Anyone dealing with Hashimoto's?

SophiaMarie

I was diagnosed 3 years after the BC. To get back in shape after the BC, I joined a survivor exercise class, did a bootcamp with a trainer, but nothing would help. I was more exhausted than ever, and gaining even more. My initial diagnosis for hashis was borderline, but my symptoms have increased tremendously over the last six months. Insurance changes have delayed my follow up appt until January, but I know at the most, they'll just increase my synthroid. What I really want is help dealing with the autoimmune end of it. I just made an appt with a functional med dr who has had hashis herself. But it will be several months before I get in there.

Meanwhile, I've been trying to get myself into the paleo autoimmune protocol again. I tried it for a month last Spring, but it wasn't long enough. I know how hard it is for me to stick with it, so I'm working into it gradually this time. But I don't even know anymore if it will work. I haven't been taking all of my usual BC supplements because most are for building the immune system and apparent that's doom if you have hashis. And being on tamoxifen, limits some of the supplements I could take that can help with hashis. I'm a bit frustrated now. Hoping there's been someone else here that has some experience with getting through this!

I think I'm dealing with a flare right now, so am a bit more desperate than usual lol! Right now I'm incredibly stiff, have awful joint pain, exhaustion, and feel off. I should add, after the sobering BC diagnosis, I realize that I'm not above anything that threatens my mortality, so I'm also wondering if this is even because of the hashis or if there's now something ELSE. I'm dealing with. I've oftensaid that I was totally healthy until BC! Any tips, tricks, supplements, ideas, insight, suggestions etc, would be most welcomed!

Castigame

Sophiamarie,

Sorry to hear about hashimotos.

I got hashimotos DX 4 yrs ago.My main symptoms were hoarse voices and frequent sinus infections. The thing worked for me was drop of apple cider vinegar w cup of water at night.

About joint pain, I put drops of olive oil on paper towel to rub on my joints. Fingers hands and knee caps.

And Epsom salt is my favorite remedy. I make glob of epsom salt inside bath tub. Rub it on my hands. Put exfoliating gloves on. Rub remaining glob all over my body while listening to my choice of music. Wait as long as I could. Turn the water on. Soak as long as I could.

I really hope you find some relief soon

DATNY

Try Armour Thyroid, or similar, which is dessicated pork thyroid and has both T3 and T4. Some people don't convert well T4 to T3, which is the active hormone.

I have a Hashimoto diagnosis for 10 years, the first 5 I was on Synthroid and went through what you describe. Joint pain was unbelievable among others. Changing to Armour and increasing the dose did help. Unfortunately, there is still a need to adjust the dose from time to time, when there is progression.

I also went through all the phases you describe above (life style changes, naturopath, bugging doctors to help me address the autoimmunity aspect), with little success in solving the problem. Bringing vitamin D in the mid-range in a blood test (I take 5000 units daily) made a clear difference. Eliminating sugar and cutting carbs, sticking to probiotics and having enough fiber (to feed them) does help, which made me think the leaking gut theory must be true to some extent. Taking regularly fish oil or chia seeds (omega 3 reduces inflamation), being on a good multivitamin, exercising (walk in my case, my thyroid does not like anything more vigurous ) and reducing stress also helps.

After 10 years, I also got my first hyper episode last fall, which I had hard time to recognize since I always had hypo progression without being first hyper.

While all doctors I've seen so far focus on adjusting the dose to reduce the TSH, my current one thinks that the ratio of T3 to T4 is also important. This is something to consider.

I know quite a few people with Hashimoto, some having it for more than 30 years. They are all in same situation. I also know of people who eventually decided to take out the thyroid, and I believe they have the best quality of life and are on a lower dose than the others who still have it.

labelle

I was diagnosed with Hashimoto's in 2010, about 5 years prior to my BC diagnosis, although according to my doctors my slow growing BC had probably been there for at least 8 years. That's how long it took for it to get big enough to be seen on the mammogram. So which came first is hard to say.

