posted
My daughter also has a condition called PITANDS and which basically means her immune system is attacking the basil ganglia of her brain (controls: processing speed, anxiety/moods, etc) and is also attacking the thyroid. Her T3 & T4 levels were within range but the antithyroiglobulin levels were triple the norm.
They don;t want to prescribe armour for her b/c they said it could screw her up worse but she is miserable. She has gained so much weight is depressed, dry skin, tired, memory loss, etc...basically all the symptoms of hypothyroidism. She is now being referred to as having Hashimotos Disease.
Does anyone have this condition? If so, whatg have your LLMD's done for you...maybe I could suggest something to hers or it's time to move on.
There has to be something I would think??? It makes me so incredibly sad to watch her suffer like this at 15.
Posts: 73 | From USA | Registered: Jan 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Take a look at this recent thread about "Reverse T3" and see if it doesn't sound familiar.
posted
Hmmmm. To the best of my knowledge hashimoto disease has nothing to do with pitands and pandas. Hashimoto disease doesn't need medicine if the thyroid hormone are normal.THE GREAT NEWS is..pitands and pandas are a mental disorder caused by a physical illness (strep related) and is treatable with antibiotics and can often be cured with them. The psyciatric disturbances ...ocd, tics, tourettes that manifest are actually linked to bacteria so treating it with armour isnt necessary or effective..she needs to be on antibiotic therapy. you did not mention if she is or not so please if she is not than get her to a dr. well versed in this childhood illness which is not hopeless by any means! some drs. may say these children need a psychiatrist because it is a psychiatric illness. but it is not..actually it is a physical illness manifesting itself with psyciatric symptoms , and since it is caused by a physical infection the treatment is antibiotics. good luck!
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posted
having trouble editing so will add that mycoplasma is also a culprit in this illness. you didn't mention if she has lyme but if she does she may have mycoplasma as well which is often linked to pitands/pandas
Posts: 38 | From USA | Registered: Jun 2012
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posted
@tickedoff2wice..i'm not a big fan of telling people what to do, but i will tell you what i would do if it were my daughter. The hashimoto, and lyme/coinfections and pandas are 3 different problems so unless your lyme dr. is amazing and can accept the responsibility of the 3 issues then i would separate them. for hashimoto you need to monitor bloodwork every 6 months as it may at some point become necessary to take synthroid. also i would feel her neck every few months for lumps. hashimoto and nodules kind of go hand in hand and these noduoles can become more nodules (nothing to worry about) this is so common that when they opened medical cadavers they found that 80% had nodules..so its no big deal but they should be thought about as on occasion they could become bothersome and have to be removed. Obviously for the lyme i'd stick with a great lyme dr. and for pandas i'm wondering who diagnosed her? whoever it was should have mentioned to you that it is treatable..you can always find the best drs. at the best hospitols(usually teaching hospitols)you can call them and ask for referrals for drs. affiliated with those hospitls. i don't know where you live so can't reccomend anyone. If the lyme dr. can handle the pandas with the lyme that is great since she/he is already treating the lyme with abx. She will be fine as long as she upkeeps the abx..this pitands/pandas is really fascinating because it makes me wonder how many kids and adults are infected with bacterial strains that cause ocd, tics, tourettes and going untreated or being classified as crazy and medicated with antipsycotic drugs and anti anxiety drugs when they need abx therapy. Now that you know what this is and what the treatment is you have the info you need to make the best choices about her care (drs.) btw rifampin is a great drug for her bart but can mess with her metabolism so if possible keep her off it or monitor more closley her thyroid labs if she does take it. other than that just love her to peices as all mothers should love their kids. she'll be fine..it will make her a stronger and more compassionate adult. mahalo!
Posts: 38 | From USA | Registered: Jun 2012
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posted
Thanks Mahalo, this is great advise. My only concern is that her PITANDS Dr. wants IVIG and we can't afford it. Plus I'll be honest, it scares me. What's to say she won't pick up somethkng like Lyme again as it can go undected.
Additionally, to be honest I have yet to hear of one child be completely better from IVIG. It's always improvement then backslide. Although this is a common pattern for chronic illness I have been told the treatments would make it go away.
Many people who thought their child was finished with IVIG have never gotten better and are going back again. I have yet to hear of one successful PANDAS story...improvements yes but all better, no. It just scares me. As far as the abx goes, she's been on them for almost three years now and is really not a whole lot better with the PITANDS and Lyme. Additionally she has developed other problems since the abx. Hasimotos,and 7 other high or abnormal/positive ranges.
If we were just a year in I guess I wouldn't be so concerned. This is truly great advise and I appreciate you taking the time to write it all out..it did certainly make me feel better knowing I am doing (I think) all I can do at this point. I am willing to travel ANYWHERE to get the right Dr who can possible handle it all (or at least work in tandum with other specialists).
God Bless!
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Although hashimotos can occur without lyme, it can also be one of the autoimmune consequences of chronic lyme. It has been noticed by some lyme doctors that autoimmune markers disappear with successful lyme treatment.
So, depending on how connected her's is to lyme, this problem could recede over time.
I also have hashimotos and lyme and am taking thyroid meds because otherwise my hair falls out and I am too tired to do anything. But thyroid issues run in my family, so it is hard to say exactly why hashimotos has hit me.
