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Thyme For Literary Healing: Sometimes I Feel Like I’m A Dial-A-Disease-Wheel, And…
Many of us with autoimmune thyroid disorders and thyroid cancers seem to acquire other conditions of an autoimmune nature; or just other diseases. What fun. How do we feel about managing those diseases? How do they affect our sense of self? How many diseases are you managing? Do you know where your disease ends and you begin? Do you feel your disease(s) redefined you? Or, are you defined by you?
Please share your feelings regarding this and more…
Ready? Set. Write!
Tags: autoimmune thyroid disorders, CPAP, Dear Thyroid Community, graves' disease, gynecology and thyroid disorders, Hashimotos, health support, hyperthyroid patients writing, hypothyroid literature, managing multiple chronic conditions, PCOS, sleep apnea, thyroid cancers and autoimmune diseases, thyroid support
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11 Responses to “Thyme For Literary Healing: Sometimes I Feel Like I’m A Dial-A-Disease-Wheel, And…”
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Sometimes our road to wellness becomes a jigsaw puzzle. You really have to be a detective. Personally, I have found that thyroid disease rarely comes alone. In fact, it loves to invite its buddies around for a frat party throughout your body. High blood sugars – welcome in! So happy to see you! High thrombocytes/uric acid – long time no see! PCOS – good to know I’m not the only hormone that’s out of whack. I was feeling like I needed some company.
Basically, we started out with a lot of things wrong with us, which – our doctor explained – have been caused by our thyroid. Since then, my Epstein-Barr virus has been deactivated by several months of antivirals, my thrombocytes and blood sugars have returned to normal thanks to Aspirin and Metformin and my PCOS looks like it is going into remission too. The lesson I have learned from this: it’s vital for your doctor to do the right tests. It may be too late to cure our thyroid disease, but there are associated conditions that may be borderline (e.g. prediabetes is a very common one), which it is still possible to prevent with the right meds and right lifestyle/lifestyle changes as appropriate. During the course of my treatment, I have also had to tackle other conditions (such as the beginning of the calcification of an artery in my neck), but most of these are going away/have gone away.
If we are still struggling with symptoms, e.g. unable to lose weight, it is vital to consider all avenues and not just point the finger at your thyroid, although it may well be the culprit for any associated conditions. In my experience, I strongly believe that it is very important for a good thyroid doctor to treat the whole body and to be very aware of what an out of whack thyroid may cause and test for it accordingly.
In continuation of what I just posted … I have learned so much from our proactive doctor and my great gyno. It sucks to be on some of these meds to prevent the progression of certain associated conditions, but as far as I’m concerned a few months to a year of suffering because of meds is worth it in order to avoid a lifetime of further … See morecomplications. Thyroid disease has made me even more determined to treat my body well, eat healthily and work out. It seemed futile pre-disease as I wasn’t getting the results I so desperatedly wished for, but now I feel as if it is vital. Even sport, for instance, can help to get your hormones in balance and, in fact, when I have the energy I really enjoy a good workout. I’ve never been a sporty person, but working out with my trainer turns it into a lot more fun and I especially love it when we do kick boxing – basically she holds the glove and I have to kick it 30 times with each foot – sounds easy, but it’s pretty exhausting.
Another thyroid patient just wrote me and asked me some questions about the calcification in my neck, which has luckily meanwhile gone away. She also asked me about the antivirals I was taking for my Epstein-Barr, which ultimately helped get rid of it. I’d like to share this information with you as I think it is important. I apologise for commenting for the third time in a row!
Our doctor works together with several specialists and so he sent me to be tested by his venerologist/phlebologist who can check that all your arteries are OK. In my case, it was just the beginnings of what could have been a potential problem, which the docs said was caused by my hypothyroidism. However, after a few months of taking the meds, my neck was back to normal, so just taking the right thyroid hormones alone can have a lot of positive effects – not just on the thyroid.