I'm pretty much going to echo much of what DATNY has already said. After being diagnosed I was put on levothyroxine. After a certain amount of trial and error, a dosage was found that made my labs look good, but I didn't feel good. I switched from seeing a GP to seeing an endocrinologist, at which point I also switched to Armour Thyroid, which made a lot of difference in how I felt.

I've followed a Paleo dieted for several years now and do believe healing the gut is an important part of dealing with an autoimmune disease and healing the immune system. You DO want a healthy immune system, even with an autoimmune disease. Avoiding processed sugar and gluten are IMO especially important. Even though I find the Paleo autoimmune protocol impossible for follow long term-too restrictive, I need nuts and nightshades, LOL-simply following a regular Paleo diet has been helpful for me. The diet you can stick to is definitely more effective than the one you can't! As DATNY wrote, eliminating sugars and cutting carbs is important and the Paleo diet does this.

I also take 5000 units of vitamin D daily, after finding out several years ago that my levels were very low. I have this tested annually, and this dosage keeps my vitamin D in the good range.

You might also want to have your B12 levels checked. Many people with one autoimmune disease develop others. I have pernicious anemia as well (diagnosed years and years ago) as Hashimoto's and require B12 supplements. For years I had monthly shots, but with the advent of time released B12 have been able to switch to oral supplements.

Selenium is another supplement sometimes recommended for those with Hashimoto's and I think it helps me. So does a good probiotic.

I also believe avoiding toxins is important and I use only natural toxin-free beauty and bath products and buy organic fruits and veggies when possible.

According to my endocrinologist, taking Tamoxifen can interfere with the thyroid works/how thyroid meds are absorbed, so she has kept a closer eye on my labs since I started Tamoxifen and I was advised by her and by my pharmacist, not to take Tamoxifen and my thyroid meds at the same time of day. I take my thyroid meds first thing in the morning (with nothing of course) and Tamoxifen with my evening meal.

DATNY

I am wondering if anyone else has both Hashimoto and Gilbert syndrome, and what is their thoughts about this. Gilbert syndrome is a genetic defect, resulting in a lower amount or defective liver enzyme, and shows up as a slight increase in bilirubin above normal. This happens especially during sickness, periods of stress or after menstruation.

I found out I have this syndrome recently, while undergoing chemo. No doctor voluntered this info, now or in the past. It came out when I start asking questions regarding the abnormal bilirubin level. After looking through my old records I could see the bilirubin was above normal in many of my blood tests in the last 20 years.

Gilbert syndrome is considered a benign condition by many doctors. However, I am wondering if this is truly the case. For instance, my "Hashimoto symptoms" would be at worst right after menstruation, when the amount of bilirubin in blood would also be above normal.

SophiaMarie

lots of good thoughts. I appreciate your replies and personal experiences. I have an MRI tomorrow - I've been through so many with no worries, but realized how uptight I am about this one. I think it's because of how cruddy I feel! I keep thinking that either this is the hashis or something is really wrong.

I've been half doing gluten free, and trying to work toward paleo/aip (yes, I know that half gluten free is the same as all gluten lol). I will keep trying. I've been trying to get regular again with my supplements. Essential oils have helped my sleep tremendously, but I still feel tired and yucky. I have my oncologist and labs next week - I guess I will know more then.

So glad to have your support!

DATNY

Best wishes with your MRI, hopefully no surprises there!

I do have to report some new info that I find interesting, linking autoimmune attacks to cancer.

There is evidence proving that, at least in some cases, autoimmune diseases are caused by cancer. Basically, cancer cells produce a type of protein that is also produced by the tissue being attacked by the immune system. However the protein produced by the cancer cells is slightly different from the one produced by healthy tissue. Thus, although the immune system detects the anomaly and puts up a fight, it also attacks the healthy tissue producing the similar protein. This link was demonstrated for scleroderma, in a paper published in Science in 2013 by Antony Rosen and colleagues from John Hopkins.

Even more interesting, I found that breast cancer cells were shown to have a modified thyroid peroxidase (TPO) gene, which would likely produce a modified TPO protein. TPO is produced in massive amounts in the thyroid, but other tissues, such as breast tissue, produce it too. This was published in Endocrine Abstracts in 2012 by Muller and colleagues at Cardiff University in UK. Having antibodies to TPO is the hallmark of Hashimoto.

