Once again, to save stress of to long a thread on the board, I am opening week 3 of MG's school for thyroids! Just joking about this being a school for thyroids for first time readers. I am using this thread as a running thread where we can state whatever is bothering us in our day to day lives and affecting our care. Be it thyroid MDums or lack of family understanding. Posting here will share with all that read this post and certainly get my attention.
I feel it is important to include around the world because there are so MANY of us ALL over the world suffering from thyroid disease and through this wonderful board we can help each other and those around us. It is also nice to know more than your MDs for a change. Hopefully through this continued weekly thread we will be able to learn and teach others what they need to know to see that they get optimal care in their own health system.
Look to the previous weeks post:
[url]http://www.healthboards.com/boards/showthread.php?t=597479[/url]
It is full of a summary of thyroid basics:
How to calculate what your hormone percentages.
TSH suppression by T3 and other meds
Hashimoto's quirks and why antibody testing is important
TPOAb function and effects blurb
TSI function and effects blurb
and much, much more... (links to other posts about pregnancy and thyroid AIs, adrenal gland health.. etc)
Our endocrine systems are delicate and only function well when you are at a state of equilibrium with your self. If you have one thing fail it is hard.. when that failure is left untreated it will ravage your whole system. Please read this thread and those linked to it to gain as thorough an understanding of you and your condition as possible.
If you do not have a thyroid condition, but a family member does.. PLEASE ask questions and read our woes and triumphs. It will be harder for one of us that is struggling to get even an educated MD to listen, if the family is not behind us. Share things that you do to help out your thyroid dysfunctional family members. How do you view life with us and what can we do to make it easier. Most of us just give up, shut up, and cry in the shower to spare you all.. WELL that is my tactic when I am blue. Then I go clean the martial arts mats with whoever wants to play, I promise I do not to break my partners only those that know how to fall.. are made to fall.
Think about it a little, there are so many facets to care in the case of any disease. You have to heal and nurture body, mind, and soul. You also have to nurture your family ties and grow stronger from this RAW deal. We can not wave a wand and make it disappear, but through team work and understanding we can distribute the burden and make everyones woes lighter.
WOW! Sorry all I have rambling finger trots. Do not be discouraged from my.. how did another poster put it.. Yeah, articles. I just try to be thorough, because if you can research and provide irrefutable proof that MDs and Ph.Ds have researched and proven x,y, and z. MDums may begin to believe and support their patients better. If not, ditch them and begin MD shopping!
Sincerely,
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Thyroid care concerns around the world by MG ;)- week 3
I'm not the only one who cries in the shower?! Does anyone else have the guilt of not being fully "there" for their family? Does your spouse think you are lazy? yesterday evening at 4:30 my husband asked if I wanted to start painting the bathroom . I'm ready for bed at 3:00! I certainly don't want him to think I use this as an EXCUSE. I'm really just so darn tired.
Re: Thyroid care concerns around the world by MG ;)- week 3
Hello fellow thyroiders'! I know how you feel Les. There are so many things I want to do but never know what I'll feel like? It's so hard to make plans. Just dreading an upcoming long road trip, short wk end, but me doing it alone and knowing how that drive does me in, but its the only way I get to see my limited family. This flucuating from anxiety to depression is getting old! The "poop" issues are kicking right now to boot. Was hoping after getting "diagnosed" everything would finally be fixed! not so. I wish we all could find that happy medium between the fluxes?
__________________
Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy
Re: Thyroid care concerns around the world - week 3
Well I have been researching.. Yeah some surprise.
Well my primary adrenal insuficiency and Hashimoto's classify me as Schmidt's Syndrome aka Autoimmune Polyendrocrine Syndrome Type II. I am actually getting the giggles over it. Maybe my meds are off. But it makes so much sense, since I am a walking breathing contradiction. Talk about ones body being a room and someone tossing the preverbial antibody excrement into the fan to see where it landed. Oh well, more to learn and have fun with. Ugh!
