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Thyrants And Thyraves: With A Twist
This week’s Thyrants and Thyraves come with a twist. The twist is… Providing resources and lending support to our fellow community. As well as reading each other’s rants and raves, let’s share information with each other. If you read a patient’s post and you have a solution, post it in comments. As always, let’s do everything we can for each other, to support each other, and, and, and celebrate each other’s successes.
NHP: , feeling great Katie – Miss you!
MM: My energy. ..I Miss it 🙁 **sigh**
KH: Me too, Mandy!
KT: I had a really good day on Monday. I sent a postcard to my thyroid “Having a great time! GLAD YOU’RE NOT HERE!” Hmmph..my one day vacation ended Tuesday. Where does the energy go when it goes away? Or..where is it when it never arrives in the first place.. Fatigue, thou art mine enemy!
CBS: glandly morning right back at ya darling. I am thankful today that i can blame most anything (aging, my resistance to going to bed at a decent hour for my aging, my failing eyesight, my tired legs, my aching hands from gardening, my menopausal short-term memory issues not to mention that menopausal belly thing) all on my thyroid condition if I wanna!
SC: My baby girl is starting the DIET this weekend and it sucks!!!
NM: , The comment from people ” you have the good cancer”! WHAT???
BOJ: I’m so frustrated. I went to the endocrinologist for the first time today for my Hashimitos. He pretty much just told me to live with it until my blood levels were not in the “normal” range. He did do an adrenal gland test. I guess I’m just going to have to live with my symptoms for now…..Ugh!!
ST: Why is it the doctors act like we don’t know what we are talking about ,when we describe symptoms have never had before they upped the dosage of medicine????Wish there was a metor so we could adjust it ourselves!!!
EB: So true. I’m convinced that I would do best halfway between 88 and 100 mcg. I really think thyroid should come in 5 mcg increments, not 12/13 :~
JJ: yes! I am also frustrated with my doctor. She refuses to do add-back therapy because she thinks I’m responding really well to the Methimazole and only does it in extreme circumstances. But my TSH is 7! ughhhhh
KH: , i’m waiting for lab results. i’m so tired of being tired. and my brain is so screwy. i keep making mistakes at work, i’m going to get fired if i don’t stop screwing things up soon!
TRC: I am new to all this. What does getting your adrenal gland tested do to help & what are add back therapies? Sorry if I sound like an idiot. Trying so hard to learn
AAW: Ok, my first post here-my doc. wont prescribe thyroid if I test normal- but still dragging- any ideas? I feel so tired, yet the doc. doesn’t care.
AA: My new thydoc is an OD who has decided to focus on thyroid and related issues. In three months he has helped me more than all of the other physicians that I have had in 63 years. He listens to me and he talks to me (instead of at me). I get labs done the week before an office visit. During the office visit he hands me my copy of the lab results and we go over them one at a time. In terms of the thyroid tests, he always pays more attention to how I feel than to the numbers on the sheet of paper.
SM: Trying a new doctor today, wish me luck?
VHF: Funny thing…saw my endo today for blood work and check-up. He doesn’t like Armour, but, prescribes it for me anyway…which I thought was nice. He raised my dosage last time. I’ve since been put on Adderall for my ADD symptoms by another doc and I’ve lost 7lbs. He wants to “watch me closely” since he thinks the Armour is to blame. I tried to explain that Adderall can sometimes cause weight loss…..He didn’t know what that was. SERIOUSLY? He had to look it up on Wikipedia while I was in his office. Sigh………I hate doctors.
ML: My GP admits that I know more about Thyroid disease than she does, and know when I tell her my concerns, BUT still sticks to the UK NHS guidelines regarding testing and prescribing meds!!
H:, The good – 2today is a lovely day & I did well at life drawing. – The bad, lost a dear friend to cancer
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14 Responses to “Thyrants And Thyraves: With A Twist”
Leave a Reply to HD inOregon
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IGH! Just found out my DHEA levels were low but in “normal” range…. I don’t think anything is “normal” without my thyroid!! Anyway, the doctor will be back in on Tuesday, should I push for taking a supplement?? I don’t have my numbers, but I don’t want something else, going bad… I need my adrenals!!!
Tabitha, I absolutely hear you. Everyone’s normal is different. What was the recommended course of treatment? Or is s/he proposing none? Yes, you need your adrenals.
Can you tell me/us a bit more about your thyroid situation at present, a few more details? I/we want to make sure we get you the right resources and information before you see the doc on Tuesday.