Thus, I started to question if my Hashimoto hasn't been caused by the breast cancer. Applying a simple tumor growth model, and taking into account that I have grade 1 cancer (slowly dividing), I get that the cancer began about one-two years before the onset of Hashimoto.

This would explain why in my case things like eliminating gluten did not help ( since gluten wasn't the problem in the first case ) , while other things such as eliminating sugar and carbs had some benefit (I am also Her2 positive, which feads on sugar), along with Vitamin D and exercise which are known to inhibit cancer growth.

Binniebin

hi, I too have Gilbert's and hashimotos. My hashimotos was diagnosed about 5 yrs ago. It is subclinical. Initially my doc put me on thyroid tabs but my cardiologist took me off as my osteoporosis risk is high. Ive always been a cold frog and haven't noticed any other symptoms. Other liver path is also out so Ive gone organic as possible, fully investigated no apparent cause. According to my gastroenterologist Gilberts is benign. Bilirubin has been up for about 10 years but only diagnosed 2 yr ago. Bilirubin will be up with fasting, my onc doesn't expect any impact from Gilbert's to chemo. My BC was diagnosed early sept, gde 3 and mammo and u/s in december all clear. Self detected. So not sure how that fits the tumour growth model? Do you have any input to that. DATNY?

Does tomoxifen arimedex or herceptin affect hashimotos?

DATNY

I was told the same thing, by both my gastroenterolog and onc, that Gilbert syndrome is benign. However, on NIH website, it says that 30% of people with it are asymptomatic, which implies the rest do have symptoms. I believe now that some of the symptoms previously attributed to Hashimoto, especially the malaise felt the week following my period (when bilirubin spikes) might have come from Gilbert syndrome instead.

Regarding the tumor growth model, it might be more difficult to predict it for grade 3 triple positive. For my particular case (grade 1, hormone negative, her2 positive, no measurable growth of the known malignancy by ultrasound over a period of 6 weeks in the absence of any treatment), I just used the rule of doubling the number of cells every 6 months.

Also, I have't come across anything to suggest Herceptin affects Hashimoto. However, hormones work in sync and when one is off, the rest tend to follow to some extent-this is what my MD-naturopath told me (in the context of the importance of regulating insulin). Following this idea, I would think that Tamoxifen and alike would have a detrimental effect on Hashimoto.

tangandchris

The subject caught my eye and I wanted to chime in. I've been reading about Hashimoto and thyroid issues for a couple weeks. I recently had a chest CT that picked up a thyroid nodule. Im going in Saturday for a sono to get a better look. I'm a bit anxious about this but I understand that this is not uncommon. I do wonder how this thyroid stuff might be connected to BC.

Thx for sharing your experience.

DATNY

During the initial phase of my diagnosis I was scanned from head to toes to look for metastasis (had lymph node involvement despite grade 1) except for neck, which my onc refused to order, saying that should not be a problem area. I've read about it, and found out is exceedingly uncommon for breast cancer to spread to thyroid tissue.

However, Hashimoto does bring a high risk of nodules and thyroid cancer, so it's always good to check. I monitor this through my endocrinologist. Wish you good luck with the outcome!

In the Science paper I mentioned above they showed that multiple types of cancer could be linked to scleroderma as long as the diseased cells produce the faulty protein. I assume this could be the case for all autoimmune disease, so it's not necessary that all Hashimoto cases are triggered by BC. In fact, the cancer it had me worried was thyroid cancer. Several of my older friends with thyroid issues have developed it (all got surgery and doing very well).

One reason that made me suspect that perhaps in my case the Hashimoto has been triggered by BC is the fact that all my thyroid ultrasounds showed normal thyroid tissue, even after having this diagnosis for almost ten years. I had a recent one done this fall by an endocrinologist specialized in thyroid disease. As some of my previous doctors, he also commented on the fact that the tissue does not have signature texture modification observed in Hashimoto (this modification appears even in the absence of nodule development). However, throughout the years I tested positive multiple times for thyroid antibodies.

