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Old 08-06-2003, 07:38 AM   #1
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I read one of your replies where you mentioned your TSH was 3.9 in the normal range and you ended up being very hypo. Can you tell me how they finally determined that you were hypo. Was is a Free T4 test? If so, what was the result of that test? I have normal TSH's but a low Free T4 .74 (.77 - 1.89) and the doctor still doesn't think it is anything to worry about but I have been having many many symptoms now for over a year.

thanks, Donna

 
Old 08-06-2003, 07:48 AM   #2
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Donna,

What exactly are your symptoms? You may have something else or a combination of things.

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Old 08-06-2003, 08:18 AM   #3
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Hi Peregrine,

Thanks for replying. Before I go any further, the doctor did take some more blood tests, TSH, FT4 and FT3 to see if there were changes.

My symptoms are numerous: muscle cramps, fatigue, orange eyelids, scalloped tongue, skin sensitivities, twitching muscles all over at different times, breaking hair, irritability, impatiences, no libido, weight gain of about 20 lbs, can't lose, neurological symptoms (bugs crawling on my back and deep tickling in parts of my body), "funny" sore throat a couple of times, developed allergies, no energy, etc. I guess I can stop there.

I gave my results earlier, and Meep said it was clearly hypo. He was in the normal range too. The only test I have not had were the antibodies test.

Donna

 
Old 08-06-2003, 08:30 AM   #4
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Donna,

Depending on how your symptoms started, you may also have CFIDS and/or Fibro. The requirement for a CFIDS diagnosis is that the onset has to have lasted at least 6 months (with no let up)and the onset is very "flarey" severe symptoms punctuated by chronic fatigue, as well as other types of symptoms. If you think you might fall into this symptomology you could do a search on google under CFIDS where you will find more definitive information. As I have said before, CFIDS and Thyroid problems frequently go "hand in hand".

All the best!

Peregrine

 
Old 08-06-2003, 08:46 AM   #5
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Thank you,

I originally thought I had fibro. I originally had weird joint pain that migrating bilaterally through my body. Went to doctor after 3 mos. of feeling that way and took tests and all were fine. After more months things started to change, the pain was different and my muscles started to hurt and all the symptoms I mentioned to you developed over time.

My present theory is that I had some kind of virus that affected my thyroid or as you said it could have developed into fibro. I have mentioned fibro to my many doctors, GP, rhemy, neuro and they don't say much except it is diagnosed to much. Anyway, I started looking deeper into hypo and saw my Free T4 was low and jumped on it.

Donna

 
Old 08-06-2003, 06:12 PM   #6
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i was just looking for the info (some of which i seem to have lost and i found SOME of it:

on apl 8, my TSH was 0.58 (0.5 to 5.0), free T3 3.9, free T4 11.1 (using your range, because i've lost mine, and moving the decimal point over 1 point makes 7.7 - 18.9), and i seem to recall my T3 being quite high but i felt reasonably good on that, and then the other antiD's began to kick in ...

sorry for the delay in reply, but that darned sheet must be SOMEWHERE! FAUGH!

jb


[This message has been edited by jinglebts (edited 08-06-2003).]
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Old 08-06-2003, 07:42 PM   #7
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Peregrine, How sure are "they" that fibro and chronic fatigue are not just misdiagnosis' for hypothyroid. There doesn't seem to be much of a difference in symtoms(is there?). Seems like labs don't always tell the story for thyroid. I have a friend with fibro and I am almost positive she is hypo(down to the missing eyebrows). Are there fibro and cf symptoms that don't match with thyroid disease? Thanks, IWL

 
Old 08-06-2003, 08:56 PM   #8
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oh, and you asked about my symptoms ... by the time i was tested, i was waking in leg pain (i mean the pain literally woke me up), i was too exhausted to work, i was too stunned/foggy to read four lines, i used to fall asleep in movies, i was SO constipated (no OTC laxatives worked), i was mega-depressed, my legs were swollen like footballs (still are) ... and all my GP could think to do was prescribe antiD after antiD and compression stockings ...

you see, i'd had some grey-out seizures in sept '02 because of an old stroke and my neuro prescribed clobazam (sp?) which is contra-indicated for depressives, i'd had paxil-poopout (my GP thought, but i tink my thyroid was starting to fail) that summer, and if my GP had just done some bloodwork on my AND noticed that my thyroid was out of whack (another doctor in march '03 noticed that, whom i'd gone to see for something completely other) ...