Hang in.
xo
Let’s see… I had my thyroid removed 4 years ago due to an over sized goiter problem. I guess my thyroid was also not working properly! When they removed my thyroid they found a small amount of papillary cancer. They also removed my lymph node.
I went through 2 rounds of RAI and have been cancer free for 3 years =)
When I talked to the nurse yesterday, she said not to worry about it! (yeah, right!!) I guess she will be calling me next week to let me know what the doctor recommends.
So, wait, Tabitha, you aren’t on any kind of thyroid replacement medication? I’m going to see if a few of our thyroid cancer patients and survivors can join this conversation, and lend their thoughts.
PS: CONGRATULATIONS!
xo
Oh, I am sorry… Yes, I do take levoxyl(sp) 8-D Oh, they only removed 1 lymph node. I also take an over the counter B-complex vitamin and a Vitamin D/Calcium pills. I have severe food allergies too!! I guess they can be linked to my thyroid too!!
EB: Since levothyroxine has a half life of about 8 days, you can take alternating doses to reach the amount you need. My endo once had me on 150mcg for 3 days, and 125mcg for 4 days a week in order to get to the in-between dosage. – Might want to suggest that to your doc.
HD in Oreogn
HD – Thank you so much.
Tabitha, sorry, I thought you weren’t taking medication; that was how I understood your post.
xo
Tabitha, I think you should press your doctor on this issue. You are right–nothing about our bodies is “normal” once we have our thyroids removed. I always talk to my doctor about how I’m feeling and he does the best he can to help me. He wants me to be borderline hyper to suppress the activity of any thyroid tissue left in my body and isn’t willing to adjust my thymeds to be at a higher TSH. Does your doctor keep you at a low TSH, too? But because my doc won’t adjust my meds to reach the TSH level where I feel best, he does all he can to help alleviate other symptoms I may have. My doctor is great at listening to me instead of listening to the numbers. Make your doctor listen to you, too.
Congratulations on being cancer-free for three years! That’s fantastic!
xo,
Joanna
Tabitha,
Congratulations from me too on being cancer free for three years now! That is great!!!!
As to adjusting your thyroid replacement hormone (I take levothyroxine which is the generic version of your levoxyl), it is a real trial and error thing. My thyroid cancer was removed also 3 years ago, but my endo is still fiddling with the right amount of medication. My blood numbers are fine, but I do not feel OK. Many of us here on DearThyroid are reporting similar problems. – Personally I am look at possible other cause for my fatique. Had my adrenalin checked, had my iron (ferritin) checked, vitamins were ok, – now we are looking at sleep apnea.
I hope you can find your “balance” of medication!
All the best to you! – Hang in there, you’re not alone!!
HD in Oregon.
Hi Tabitha,
congrats from me too!! finding the right dose of meds seems to be proving so difficult for many of us.I just recently went to my doctor complaining of feeling exhausted all the time. She did listen to me and increased my meds. I like HD take alternating doses every other day, synthroid ond day and eltroxin the next.I must say I feel better on the days I take the higher dose, some of my friends with thyroid problems say I shouldn’t feel the difference that quickly, but I do.
HD I was just wondering if you had your Iron stores checked when you had your blood work done,? it is a completley different test than the iron level test.
And as for checking into sleep apnea please do!!
I recently sent my husband to a sleep clinic, I was convinced he had sleep apnea, but the results that came in were alarming. He didn’t have sleep apnea, but he did have a heart problem that had gone undetected by any doctor or phsical exam. The doctor told him that his condition sends to many shocks to the heart at he same time,and that he could have a massive heart attack if he didn’t get on medication straight away.
So please I urge everyone to get this test done I know this test has saved my husbands life.
Good luck with finding your “balance” of medication!!
and I’m with HD you are definitley not alone!!!
Thanks for all of the GREAT information. At my last check-up (2 wks ago) my tsh was .1!! It has been all over the place the past 4 years… as high as 100!! Currently, the Dr is wanting to keep me ‘hyperish’ to help with the weight loss. I have gained over 100lbs since my thyroid was removed. I am feeling good where I am now…because of my food allergies, I knew some of my vitamins might be off…
My main concern was still fatigue and hair loss. Don’t get me wrong, I do love the amount of energy I currently have, I am just not where I want to be!!
After a ton of blood work, I was told about my very low b-12 levels,as well as, calcium and vitamin D. I was just thrown for a loop when I was told yesterday about some other tests that came back low.
The nurse told me that my DHEA was very low and that I would hear back from the doctor on Tuesday. I have done my homework over the Internet and know how important this is… My question is how to I approach the Dr on the matter??
