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Old 03-02-2004, 09:08 AM   #1
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Unhappy Hypothyroid and MS?!

I was diagnosed with MS last year. But MS has no conclusive test. It is diagnosed by eliminating other things. Hypothyroidism, which has all of the same symptoms I was experiencing, was never even considered. *I* certainly didn't think of it. My mother has often mentioned that I need to have my thyroid checked out (she was dx'd hypo when 16 yo). I've tried that, but the doctors have only tested my TSH and told me to quit imaging things. Through internet searches in the last few weeks, I'm finding a plethora of tests that would have revealed other elements like antibodies and such. So I went for testing again, armed with my new info. But, again, I was told the protocol is to test the TSH and only do those other tests if it comes back abnormal. GRRRRR!!!

ANYWAY! Just yesterday, I found online that optic neuritis can be associated with hypothyroidism. That floored me. It was the presenting symptom when I was dx'd with MS. Could it have been a mistake? Is it much simpler than MS? How can I ever know if I'm hypothyroid like Mom if I can't get a doctor to listen to me?!

 
Old 03-02-2004, 10:39 AM   #2
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Re: Hypothyroid and MS?!

Find a new Doctor. There are quite a few of us on here who have been through close to the same thing and we just kept searching until we found the right Doc or at least as close to one as we can get. Learn everything you can about the testing and hypothyroidism in general so that you can go in and request what you want done.
If all else fails, there is a place where you can have TSH, Free T3, and Free T4 tested on your own. It's called healthcheck USA. I have used them as have many other people on this board. This will give you something in hand to take to the Doctor's with you. I can't believe with your family history that wasn't the first thing they thought of.........yes I can believe it.

 
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Old 03-02-2004, 12:07 PM   #3
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Re: Hypothyroid and MS?!

what I do not understand is you guys have to pay out of pocket for these tests don't you? (if no private insurance?) so what does it matter to have the doctor check off the required tests.

Through this board I learned how to 'ask my doctor' and since we up here have a totally different medical system, it does not cost me anything to have this done. It was done, and there were no great big differences in the levels compared to the ranges. BUT and it is a BIG BUT (not mine hahah) but I said to the doctor, well, this is good, now we have a 'set of numbers' to base further tests on, and I will ask for those same tests, each year when I have the rest of the stuff done. (In the autumn)

So go for the test company that Miper suggests you try, and go armed to your doctor, I agree with even just your FAMILY history of Thyroid stuff, makes sense for your doctor to just 'get on with it'

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Old 03-02-2004, 04:20 PM   #4
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Re: Hypothyroid and MS?!

And do not assume that your Doctor knows enough about thyroid disease to know what "normal" is. Most Doctors and labs still use the ancient TSH range of 0.4 - 5.0, or something resembling that.

Most Doctors truly knowlegable with thyroid disease will call anything over 2.0, suspicisious, and will investigate further. Often, when you have a Doctor refusing to look further, their "normal", is the ancient range.

There are actually some hypothyroid people who's TSH ends up under 1, or even nearly undetectable, before their thyroid hormones are ballanced, though that's not the prevelent case.

But most of us here, have fired several Doctors, on our way to diagnosis.

One of the last Doctors I fired, proclaimed my thyroid hormones "normal", when I knew better, and off I went to the Neurologist for the MRIs of the Corpus Collosum.... I'm sure you know all about that.
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Last edited by Divermon; 03-02-2004 at 04:25 PM.

 
Old 03-05-2004, 07:09 AM   #5
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Wink Re: Hypothyroid and MS?!

Lisa P

I pretty much went through the same thing as you. I lost vision in my eye for 5 min. along with bright spots and tingling around my mouth and left arm. I have been through terrible fatigue (felt drunk for three years straight). I have had 3 mri's and seen 3 neuro's (including ms neuro). No signs of ms. I has been six years so I finally demanded to try thyroid meds. My skin and hair is better, my brain fog has improved. However, I still feel alittle off balance. I am wondering if something in my neck is triggering this. After feeling drunk and fatigued for so long and trying to stay upright my posture is distroyed.

I have an appointment to see an osteopath on April 5. I would like his opinion. Actually I wish I had of done this six years ago.

If they have no concrete evidence of ms, I would still keeping searching for what is causing your symptoms.

Are you on MS meds?

Liz

 
Old 03-05-2004, 07:57 AM   #6
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Re: Hypothyroid and MS?!

I have another appointment with my new neuro on April 5th. I saw him once last summer to get my Avonex perscription transferred from Texas. I got such a cursory examination that I was out of there in half an hour! The man had the flu or a bad cold and shouldn't have been working that day anyway (I thought)-- but medical school DOES sort of "train" these guys to just ignore it all and "get on with it."

 
Old 03-05-2004, 08:41 AM   #7
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Re: Hypothyroid and MS?!

I went through the whole MS thing, too. My cousin has MS, and I had all the symptoms, etc, so i was pretty much dx'ed. I still had questions, so I kept looking. It turned out I had Hashi's. that wasn't dx'ed until i did a thyroid antibody test and had an ultrasound done on my thyroid. my dr is amazing and always sends peope to get a thyroid ultrasound and always does a complete thyroid lab workup. i am lucky to find him, but it took me years. stay strong and listen to your body. good luck!
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Old 03-05-2004, 06:45 PM   #8
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Re: Hypothyroid and MS?!