anyway, after seeing the endo-from-hell in april, i requested, and got, an appt w/another endo who is very good, sympathetic ... and i think i might be doimg better after just three days on 100mcg? (i stayed awake for a movie tonite -- yaay!!)

again, sorry for the delay ...

jb
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Old 08-06-2003, 09:21 PM   #9
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AND one more thing: i can always tell by my reaction to hay fever ... my usual cycle is hay fever, depression, exhaustion (i was dx'd w/cfs in 1987), exhaustion, hay fever shots, recovery ... then hay fever, depression ... etc., followed by a couple of years of recovery ... this year i had hay fever, exhaustion/cfs, i turned out to be hypo (i've not had such a bad hay fever season in years), am getting better but haven't been out to get either hay fever shots OR tests, but i find that hay fever always presages SOMETHING: usually depression, but this year, hypo also ... (my mum died in august 2001 and i think that has something to do with my being hypo) ...

AND i've gained about 12 pounds, which is unusual for me ... but sore throat sounds like cfs to me? when i was in the throes of cfs, i'd had a sore throat for about 6 months (not enough to make ma stay off work tho')

when i first moved to this part of the country, i got migraine after migraine (like two per week), and not knowing the connection but being tired of such severe hay fever, i got the shots -- and mirabile dictu! the migraines went away! after that, the connection between migraine and hay fever became well established (but not before an old-school neuro told me i had some deep-seated psych. problem and i needed a shrink -- he actually snorted with laughter when i mentioned my theory, that there might be an association between the two!





jb

[This message has been edited by jinglebts (edited 08-07-2003).]
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Old 08-06-2003, 09:29 PM   #10
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iwl and donna,

yes, they sure do overlap, fibro/hypo, fibro/cfs, and fibro/cfs/hypo ... so i say treat the symptoms? there doesn't seem to be any other choice ...

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Old 08-07-2003, 04:30 AM   #11
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Quote:
Originally posted by Iwannalife:
Peregrine, How sure are "they" that fibro and chronic fatigue are not just misdiagnosis' for hypothyroid. There doesn't seem to be much of a difference in symtoms(is there?). Seems like labs don't always tell the story for thyroid. I have a friend with fibro and I am almost positive she is hypo(down to the missing eyebrows). Are there fibro and cf symptoms that don't match with thyroid disease? Thanks, IWL
I think there certainly can be overlapping, but that there is also a difference. For one, the start of CFIDS symptoms has to be at least 6 months (feeling deathly ill with symptoms; that is, no let up). Although there are similarites between hypo and CFIDS, such as fatigue, weight gain, brain fog etc. there are also differences, which I've listed below. Not everyone experiences every one of these symptoms, but I believe one has to have at least 11 of them occuring at a time, in addition to the onset stated above, to receive the CFIDS diagnosis. Also, Hypo is treatable. CFIDS is a virus that is still a mystery and, to date, there is no known cure!

Symptoms:
mouth ulcers/exercise intolerance that begins 24 hours after/food and environmental sensitivities/central nervous system problems (CFIDS often referred to as ME)/digestive problems/hot flashes and night sweats/muscle weakness and joint pain/vision disturbance (floaters,blurring, etc.)/word-finding difficulties/short term memory loss/ inability to comprehend/retain what is read/ inability to calculate numbers and impairment of speech and/or reasoning/ need for frequent prescription changes/ depression, irritability, anxiety, panic attacks/ mood swings/ shortness of breath/balance problems/ alcohol intolerance/Raynauds/headaches of a new pattern/sore throat/ irregular heartbeat/low-grade fever/ numbness, tingling and/or burning sensations in the face or extremities/ dryness of the mouth and eyes (sicca syndrome)/ chest pains; rashes/tender lymph nodes/ ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications/fainting and seizures/and, of course, profound exhaustion.

I was diagnosed with Hypo/Hash before CFIDS. I remember with Hypo I tired more quickly and was frequently cold, even in Summer. When I developed CFIDS I was literally "leveled" from the fatigue and spent the first 9 months either in my bed or on the couch. The symptoms effected every bodily system so that I could no longer work and was eventually (a few years later) placed on total disability. I continue to have the typical CFIDS "flares". When I am in remission I feel pretty good, about 80%, but a "flare", which comes about every 3 months (sometimes more often, sometimes less), "completely" levels me again.

I know this is long, but you asked for the difference and I wanted to try to address it. I think there are many people who do not understand CFIDS and many people who may have CFIDS but think their symptoms "are all in their head".