In terms of the Epstein-Barr, I was very happy to have access the antivirals. I was taking a product called Isoprinosine, with the active ingredient inosine pranobex. It’s an antiviral specifically designed to treat EBV and other herpes viruses. It’s quite common for thyroid patients to have such viruses as we have a weakened immune system, which is usually boosted again by taking the right thyroid hormones. Inosine pranobex is also available under other names such as Immunovir and Delimmun. It wasn’t cheap, but it was worth it. At one point, I was taking a total of eight pills 4x a day.
Sarah, thanks for your informative & detailed posts!!! I too have Eppstein Barr, both acute & chronic, & PCOS with my Hashi’s. I am learning as much as I can as fast as I can, only dXed 2 wks. ago. I didn’t know there was an Eppstein Barr treatment & didn’t know PCOS can go into remission. Do you have weight issues? If yes, is it easier to lose weight now?
Wow this brought back some old high school memories. In a science class I took we did a project about some differant dieases and conditions. We had to put a mark by things we had either currently or in the past or that a close relative had currently or in the past. We then went over the results everyone had. The teacher went down the list and had us raise our hand if we had put a mark by it. I raised my hand for just about everything on the long list and it was mostly due to me having the things. It was pretty horrible since the teacher made jokes every time i did or didnt raise my hand to. The teaher was one of my favs tho don”t get me wrong. He was more like trying to lighten the mood nad make it more fun. It was a very intersting project though. I felt like the sickest person in school tho and maybe I was. No one else in school had to have entire class rooms moved to accomidate them and their hearing diasbility lol. No matter, I felt like a wheel of dieases thats for sure lol
I do feel like everything wrong with me has redifined who I am. Not all negatively though. Im a better person from all I ve been through in my life. I take nothing for granted. I”ve come close to dying a few times sadly. It realy makes you see life differaently. What doens”t kill you make you stronger right? So while others my age are still living at home with parents and spending all their money if they even have jobs on clothes, video games, and partying well my husband and I are r setling down and becoming home owners this week actually were building are future thogether.
Im not sure how many dieases Im managing. Currently switching doctors and going to see specialist next month. Can”t wait to finnially get some more answers and things managaged.
No problem, Dawn. From what I read and from what my doctors told me, PCOS can go into remission. My thyroid doc says that it is in fact caused by my Hashimoto’s. If you want to read more, I wrote a column on this a few months back: http://dearthyroid.org/flying-with-broken-wings-help-i%E2%80%99m-turning-into-a-man/ This and the comments that go with it should teach you a lot about PCOS and the connection with thyroid disease of which many doctors seem to be unaware.
Sadly, the Epstein-Barr antiviral seems to be something that many doctors are also unaware of and it is only partially available in the US although apparently it is available in France without a prescription as an OTC drug. I have read about other treatments too, but not so much about antivirals. My doc deals with EBV a lot as we thyroid patients are more susceptible to it with our weakened immune systems and it is also cited as the trigger for illnesses such as thyroid disease and chronic fatigue syndrome (CFS) or myalgic encephalitis as it is also known.
As for weight issues, I don’t actually think I have any more weight issues than any other thyroid patient. It’s not exactly easy to lose weight, but I have lost quite a bit and I’m no longer as obsessed with it as I once was because I am more obsessed with being healthy and getting my hormones and other levels balanced. Considering I have probably had thyroid disease for 10 – 15 years, the biggest I ever got was a Size 14 and now I’m down to a Size 12, so I actually consider myself pretty lucky because all the odds were stacked against me in terms of weight gain. I have however been taking an antiandrogen birth control pill since my diagnosis, so that has possibly helped avoid some of the typical symptoms such as hirsutism, polycystic ovaries, acne, etc. However, it was only once I found my current gyno and started reading more that I realised the connection between high blood sugars and PCOS and also that Metformin is generally used as a treatment and the BC pill alone is considered insufficient. It’s important to have a glucose tolerance test, which measures your blood sugars at several intervals after consuming a glucose solution – normally, your sugar should peak and then go back down at a certain rate. If your sugars don’t go back down or they go back down too slowly, you may suffer from diabetes or prediabetes/impaired glucose tolerance. It is however also possible to get this under control with meds such as Metformin and dietary changes/exercise. Avoiding high-glycemic foods is also said to help, but I mention all this and more in my article, so feel free to give it a read.
