Topic: It's NOT LYME It's HASHIMOTOS DISEASE pls help
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi All-
I've recently posted about some strange symptoms and thought I might be having some thyroid issues..
Just got back my tests:
Antithyroid Peroxidase: positive-- 49 with the limit being anything <35. Free T3: 2.31 range is 2.0-4.9 Free T4: .99 range is.75-1.54 TSH: 2.381 range is .5-6.0. Last August 2010 it was 3.11.
New Symptoms: can't think clearly; ache all over; carpal-tunnel feeling in wrists; stiff toes, increased morning stiffness; fatigue; dizziness; recent late menstrual cycle with horrible cramps and outbreak of adult acne, which I never have; hurts to raise my arms up to type; neuropathy; sore throat; cold hands and feet; recent weight gain of 5 lbs around midsection
Questions:
1) Shouldn't this be treated even though the TSH is in the normal range? It was higher last fall at 3.11...I'm afraid I'm about to get caught up in the land of doctors who won't treat this because I have a 'normal' TSH
2) Shouldn't the Free T3 be higher?
3) Can someone recommend a good endocrinologist familiar with Hashi's who will treat regardless of TSH? I'll travel anywhere...I feel Horrible!....
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I know an excellent endocrinologist. He diagnosed me with lyme disease after I went from doctor to doctor for at least 5 years looking for a diagnosis.
If endos treat Hashi's then I would expect this doc would know how to treat it.
He is in the Rockville, Maryland area. He does not take insurance. If you want his name, send me a private message.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Lyme disease hits the thyroid hard. Some speculate this is because the bacteria do better in cooler temps, and hyptothyroid people have lower body temps and cold extremities.
Yes, your T3 and T4 are both low. Should be on the upper end of the range instead.
Can't help you with a doc, though, the establishment docs are not getting this right. Have you looked at Mary Shomon's website, maybe some hints on getting docs there. http://thyroid.about.com/
Not sure she is on the same page with me on iodine, though.
Maybe someone more alternative, like a naturopathic doc, if they are authorized to Rx, because you will need a prescription and help to determine the right dose. This can take a while.
[ 08-29-2011, 04:51 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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Bugg
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Member # 8095
posted
Thanks so much for all of this info...If you have antithyroid peroxidase antibodies like mine which was 49 with a reference range of <35 doesn't that mean you have Hashimoto's and need treatment?
Posts: 1155 | From Southeast | Registered: Oct 2005
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Sammi
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Bugg, I am gald you had the antibodies and the Free T's tested. People who have Hashi's can have normal results but high antibodies.
As I said before, I would feel terrible with your TSH. Some people, including myself, feel their best when the Free T's are in the upper 1/3 of the range.
I use Armour. Almost as soon as I started it, my TSH became suppressed even though the other ranges were too low. Many doctors mistakenly rely only on the TSH. It can be challenging to find one who goes by symptoms and the Free T levels.
What state are you located in?
Posts: 4681 | Registered: Oct 2000
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posted
I didn't think your labs were that bad. I have hoshimotos and hypothyroid and my last TSH was 4. something. I feel better at the higher end of normal then the low. Not sure if I still have hoshimotos since my thyroid is now just a chewed up piece of scar tissue.
Pretty sure lyme did it.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
What do the thyroperoxidase antibodies attack? There lies the answer...
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Lymeorsomething
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Member # 16359
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I have hashi's too. Don't rule out lyme involvement based on those numbers. By all means, optimize thyroid but it may not correct all those symptoms.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Can't give any answers but will be following this discussion. Hubby just got back some new bloodwork -- his TSH is 10. something. Was normal back in December. My guess is that one of his 4 high fever spikes probably affected the thyroid somehow.
No wonder he is tired with that TSH and low iron.
Still waiting on the T3 number -- T4 was normal and I am pretty sure the doc did not test for thyroid antibodies.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Bugg
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Member # 8095
posted
You're all so wonderful..thank you for your help..I'm going to read through your posts again...
I guess I'm really just seeking confirmation from those with Hashi's/hypothyroidism that my symptoms/tests sound like Hashi's...Does it matter that my antithyroperoxidase antibodies aren't higher than they are?
Does anyone have a medical abstract/authoritative journal article I can take to my doctor to show her that this is most likely Hashi's which needs treatment even though my TSH is normal....
I already have the pubmed abstract that discusses how lyme disease can result in Hashi's...
Unfortunately, I live in TN and don't expect any help here including from Vanderbilt...I'm willing to travel anywhere for care but don't want to pursue this if my symptoms/results don't ring true for other thyroid sufferers on this board....