HypoT poop sucks.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Thyroid care concerns around the world - week 3
Hi MG, Les & Kindspirit i understand where your coming from with feeling tired i have had swings from being literally imobalized tohaveing energy then energy in the morning and tired out in the afternoon and quite hopeless and i do agree we feel a certain amount of guilt towards our familys but i do have to remind myself now that i matter too and need time for me to be able to look after them but i must admit i had a cry today to my husband, i said why do i have to suffer with this it makes me feel useless at times i suppose when i know more of whats going on with my body i will come to an understanding with it all and it wont seem so bad but in the meen time i'm going to keep laughing at simply anythink i can even if i do look like an headcase lol! keep your chin up all and sleep when you need love kassi
Re: Thyroid care concerns around the world - week 3
So frustrating trying to "explain" ourselves to others. I declined a meeting tomorrow with a church group. I don't really like the discussion part and lately I just refuse to do things that stress me any further. Anyway, the "head" of the group emailed me asking about my "condition". Saying, when will I ever have a social life, why can't they give me a correct pill", like I'm ignoring people cause I like it? I emailed back with a tiny bit of info and sd soon I will have a life again. I guess all we can do is take a deep breath, and do the things that make us feel a bit better, avoid the irritants as much as possible? How do you all handle uninformed people? I just want to scream and run away! am I too old to run away? nah, never too old!!!
__________________
Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy
Re: Thyroid care concerns around the world - week 3
MKG-I have a question for you about hashi's and cognitive impairment. I have read studies that when testing people who are hypothyroid cognitive functioning is diminished.I have read a study that said treatment improved cognitive function, and another study that said treatment did not improve cognitive function. I am wondering if you know why cognitive functioning is impaired???I am thinking that it may have to do with decreased blood flow to the brain. Do you know if this is so? Often people with hypo have lowered body temps which may be indicative of lower oxygen to the brain--do you think that may be the connection?
I know that if I exercise that I feel better , clearer in my head. Therefore, I am thinking one way to help with this cognitive impairment is to be sure to get aerobic exercise-get the blood flowing.
What are your thoughts on this topic-specifically
why would cognitive functioning be impaired with hypo-is it bloodflow?
what can we do about it besides treatment?
I have been wanting to ask my endo this question, but we have been caught up in trying to stabilize levels and nodules and lymph glands. But, I really would like to know the straight story on this topic. I wish the doctor's had more time to educate us about our conditions !
Last edited by osteoblast; 04-28-2008 at 01:39 PM.
Re: Thyroid care concerns around the world - week 3
Well there are two things that can cause mental impairment:
Hashimoto's encephalopathy: This is where your antibodies attack the brain milan and literally cause degradation of mental pathways. Determining you have it is a pain. Lumbar puncture and lots of neurological tests ruling out all other sources of mental deteriation.. etc. There was a recent study that one women who was determined to have HE and treated successfully didn't regain her mental function until after a total thyroidectomy. Just one more reason why I am going to push for a TT.
Hashimoto's Encephalopathy is documented to be underdiagnosed, in many cases it is passed off as early maternal dementia in conjunction with hypothroidism.. or many other neurological disorders, such as stroke, Alzheimers, psychosis, Wilson's Disease, Pick's Disease, brain cancer, primary progressive aphasia. So given our knowledge of how hard it is to get just hypothyroidism imagine getting an MD to not blow you off until you couldn't fight for yourself. I started my road to diagnosing me for HE back in July.. I am still working toward it near a year later. You can treat it, but currently it is believed to not be curable. Long term prognosis for those caught early on in the disease is good with proper treatment. It is also a relapsing condition, and a steroid responsive disorder, treatable with oral corticosteroids (Prednisone or its derivatives.)
So what are the symptoms? Hashimoto's Encephalopathy typically accompanies high antithyroid antibody titers >1000. If you are not consider to have Hashimoto's Thyroiditis at the time of detection you will eventually be diagnosed with Hashimoto's Thyroiditis as well. Just takes time to find the right MD. *snort* As with any disorder you may have one or more of the symptoms initially, and the farther into a disease the more symptoms and higher degree to the symptoms. So look at these:
* Confusion
* Disorientation
* Psychosis
* Coma
* Tremors
* Convulsions
* Concentration Problems
* Attention Span Problems
* Difficulty Retaining Information
* Short Term Memory Problems
* Seizure Activity
* Monoclonal Jerks - Involuntary Muscle Jerks
* Dementia
* Fatigue
* Coordination Difficulties
* Headaches
* Episodes of Stroke
* Episodes of Stroke-Like Deterioration
* Right Sided Hemiparesis - Right Sided Partial Paralysis
* Aphasia - Speech Difficulties
* Articulation Difficulties
* Word Finding Difficulties
* Fine Motor Movement Problems - Coordination of arms, hands, fingers.