SophiaMarie

well they did find something. Waiting for a phone call to schedule an MRI biopsy. Right under the nipple. I did some quick reading - Ive read about even benign biopsies leading to excision. Should I just see if I can go right to an excision? I don't think it's deep. Crap

DATNY

SophiaMarie, I wish you all the best. I pray it is false alarm or benign. Let us know.

At this point, I would want out of the breast anything unusual as soon as possible even if benign.

tangandchris

sophiamarie...sorry you are going thru this. Hopefully you can get some answers soon.

Btw, sophia marie is my daughters name ❤

I had my ultrasound of my thyroid today. Lots and lots of pics were captured. Not sure if that is good or bad. Just ready for answers.

SSInUK

I too have hashimotos post bc. I have read a bit around reactivated Epstein Barr virus. I had severe Epstein Barr (glandular fever as a teen) and it remains in the body thereafter - over 95% of adults carry it. One of the places it lodges is the thyroid - and is frequently found active in the thyroid where there is cancer. After I finished chemo and rads I had terrible dizziness, which proved to be sinus inflammation - a persistent virus. Another typical site for reactivated Epstein Barr. I have wondered if the compromise to the immune system caused by chemo and rads allowed the dormant Epstein Barr to flare both in sinus and thyroid. It has been posited that Hashimotos among other autoimmune disorders is actually an immune response to EpsteinBarr. I note very clearly that when I am run down or tired both the sinus problem AND Hashimotos flare.

SophiaMarie

that's really interesting SSInkUK - how do they go about determining if you're dealing with Epstein Barr? I have almost constant sinus issues as well.

marijen

I too have autoimmune hypothyroid and long time sinus issues plus allergies

DATNY

I used to have sinus infections too. With thyroid hormone supplement they became less frequent. Since on high Vitamin D dose, I haven't catch any respiratory infections, even when I am surrounded by sick people. I do have antibodies to EBV, which I considered for a while the trigger of my autoimmune attacks. It's hard to tell for sure which one of thesecissues came first, it's a chicken and egg problem.

However, in my case, all evidence points out quite clearly that the Hashimoto was triggered by breast cancer. Considering the two studies I am mentioning above, I am inclined to say this is more than just anecdotal evidence.

Shellsatthebeach

I've been feeling extremely fatigued lately and just thought it was because of work and a busy home life with three kids. At a routine blood screening to check my thyroid levels it was found that my antibodies were in the 900 range (9 is normal range). My TSH level was 11.6. I had this same test done in Nov. and TSH level was in the normal range. How did this happen so quickly? I had Graves through all 3 pregnancies which turned to Hashimoto. Both run in my family. I'm wondering if the Herceptin caused the huge jump in numbers despite being on thyroid medication.

DATNY

I my case I am working to lower my thyroid medication after cancer treatment, as my previous dose is now too much. I am still on Herceptin and Perjeta. Following cancer diagnosis I started to suspect that my own autoimmune disease was caused by breast cancer (as I wrote above breast cancer cell can produce modified TPO) , and the fact that I now need less medication appears to support this hypothesis. I am curious to see what is going to happen over long term.

BellasMomToo

28 years ago I was dx'd with hyperthyroidism and both Graves Disease and Hashimoto's disease. My thyroid was knocked out by radioactive iodine treatment (so I became hypo) and I've been on Synthroid ever since. My Synthroid dose has been consistent since my thyroid dx.

But since chemo, my TSH levels are higher than 'normal'. We waited to see if it would go back to normal but it hasn't. I'm 12 months PFC now so my PCP lowered my Synthroid dosage.

I'm wondering what my 'new normal' is. Or if I will go back to my 'old normal'

DATNY

Bellasmomtoo, why would you get a lower Synthroid dose with higher TSH? High TSH means that there is not enough T3/T4 hormone circulating, so the pituitary gland secrets more TSH to elevate the hormone levels.

BellasMomToo

DATNY: Oops -- I should have said my TSH was 'lower'. Thanks for pointing that out!