Peregrine




[This message has been edited by peregrine (edited 08-07-2003).]

 
Old 08-07-2003, 06:32 AM   #12
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Well, I don't know what I have. My lab test came back and the results are better than they were last time. This sounds terrible but I was bummed because I thought I would have something definitive to treat. The doctor wants me to do a glucose test Friday and then decide what to do. If the glucose is okay then he said he would be okay with giving me some synthroid, a low dose, to see what it may do. He said I could very well be on the way down to becoming hypo but it just doesn't show up in blood tests yet.

Regarding CFIDS, I thought people can have it with different degrees. Some people are completely laid up and others can still work, etc. Oh, and the sore throat symptom was just a differnt sore throat feeling, like deeper down in my throat where I have never had soreness before. Where my thyroid would be. It happened a couple of times and went away after a day or two.

Thanks you for replying. Anymore info, I love to have. Oh, Jinglebets, I still don't know how they decided you were hypo by your tests. They don't look abnormal to me. Did they just treat your symptoms?

Donna

 
Old 08-07-2003, 06:56 AM   #13
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Quote:
Originally posted by donna2.75:

Regarding CFIDS, I thought people can have it with different degrees. Some people are completely laid up and others can still work, etc. Donna
Yes, this is correct. They say that people usually follow one of three courses:
1) They eventually get better with only an occassional "flare" or none at all (not very common)
2) They get worse with "flares" more frequent and more severe
3) (and the most common) they get neither better or wrose but continue to have periodic "flares"

 
Old 08-07-2003, 02:11 PM   #14
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donna,

when i was originally dx'd in march, my cfs doctor said that at a TSH of 3.9, he thought my thyroid was a little low ... on further inquiry, i found out what my free T4 was, but didn't write it down (i know, big DUH, but i'd just been diagnosed, and THEN found this board) ...

my next day visit was to the neurologist, also for something completely other, but when i crawled in and told him that dr. jain the cfs doc, bless his heart, had said my TSH was 3.9 and therefore hypo (i still didn't know that higher numbers meant lower thyroid activity), he called a doctor who turned out to be the endo-from-hell, who at least prescribed 50mcg synthroid over the phone, and i started listening/complaining/whining on this board!

i still felt just as lousy when i had my blood tested on april 18 (TSH 0.58, free T3 3.9, free T4 11.1) for an april 25th appt, my first with the endo-from-hell (that's when i found out that he had his own agenda -- i made a post called "endo-from-hell" back around that time if you want to read it) ...

so now you see the situation's been quite confusing;
i just had some blood tests for my endo-from-heaven in the last two weeks, and am waiting for him to call me; meanwhile, i've bumped up my dose of synthroid, from the 75mcg i told him i was taking to 100mcg for the last four days and feel a little better ...

sorry to have been so confused about this, but it was a confusing situation, what with my GP filling in for the endo-from-hell until i could actually SEE him (my appointment wasn't for a month, and i felt SO awful! http://www.healthboards.com/ubb/dizzy.gif )

but the synthroid SLOWLY kicked in, with the addition of some cytomel for a couple of weeks, then it stopped working in quite a short period of time (the last 2 weeks?), and now the adjusted dose is starting to work again (i've been under more stress lately -- husband laid off last week, broken hip) ...

so i'll post my story when my new endo's results come in, and hopefully we'll start fresh ...

jb
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Old 08-07-2003, 02:28 PM   #15
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peregrine,

Quote:
Originally posted by peregrine:
Yes, this is correct. They say that people usually follow one of three courses:
1) They eventually get better with only an occassional "flare" or none at all (not very common)
2) They get worse with "flares" more frequent and more severe
3) (and the most common) they get neither better or wrose but continue to have periodic "flares"
i'm the type 3 cfids course, and have always been slightly weak ... i thought it was lack of exercise at first, and finally began working out regularly, NOT to my max. heart rate or anything near it and felt much better ... then came more (negative) work stress, i relapsed, then i had this "strokey" thing, in which the right side of my body began to weaken and continued over two years (been all over the place and had every test known to man, so "they" really can't figure it out except there's this lesion in my brain ), then my thyroid ...

so i think my body's just saying "no!", but "no!" to what? (been reading gabor mate's book "when the body says no" and see much of myself in it) ...

sigh ...
jb



[This message has been edited by jinglebts (edited 08-07-2003).]
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