Fun huh? Here is the article on a cure:
Thyrotoxic autoimmune encephalopathy in a female patient: Only partial response to typical immunosuppressant treatment and remission after thyroidectomy .
Clinical Neurology and Neurosurgery , Volume 109 , Issue 5 , Pages 458 - 462
N . Yuceyar , M . Karadeniz , M . Erdogan , A . Copur , A . Akgun , E . Kumral , G . Ozgen
Now after scaring you with the nastiness of Hashimoto's Encephalopathy and what I have gone through.
How can just plain hypothyroidism cause cognitive impairment?
Here is a good article if you can get it..
Is cognitive impairment related to hypothyroidism improved by hormone-replacement therapy?
Authors: Capet C.; Jego A.; Denis P.; Noel D.; Clerc I.; Cornier A.C.; Lefebvre H.; Levesque H.; Chassagne P.; Bercoff E.; Doucet J.
Source: La Revue de Medecine Interne, Volume 21, Number 8, August 2000 , pp. 672-678(7)
In a fetus low T4 in the first twelve weeks is known to increase the chance of neurological cretinism. Something similar is suspect to occur in women with too low T4 concentrations. T4 directly is important in neurological function and communication. As a result.. if your levels are off this can cause you issues as well.
As to why exercise can increase your alertness and such. Exercise produces natural endorphins and such that make you more alert and on guard it goes back to the predator prey .. fight or flight instinct we all have. In mild hypoT.. or suboptimal T4 patients.. this may be enough to correct things or mask issues. Done for now. This meet your expectations. Must cook dinner, my son is making protests!
This of course is my non-MD hypothesis and researched opinion on the matter.. I forget to leave that out.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Thyroid care concerns around the world - week 3
MKG- I am going to look at the article . Thank you!
I asked the endo about HE and she said no she didn't think so. Right now I am thinking the usual hashi's brain trouble. That really is all I can deal with right at this time. Well, let's say it's just hypo due to hashi's-do you think that our lower body temp does in fact reduce blood flow to the brain?? And if it is a blood flow issue what can we do ?
Surely, there must be methods to increase blood flow to the brain.
Last edited by osteoblast; 04-28-2008 at 02:18 PM.
Re: Thyroid care concerns around the world - week 3
My Endo told me no way as well. Then I got the second round of antibody blood work near 200o and my neurologist saw the signs. My blood work and spinal fluid are telling the tale. My Endo was insufficient to rule it out. You need a neurologist if you want to rule it out completely.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Thyroid care concerns around the world - week 3
MKG-I just looked up cerebral blood flow and hypothyroid and voila!!!Though I am not happy about it. It is a blood flow situation and it is not remedied with thyroid treatment. Though cognitive test scores were not significantly difft. between controls and hypo group----the brain scans showed significantly less blood flow to certain parts of the brain. And, as I said it was not improved with thyroid treatment. So, how do we get the blood flow increased-It must be exercise!
Please let me know your thoughts on how to increase blood flow.
Yes, my TPO AB have been over 2,000 through recently 1300, will have new numbers shortly. If I see any of the signs you have indicated, I will pursue HE further.
The increase of brain blood flow is what I am going to be looking into now.
Re: Thyroid care concerns around the world - week 3
Mg, I think you had high antibodies like mine? 1300 were mine. Do they go down with treatment? Also my wbc keeps going lower on each cbc. The last one was 4.7,(4.8-10.8) could the autoimmune be causing that? I've noticed on previous labs over the yrs the wbc keeps decreasing, was in the 7's then 6's now 4's. Also, wondering about the Gran% that is low too, 40. ( 50-70) Lymph% 42 high (20-40). Since my thyroid is "destroyed" "non-existant" will meds be easier to treat in time, like its not even there????? or do those little antibodies still like feeding on dead meat?
__________________
Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy
Re: Thyroid care concerns around the world - week 3
My antibodies were 1700 and 300 for TPOAb and TGAb respectively. My TSI were 110 as well.
If you look on the week 2 thread there is one known way to reduce the antibodies.. and that is to make sure you have sufficient selenium in your body. 200 mcgs is the recommended dose from literature. However, too much selenium is toxic to your body... so it is recommended that you test your Selenium levels before starting a selenium regime. The test is a urine test.