Thyroid Newsroom
From Mary Shomon Your Thyroid Guide
——————————————————————————–
Do You Need B-12?
by Mary J. Shomon
October, 2002 — A study that came out of Tufts University last year found that as many as 40 percent of healthy men and women have low levels of B-12 — and those levels were deficient even though the people were eating diets tht has amuch as three times the recommended daily intake of this critical vitamin.
Vitamin B-12, which is also known as cyanocobalamine or cobalmin, is an essential nutrient in our diet. It is required for development of red blood cells, and is used to make the protective coating surrounding nerves.
Vitamin B-12 is found mainly in animal foods such as meat, poultry, milk products, eggs, and fish.
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The study was led by Katherine Tucker, PhD a nutritional epidemiologist at the Jean Mayer U.S. Department of Agriculture Human Nutrition Research Center at Tufts University in Boston. They evaluated B-12 blood levels in 3,000 adults.
What they found was that low B-12 levels were fairly common in the entire population, but of all those texted, 39 percent had levels that were on the border or slightly below the cutoff, 17 percent had demonstrably low levels, and 9 percent had levels so low that they are considered clinically deficient.
According to Dr. Tucker, “I think there’s a lot of undetected vitamin B12 deficiency out there.”
B-12 deficiency can cause a type of anemia that is characterized by fewer but larger red blood cells. Other effects include walking and balance disturbances, a loss of vibration sensation, confusion, and, in seriously advanced cases, dementia. Since the body requires B12 to an inadequate supply of B12 can expose nerves to damage.
Symptoms of B-12 deficiency and B-12-related anemia include:
•Feeling tired or weak
•Pale appearance to the lining of lower eyelids
•Palpitations, fast or irregular heart beat.
•Faintness and breathlessness.
•Hair loss
•Bruising that occurs without reason
•Dizziness
•Long or unusually heavy menstrual periods
The researchers were particularly suprised by the fact that among those studied, the youngest -the 26 to 49 year olds-had similar B12 status to the group aged 65 and up. Says Dr. Tucker, “We thought that low concentrations of B12 would increase with age. But we saw a high prevalence of low B12 even among the youngest group.”
The deficiencies in B-12 did not correlate with meat, poulty and fish in the diet, even those these foods are the typical source of B-12. According to Dr. Tucker, “It’s not because people aren’t eating enough meat,” Tucker says. “The vitamin isn’t getting absorbed.”
Although many people can make up the deficiency by eating cereals or dairy products fortified with B-12, others had to take vitamin supplements to bring their levels up to normal.
Most people, and particularly those with autoimmune diseases, should be tested for a B-12 deficiency, and for anemia. Once diagnosed, in addition to your doctor’s recommendations regarding treatment for anemia and any suggested iron supplementation, you can also consider the following recommendations:
•Eat more foods that are good sources of iron. Concentrate on green, leafy vegetables, lean, red meat, beef liver, poultry, fish, wheat germ, oysters, dried fruit and iron-fortified cereals.
•Help your body absorb iron better by eating foods high in vitamin C.
•Red meat can supply iron, but also helps your body absorb iron from other foods.
•Limit your use of tea, except herbal teas. The tannins in tea can inhibit iron absorption.
•Avoid antacids, phosphates (found in soda, beer, ice cream, candy bars, etc.) and the food additive EDTA. These block iron absorption.
I copied and pasted this Tabatha from Mary Shoman,her book is amazing. As for how you approach your doctor, # 1 your doc did the tests, so he sounds like he is on the ball.
#2 be honest, tell him you are doing as much research as you can via reading/ support groups because you want to be as educated as you can on your condition, The only time the doc’s get bent out of shape is when they think you are telling them how to do their job, (that’s another story they have lots to learn from us’ but we can’t let them think that when we talk to them) Hope this helps, it may certainly explain your fatigue and hairloss!! good luck Tabitha. (keeping tabs on you!! lol)
Everyone, thank you SOOOO MUCH FOR YOUR INCREDIBLE SUPPORT, RESOURCES AND INFORMATION. YOU’RE WONDERFUL.
XO
Tabitha, in my experience it’s best to be as straightforward with the doctor as possible. I don’t know how your doctor-patient relationship is, but I recommend telling your doctor you were told your DHEA levels are low. Tell him you’ve done some research on the internet and based on that research you feel like your symptoms indicate you may need a supplement. Tell him you’re not comfortable with the level of your DHEA and would like to try something to boost the levels.
That’s just a suggestion. Again, I am always super straightforward with my doctor. He knows I research everything so he now expects me to ask a million questions at every appointment. Don’t be shy! Take care of yourself! Let us know how things go with your doctor!
xo,
Joanna