If you have any more questions, please don’t hesitate to ask me. I know how daunting it can be when you are first diagnosed with yet another condition.
PS: Dawn, I forgot to mention that Metformin actually helps a lot of PCOS patients with weight loss and the added bonus is that it can also fix related metabolic issues such as high triglycerides/cholesterol.
Hi, all! first, let me say thank you to everyone for all thast you do here.I have been diagnosed with hypothyroidism for about fifteen years.In the last seven years, i have also developed fibromyalgia and trigeminal neuralgia.i was actually diagnosed with thyroid disease quite accidentally,while having routine bloodwork done.the medication, synthroid, actually seemed to be a miracle in the first few weeks, then, it seemed like,despite the blood test results each year saying i am in the right”zone”,i am exhausted, can’t lose weight no matter how hard i try,have my bouts with depression…who am i to question the prfessionals, but sometimes it makes me wonder..am i crazy?now,with all the other issues i have,i can’t tell where one begins and where one ends..and i wonder if this is as good as i will ever feel.Don’t get me wrong..i don’t lie there and take it..i fight every step of the way and push myself in all i do, because i refuse to let any illness rob me of who i am on the inside.and sarah,i agree, a good workout does wonders..and it helps to have people around you who understand.
I am dealing with several illnesses but each time I think we have found the last piece to the puzzle, yet another underlying issues comes to the surface, but I do look at this as a good thing. I don’t like not knowing what’s going on or not having answers.
I also thought I had a good handle on things and had all the dots connected as to what caused what, but it’s not turning out to be as easy as it appeared for a time.
I have been diagnosed with Hashimoto’s, sleep apnea, CMP, fibromyalgia/CFS, vitmain D deficiency likely since childhood thought to have resulted in joint ligament laxity, degenerative arthritis/scoliosis/stenosis/spondylosis, polyneuropathy, RSD, myxedema, chronic dry eyes, and now what appears to be reactive hypoglycemia and question of an insulinoma (pancreatic tumor usually benign).
My diseases are definitely redefining/changing me. I am a “work in progress” getting ME back and seeing how that works with the NEW ME that is slowly evolving. Some of these diagnoses are improved, some even as much as 80%, so I have come a long way, but still feel like I have a long, road ahead. Nerve pain, although improved 50+%(YAY), and sleepiness/stamina, are still major issues. Even the brain fog and memory have improved but still waxes and wanes. Some days it kicks my ass and I’m just too exhausted and have to go with it and rest, but most days I am in charge and and feel like I’m moving forward and continuing to improve. I’m going through a rough patch at the moment and it gets me down some days but after everything I’ve been through, I believe this too shall pass. I’ve always been a very flexible, adaptable, stubborn and strong person. The saying, “what doesn’t kill you makes you stronger”, is so true. I’ve worked and fought hard to get this far and I feel stronger than ever and very proud of what I have accomplished. I have to say though, I could’t do it without the support of this amazing thymmunity!!!
Bioidentical Hormone Treatments ANYONE???
Thanks Sarah again for all the great info. I love ALL your informative, insightful & entertaining articles!!!
I’m wondering if anyone else is getting treated for PCOS with bioidentical hormones? My dr. seems to feel that balancing out my hormones, (thyroid & sex) is the best 1st plan of attack for my PCOS. I was low in progesterone & estrogen. I’m using estrogen cream & progesterone cream & capsules. I’m also getting IV Venofer for my anemia, taking Armour, Spironolact (for the fluid retention), low dose Naltrexone (for inflammation), Propecia (for hair loss), Vit B injections, Vit D gelcaps(prescription, started with injections), magnesium, Ferro Sequels iron tabs, & Vit C. I take melatonin along with my magnesium caps to sleep better. It’s killing me financially but I’m feeling MUCH BETTER!!!
Hey Dawn,
Thanks for sharing your treatment routine. It really sounds like you are on the track and that makes me very happy for you! Thanks also for hte kind comment on my articles. So glad you enjoy them and so glad I was able to help with my info on PCOS, etc. Again, don’t hesitate to contact me if you have any more questions at all!
Love,
Sarah