My suspicion is that all autoimmunity comes from chronic infection of some kind.
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posted
That is a very good point Poppy and it's encouraging to hear you say that it may dissapear with sucessful treatment. Although 3 years is a long time! Of course everyone is different but this seems so long to me for her to be having these things drag out...and additionally gain more problems...
Do you take synthroid or Armour? Do you have a preference and has it helped your hair issue? So basically it sounds like some doctors will treat depending on the symptoms too. See both of hers won;t treat (even though she has ALL the classic symptoms of Hypo) because her T3 & T4 are within range. I am going to go back however and see if a reverse T4 was done.
Her doctor is worried that if he were to put her on them it would make her thyroid worse and bring out more problems long run..but then I've seen studies when 60 Hasimotos pts took the meds and 60 didn't clearly the ones who did their anti-thyroglobulin levels came down.
I always feel I never know where we stand with anything anymore...but I guess that's holds true for the majority of us with this dreadfull illness.
Thanks for the imput and I agree with you on the latter statement in regards to autoimmunity...let's just hope more doctors get on the ball with this sooner rather than later
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Thyroid treatment is nearly as contentious as lyme disease, with the same situation of relatively few docs getting it right. It may be too much to expect a lyme doc or most gp's to get it right. So, I found that going to a specialist recommended by the Broda Barnes Foundation got me on the right track. Now I have a gp that is continuing my prescriptions that after much experimentation have best controlled my symptoms.
If you are the researching type, you might want to check Amazon for Barnes's book (old but good), and the one by Mark Starr, MD, which isn't written professionally, but he builds on Broda Barnes, and the newest edition has a chapter on hashimotos and graves diseases. Don't know what he says about them.
My experimentation covered all the bases, starting with synthroid, then adding cytomel. After that I tried compounded T3 only, then other things which have slipped my mind at this point. Armour worked best until they changed the formula, and now I have to get the old formula out of the country. A hassle. Mary Shomon's website (http://thyroid.about.com/) has more info. A lot of it good, however I don't agree with her stance on iodine supplementation.
The thing is that the thyroid is working with the immune system, so it seems to me that you would want the benefits of thyroid hormone, especially with infectious disease. And hypothyroid people tend to have a lower body temp, which pleases spirochetes. The effect of lyme on the thyroid results in a better environment for the ketes to prosper.
So, you see it is not easy to get proper treatment for thyroid issues either. Doctors used to go more by symptoms, and treated more people for hypothyroidism. Now they go by lab tests and frequently ignore symptoms. Just recently there was a big change in the TSH level that mainstream recognized as indicating hypo. That says to me that a lot was lost when lab tests became king.
I should add that people respond differently to thyroid meds. Synthroid does work for some. The other thing is that it can take a while to get adjusted to any thyroid med. The process of finding the right one and the right dosing for any particular person can take a while.
[ 06-17-2012, 10:16 AM: Message edited by: poppy ]
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Sammi
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posted
tickedoff2wice, I am sorry your daughter is so sick.
I had hypothyroid symptoms for years. Doctors kept telling me my results were normal. I knew I had hypothyroidism. Finally a doctor ran the antibody tests. The normal range for TPO was 0-34 and mine were over 2000! I have Hashimoto's Thyroiditis.
Some people with Hashimoto's have results in the normal range but treatment is warranted. My results were in the low normal range. There is a lot of room to work in the normal range.
Once I began treatment, I found that I feel best when the Free T3 and Free T4 are in the upper 1/3 of the range. It took me years to find a doctor to treat by symptoms (and it is not an endocrinologist). Getting treated for this has definitely helped me.
What are you daughters Free T results? What does her Lyme doctor say about this?
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posted
@tickedoff2wice: why in the world does your pitands dr want to give her ivig? are her immunogobulins depleted? what does this have to do with pitands? She needs abx for this. how would any child get better from this, i dont understand. as for her getting lyme again if she's on abx don't worry about it and when she is cured her dr. should keep her on abx as profolatic.you can pm me with your location and this week i can get some dr referrals...has your lyme dr. discussed this with you..since she is on abx perhaps its not necessary yet for another dr. as for the connection between lyme and hashimoto..personally i think there is one..about 3 years into my treatment i developed hashimoto as well.. my number on some test (cant remember what) was over 800..it should have been in the 10's. but mt tsh, t3 and 4 were normal (btw you keep saying her t3 and 4 are normal but neglect to mention her tsh) i went to see an endocronologist for the first time in my life..he said i didnt need meds but to monitor..but as soon as he felt my neck he felt what he thought was a nodule..the biopsy however revealed it was a tumor so i had it removed..i didnt even resalise until my thyroid was removed how much better my neck felt., it never occured to me to mention i had pain and burning in my neck because i just assumed it was the lyme but once the thyroid was out i felt alot better......so my personal opinion..i don't think i'd have had that if i wasn't bit..but i don't know. just keep up with her bloodwork and should her tsh get out of range then the dr. will give her meds. don't worry about the hashimoto..that's something only needs monitoring..i would concentrate on the tick stuff and getting the abx into her which will also treat the pitands/pandas. peace
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Mahalo, you are new, so you probably don't know that lyme people (and others too) have a hard time reading big blocks of text. So, throw in some paragraphs when you post, so we can read 'em.
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