hypothryoid).

It sounds tricky. It’s hard when there are other medical conditions to deal with. I hope your doctors are better than mine and work it out quickly

I looked that up, I was only prescribed a beta-blocker for heart palps and tremor. I too, had to come off those once my thyroid levels were in range as it dropped my blood pressure too - on activity.
Problem is, ever since I came off, Ive had the same symptoms as being on them
I have also had heart investigations done, holter monitor, echocardiogram and VQ scan and got a clean bill of heart health.

I’d be interested to read it.
It doesn’t surprise me that there’s been an increase, they keep adding stuff to our food, Iodine included which is a major trigger for Graves’.
As are respiratory infections. God knows what else is. I’m sure you can tell me! I love theories

Apparently for Graves’ you need a genetic link and a trigger. My genetic link is a history of familial autoimmune disease (maternal grandmother Type 1 diabetes).
Well the trigger, that’s really tricky.
Might have been the Jibby Jab but I had eye symptoms for a good year or so prior.
So I probably just had a regular cold or flu that triggered it or possibly hayfever?
I apparently had that around the time my eyes first started playing up but I only saw a regular Ophthalmologist not a specialist Ophthalmologist so I’ll never know.
Could also be hormonal changes, there is some evidence that they can be a trigger.
I’ve been in peri-menopause since about the same time as the “hayfever” too.

I wish I knew my specific trigger, at least then I could avoid it from being a trigger again.

Do you know your trigger?

Mix_and_Hope · February 4, 2024, 4:50am

I was diagnosed with SLE Lupus 20+ years ago, it took 3 years to find the right doctor that helped treat me, and took a year for the meds to start working. a rheumatologist , that retired last year.
Vertigo was just one of the problems, which ain’t no fun. Paracarditis was another, and a couple of years ago I started with the arthritis . Getting old ain’t for sissy’s . God Bless.

Sevencasper · February 5, 2024, 3:47am

It’s so frustrating that autoimmune issues take so long to be diagnosed. I’m glad you eventually found the right doctor. Another frustration I guess when they retire. Have you found a new one that is helpful?

Vertigo is not at all pleasant. My understanding is that there are different types. Does yours ever resolve?
I tried the Epley Manoevre the other day for mine, it made me feel worse for a couple of days and I was sure I had done the wrong thing but it’s gone now

You’ve got that right

Mix_and_Hope · February 6, 2024, 2:01am

No, my regular rhumy, was 11/2 hour drive, I’m trying to. Find. Someone local. No luck yet.

muth · February 7, 2024, 3:12am

No, Ha ha, I meant that I wrote a long post like you

I haven’t been on the forum because too much is going on and I really don’t feel that well. I’m seeing my endo tomorrow. I’d like to read everything you posted but I just can’t right now. My brain can only handle sleep and meditation music

Take care and thanks for all the in depth information.

Sevencasper · February 7, 2024, 3:49am

I told you I had cog fog

I had bloods taken yesterday, we’ll see what we see in a week

I hope you feel better soon

Sevencasper · February 7, 2024, 3:52am

I hope you find someone close.
If I’d have known before we moved here that I was going to get the diagnosis I now have, I would have moved closer to the city. Most specialists here are minimum 3 hours one-way. Painful.
Most do telehealth consults though, can you do that where you are?

Mix_and_Hope · February 7, 2024, 5:30pm

Not that I know of, I’m pretty sure that wouldn’t work, because of the blood work that is done on every visit .

Sevencasper · February 8, 2024, 3:26am

Fair enough

muth · February 9, 2024, 4:09am

I had bloodwork done yesterday, too. It’s confirmed, I fell out of remission. My methimazole is waiting for me at the pharmacy, wish I had it right now, it works pretty fast for me. Iirc, I was in remission for two years or more. I thought I had this thing beat, curses! For the first time, my Vit D was off, too. It was low. He wants me to take 2000 IU per day. Well, at least I know I wasn’t having a stroke! Three of my symptoms were similar to a mini stroke and I was flipping out so bad I almost made myself have one. All reasoning goes out the window when your thyroid acts up.

It really is a benefit to be close to all the teaching hospitals here in Boston. My lab results were posted on MyChart several hours later and my doc messaged me today with his summary. REading the results myself, I already had my concerns. Cripes, between my cat Nikko having hyperthyroidism and myself having it, I’ve become adept at reading these results. I gotta admit, though, this disease is a hot mess to wrap your head around.

muth · February 9, 2024, 4:36am

I never heard of that. I understand that they don’t really know how it starts, in the first place. Same as much of the autoimmune diseases. Doctors are baffled by them. I don’t have anyone in my family with autoimmune disease or any relation to it. I have a long family history of heart attack, stroke and cancer, though.

I have theories on Grave’s and hyperthyroidism. There was an uptick in feline hyperthyroidism starting in the 1970s. That’s when many chemicals identified now as endocrine disruptors hit the market. Have you ever read “The Dirty Dozen”? Do you remember when fire resistant “everything” came out, mattresses, furniture, baby pajamas, carpets, etc.? Idk if there was also an uptick in human hyperthyroidism but I just discovered that there was a rise in GD during SARS-CoV2, 2021 and with the newly released vaccines but don’t quote me on this, I was Google fooing.

Increased incidence of Graves' disease during the SARS‐CoV2 pandemic - PMC.

As for me, I got it way before Covid.

muth · February 9, 2024, 4:39am

One of Bette Davis’s famous quotes, ey? Is the arthritis in your hands?

Sevencasper · February 9, 2024, 6:30am

Oh no, I’m sorry you’ve come out of remission. I’m glad it wasn’t a stroke. It is always hard when we don’t know for sure.
I had an undiagnosed vit d deficiency in 2022, it made me feel horrible. It might take a few months on that dose for your vit d to shift. Depends on your level I guess. Mine was borderline low & the GP wouldn’t acknowledge it, the endo did and put me on 3000 IU, it took 3 months to get “in range” with additional sunlight. We are all different though.

I wish our results were visible sooner, I used the Government health website but my results are normally locked until after my Endo appointment. Makes it hard to question anything that is not in range and any concerns you have.

Did you get your Trab (Thyrotropin Receptor Antibody) measured? Some Dr’s don’t use that though, only Thyroid Stimulating Immunoglobin (TSI) but TSI only shows Stimulating Trab not Blocking Trab. Apparently we can switch from one to the other (blocking trab causes hypo symptoms).

What is your treatment plan after you become euthyroid again?

Your “trigger” can be an overdose of iodine or a respiratory infection edit* virus (yes covid & the jab- there have been soooo many people diagnosed since then - just check the fb groups! and there are a few confirming articles in pubmed)
As for those endocrine disruptors - omg - yes - they would be a trigger too.

I wonder if you have autoimmune gene that you’re not aware of, something that you’re so low level for that there are no symptoms? Is that even possible? IDK.

My eye symptoms started first, well before covid too so god knows what my trigger was.

Those triggers though ^^^ we need to be aware of, they can cause relapse I believe.