As long as you have thyoid tissue to attack the antibodies will stay active. One of the more recent study hot spots is using TT to treat hashimoto's. I need to check the university hospital's near me and see if they need a human guinea pig. Sign me up! Studies are showing that removal of the thyroid does improve Hashimoto's treatment.. especialling in patients with additional issues.
If your thyroid is completely dead and not producing any hormones, in theory you should be easier to treat and the antibodies should not have anything to attack. BUT the thyroid has been known to have the ability regrow tissue and as a result there can be new fodder being generated continuously. But we all have our quirks so.. it is not something that I can guarantee. And no one can claim the endocrine system is as simple as the common cold.
As to circulation impairment and cognitive effects. Yes, low blood pressure and poor circulation can cause issue with cognitive impairment as well. Normally the resulting impairment is due to low O2 saturation or lack there of in the neurological tissue. Improving circulation and O2 saturation through exercise and cardiological stimuli is one known treatment. Another issue you should test for is hypopnea.. chronic shallow breathing in your sleep and during daily function. Testing your breath peak flow and consulting with a sleep specialist if you have sleep issues is always a good thing.
Note: shortness of breathe and low BP are hypothyroidism bonuses.
Hypothyroidism effects all your metabolic processes and if you are not optimal symptoms cognitive and others will persist. At least my brain is coming back on line. But my memory is still spotty. Humm I am forgetting something.. Oh yeah. Gotta vacuum while the hubby is off the couch. I will be back!
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Thyroid care concerns around the world - week 3
Hi MG i am reading your posts and trying to take things in, i find myself at times haveing to print some off that i think will challenge my GP and help me, you made me laugh when you said you remembered to hover the sofa while your hubby got off it, i find myself doing those things too, i usually think of it and then do somethink eles and then remember what i was going to do about an hour to late, then i cant get to do what i should have done because everybodys in my way i dont think my thyroids makeing my hair fall out i think im pulling it out lol! have a good day all if poss. love kassikoo
Re: Thyroid care concerns around the world - week 3
Kass,
Have you been following your vit D, B12, and ferritin? IF you are low in these they can cause the hair to fall out as well. Getting these levels up is always a chore.
I got the vacuuming and allergen washing of the surfaces done yesterday. Now I just need to dust, sort the clutter, and scrub the tile surfaces. We had the dogs in for a while and I do not know if I will ever get all the hair off of everything. *Sigh!* I am glad that graduate school is part-time.. because being a mom, maid, cook, and thyroid victim is definitely time and a half.
I am off!
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Thyroid care concerns around the world - week 3
MG-I have a question that I am not sure how to even begin to research or even to formulate to ask you. For starters, I know that hashimoto's is far more prevalent with women. But, my question concerns whether a mother or father is more likely to pass this disease on to their children. For example, in the instance where the father has TPO antibodies and hypothyroid, mother does not, would the children esp. daughters be as likely to get hashimoto's as in the case where the mother would be the carrier?Of course it is a genetics question, and I am thinking that it would be an even risk-either from a mother or father, but perhaps there is some linkage with being male/female dominant in the passing of the disease as there is with the prevalence, or not?I hope that you can get the gist of my question!
Oh, and about crying in the shower. Hashimoto's can really do a trip on your mental and emotional well being. I think it is esp. important for those of us with hashimoto's and of course any other AI disease/s to really take care of our health! We cannot afford to be as sloppy with our health as other people-there just doesn't seem to be any leeway. The path is hard enough! What I mean by this is that while others may be able to tolerate poor food choices , lack of exercise, and alcohol, I think we just better not go in that direction. Our systems seem to need steady, healthful choices and certainly a sense of calm and well being(despite our probs) should be the way to go.Anything that supports our healthy mind, body , spirit we should move towards.
Re: Thyroid care concerns around the world - week 3
You are looking at probabilities, and a split genetic dominance issue. Basically there is a 80% chance if on parent has one defective X that the girl will get it. Guaranteed if the father is the carrier, 50% chance if the mother is recessive dominant and father is clean. So probabilities give you 80%. Now with boys if only the father has it.. they are safe, if the mother is recessive dominant (one bad X, one clean X) Then you are at a 50% chance they will get it.. but statistical manipulation makes it closer to 40.. I really don't want to go all they way doen that road.