Posts: 1155 | From Southeast | Registered: Oct 2005
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nefferdun
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Too tired tonight to read all the posts. I just want to tell you low dose naltexone is very good for reversing thyroid disease as well as supporting the immune system.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Sammi
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I have Hashi's and take LDN. LDN may affect thyroid levels for some, but it has had no effect on my levels.
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Sammi
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Bea, has your husband had the Free T3 and Free T4 tested? If not, it would be good to have them tested when you have the antibodies tested. His TSH is very high.
There is usually a lot of room to work within the normal range. Some people feel best when the Free T's are in the upper 1/3 of the range.
Posts: 4681 | Registered: Oct 2000
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posted
You were given several suggestions on how to find a doctor in your area. Doubtful that you can convince a conventional doc.
Posts: 8430 | From Not available | Registered: Oct 2000
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Just found a very interesting article written by a lyme literate doc who explains what he calls non-thyroidal illness or functional hypothyroidism. Have you had your reverse T3 tested?
Sammi - Will be sending a fax to hubby's new LLMD later this week when he gets the rest of his outstanding bloodwork results to discuss additional testing.
Obviously there is a problem with hubby's HPA axis -- not sure at this point whether that is driving the fevers or if they are just a babesia symptom, but after one day on the new pulsing schedule of higher babs meds it is already affecting his temp -- got to 100.6 last night and didn't want to come down. I am a little nervous about adding in thyroid meds -- even Armour thyroid as in many people that raises body temp.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Sammi
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Bugg, I sent you a PM.
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map1131
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Member # 2022
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I find all this thyroid & hashimoto's so confusing. I should have gone to thyroid school. I've been hypo long before lyme & co, or lyme goes back even further than I realize?
With my test results sitting in front of me to compare my results the last 9 mths with you guys is so way over my head.
It's even got me crying now because studying it all has now put me in lyme brain fog. I will click on the above urls later, when I find some brain cells.
Thanks lou, dmc and Carol. I've tried so many times before to compare my results with others posting about how we need to be at higher ends and low ends.
I can't seem to get it. But I know the last 2 times my TSH has been .02 & .12. My thyroid antibodies is 1226 & 700, pretty far off from <35.
I know something wrong but I can't comprehend. It's a shame that I can't even get a endocrinologist to understand and I know in my heart.....they are screwing things up messing with me.
My PCP will listen if I can figure it all out and help me. I'll come back with a clear head and view later.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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Jackie51, I find your question about strep interesting. Do you have data/medical abstracts that show a connection between hypothyroid and a strep carrier?
Recent strep blood tests show my strep number very high. My PCP thinks it's from an old infection. I believe there is great possiblity that it's still in my body having it's fun.
My thyroid numbers have been so inconsistent the last couple years. I just need to find that happy medium for me...not the doc....not the lab.
Thanks, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi All-
Thanks so much to all of you who have helped me with this thyroid issue...I appreciate all of the private messages as well..
I just haven't responded as I've been feeling SO HORRIBLE...very weak, like I'm in slow-motion, aching all-over and forgetful...My mother is actually staying with me right now because I'm so disabled at the moment...
I'm about to go through another round of tests and potentially going to see a diagnostician at Johns Hopkins...
I'll let you know the results in the event they might help someone on this board......I really hope we're on the right track with the thyroiditis (possibly Hashimoto's encephalopathy) but won't know until more testing...Not sure, though, as no one else on this board with Hashi's seem to have symptoms as severe as mine...Who knows.....Thanks again so much for your kindness!! You people are amazing!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Just looked at your numbers, and although perhaps not optimal, aren't really that bad (to me). It seems like your symptoms are worse than your numbers indicate.
I'd suggest retesting, and also getting TgAB done too (another Hashimoto antibody).
As a reference, I had about 3-4 tests done, and my TSH was coming back > 3, my TPO at the time was normal, yet my TgAB was around 200.
Tricky part with antibody testing is they may vary, a lot. I've had a TPO around 50, yet other times it's normal.
You can ask for a thyroid ultrasound, to see how your thyroid looks. If lumpy or fat, or if it has nodules, I'd think most endos would consider the Hashi diagnosis.
Getting treated is another matter. Many docs won't treat if your TSH is normal, so you may need to look around some. My endo will treat if TSH > 3 + antibodies + symptoms, or abnormal ultrasound.
[ 09-06-2011, 01:40 PM: Message edited by: Lemon-Lyme ]
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lymednva
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My LLMD dx'd me with non-thyroidal illness. While it has not been something that made a huge difference in how I feel, I do think it's just one more piece of the puzzle of returning to the best possible health for me.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I have Hashimoto's that was diagnosed just before Lyme was diagnosed...My Endo isn't Lyme-literate, so it's a bit hard to find the connections...but she does say it's very rare for a man of my age (29 at the time) to have Hashimoto's (no family history of any thyroid problems)
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