Basics as I believe every one knows: Females are XX and males are XY. Since Hashimoto's is known to be 8:1 dominant in females, the chromosomal link is justly assumed to be on the X. Thus it comes down to recessive dominant versus dominant passage. Let us call the dominant Hashimoto's chromosome Xh, and X Hashimoto's defect free.
In female children only a mother that is dominant in Hashimoto's XhXh will stand a greater chance of passing on Hashimoto's than a male with Hashimoto's XhY. Male children will not get the Hashimoto's defect from their father.. only their mother. While female children have three sources. Two from the mother and one from the father. So probabilities are higher that a female will have an X dominant disorder. Was that what you were after? All I can say is if I have another child I want it to be a boy just as badly.. and I hope my son only has boys. Maybe then we can breed it out. Is that a bad wish? I don't think so.. I see it as wish future generations a better chance at not suffering with this.
My son is soooo screwed. I finally got back the last of my information search on his siblings father and mother and their siblings and siblings children. My dad's parents were both from families with 12 and 13 children. *Images of bunnies running about in the countryside dance briefly through my head every time I type/think about that* My dad's side is showing up Two aunts and 2 female cousins.. the rest were all boys. Diabetes, Hashimoto's, goiters and TT's all the way around. The boys had no issues. So the polyendocrine issue may have come from my dad.. my mom's side is just documented thyroid AI's. *snort* Maybe my son won't get the polyendocrine syndrome defect. If he does I will have a step by step how to treat X and what to look for guide for him and his kids.
As to living, we have to keep this tight walk the line and do the best we can with diet, exercise, and lifestyle. It is a literal war against our own metabolism. Even if we look like pudge monsters, we can still pass on good work ethics and attitudes to our children. I believe that all this has really improved my personality.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Thyroid care concerns around the world - week 3
MG-Yes. you intellligently answered a question that I had difficulty expressing.Thank you. It is very complicated, to say the least! You really do know your stuff. Let me ask a hypothetical that you covered but I am having trouble with the technical language in your response. Say the father carries the gene for hashimoto's , the mother does not. What would you say about their offspring and hashimoto's?? Daughters-likelihood and Sons likelihood of having hashi's?I know you covered this but please tell me one more time in as simple , plain English as you can.If you would handle it from the other way-mom has it , dad doesn't that would be great. Again, I know you answered it , I just can't get it the way it was stated. Thank you!
It sounds like you have alot of stuff going on in your family too. It is a wonder that hashi's is as prevalent as it is. You would really think that hashi's people would have not made it through the evolutionary trial and error process. Of course with life spans being shorter , hashi's may not have had time to do its business on a person. That is the only thing that I can think.
I can understand your wanting sons BUT what I am now wondering is whether it is possible that although the males do no get hashi's as much as females maybe they get another AI. And, we know AI disorders like to travel together.
Yes, we must walk the line and maintain a perspective on this. Sounds like you have a very good attitude and most likely your son is will inherit that!
Re: Thyroid care concerns around the world - week 3
Summary Hashi's Father and normal Mother:
Because the son will only get the Y from the father and not the contaminated Xh his chance is 0.
Because the daughter has to get the contaminated Xh from the father, she will have it and be at a 80% chance of activating.
Hashi's Mother and Normal father:
Assuming Xh X and X Y:
Xh X or X X for a daughter or Xh Y or X Y for a son so the chance should be 50:50.
Assuming Xh Xh and X Y:
No matter how you mix it.. you are going to have Hashimoto's.. boy or girl.
Well as to other AIs.. it comes back to hereditary predisposition in the genetics. My son currently is allergy free, but has sleep apnea, and IgA deficiency. Where this goes? I do not know. When you have an AI in the family there is often others as well. Allergies are considered AIs. The males in my family are amazingly healthy. High cholesterol, hay fever, and heart issues late in life are their nemesis.. unless they smoke and drink... then add lung cancer and liver issues. I am hoping my son hold true to form.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Thyroid care concerns around the world - week 3 
I am actually getting the giggles over it. Maybe my meds are off. But it makes so much sense, since I am a walking breathing contradiction. Talk about ones body being a room and someone tossing the preverbial antibody excrement into the fan to see where it landed. Oh well, more to learn and have fun with. Ugh! 