I don't have a goiter. My TSH is normal (1.72). But my MRI showed lesion(s?) and my lumbar puncture (spinal tap) was "consistent with some who has MS." And I've had optic neuritis three times. So in spite of all that, it could still be my thyroid and only my thyroid?! Should I talk about this to the neuro in April?

 
Old 03-05-2004, 11:13 PM   #9
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Talking Re: Hypothyroid and MS?!

Quote:
Originally Posted by Divermon
And do not assume that your Doctor knows enough about thyroid disease to know what "normal" is. Most Doctors and labs still use the ancient TSH range of 0.4 - 5.0, or something resembling that.

Most Doctors truly knowlegable with thyroid disease will call anything over 2.0, suspicisious, and will investigate further. Often, when you have a Doctor refusing to look further, their "normal", is the ancient range.

There are actually some hypothyroid people who's TSH ends up under 1, or even nearly undetectable, before their thyroid hormones are ballanced, though that's not the prevelent case.

But most of us here, have fired several Doctors, on our way to diagnosis.

One of the last Doctors I fired, proclaimed my thyroid hormones "normal", when I knew better, and off I went to the Neurologist for the MRIs of the Corpus Collosum.... I'm sure you know all about that.
my TSH is .01 (you'd think i was hyper!!) but my fT4 is 13 (range 10 to 20) ... so one should always go by the fT4 -- it's more accurate ... (i'm tired still, and weak) ...

have you had a spinal tap? if so, was it negative? for other reasons, i had two of them (both negative for just about anything you can think of, except evidence of life), and of course we weren't thinking hypO then (i have a travelling paralysis on my right side, which thankfully has stopped, and no one thought that it might be thyroid disease, with the huge ranges that existed then) ...

our bodies are a mystery -- thank the lord for the 'net! lisa p, you just hang on in there, and remember that a neuro is not an endo, or even a GP ... perhaps you could ask your neuro ("please, just humour me!!") for a thyroid panel (don't forget the free T4) ...

jb
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Old 06-27-2005, 03:52 AM   #10
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Re: Hypothyroid and MS?!

It's been over a year since this thread was started and I STILL have had no conslusive testing done. Well, one doctor (actually a P.A.) tested me for antibodies. That was negative. But isn't there more than one test? Never had the ft3 or ft4.

I've been off my MS meds since last summer (financial reasons). Symptoms about the same, maybe a little more frequent. I can't afford the self-testing thing (honest--NO $$), but I may be able to get into a free clinic nearby, but I don't know if they will be able to test either. I give up!

So where do I go from here?

 
Old 06-27-2005, 04:39 AM   #11
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Re: Hypothyroid and MS?!

I read through the whole thread and boy you have been though a lot! I am not qualified to talk about MS testing and treatment, but if you would like to know clearly about your thyroid function you need the TSH (which I think you know) the FT4, FT3 and the antibodies for Graves Disease and Hashimotos thyroid disease. Many with thyroid problems also get their adrenals tested (cortisol and DHEA) tests.and the female hormones and ferritin levels....You mentioned you had lesions on your thyroid? Nodules on the thyroid can cause problems ...what is your status now? It is hard to know what to suggest as I don't know what symtpoms you have and perhaps you could say some of them...might give us a clearer idea. Hope this helps a bit...and I hope someone else will have some more helpful suggestions...

 
Old 06-27-2005, 05:36 AM   #12
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Re: Hypothyroid and MS?!

Hi Lisa P:

I have BOTH myself. It sucks because when I'm having issues I never know if it's from my thyroid or my MS. Small things like fatigue, I have major fatigue from MS and add fatigue from my Hypo and it's really bad.

I would suggest you go to the NMSS website. You can google it. They can get you in touch with the chapter in your area and they have all kinds of programs available to help you out. They have programs to get MRI's for free and medication from sources such as Biogen, the makers of Avonex who offer programs for free or reduced cost medication therepy. Please visit them to keep on top of this MS thing. It is important to treat your MS. There is also another site the MSAA=Multiple Sclerosis Association of America that also offers some programs to help you.

Take Care and please check out these sites and get in touch with one or both of them to get some help for your MS.

 
Old 06-27-2005, 06:26 AM   #13
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Re: Hypothyroid and MS?!

Wow! Thank you so much!

 
Old 06-27-2005, 08:06 AM   #14
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Re: Hypothyroid and MS?!

Hi Lisa_P. I am sorry you have been dealing with so much. Since you do not have a definite diagnosis of MS, I recommend that you consider Lyme disease as a possibility. Many people who have Lyme were first diagnosed with other diseases, including MS. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many seemingly unrelated symptoms. Ticks can also transmit several co-infections. Lyme disease is the second fastest growing infectious disease in the US after AIDS, yet many doctors do not realize how serious and prevalent it is. Lyme disease can cause brain lesions. The Lyme disease board at this site is a great place for information.

Regarding your thyroid, as others have said you definitely need the Free T's and antibody tests done. Many people, including myself, who have Lyme also have hypothyroidsim.

Do not give up, you will find out what is wrong.

 
Old 06-27-2005, 08:32 AM   #15
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Re: Hypothyroid and MS?!

Just for reference, the symptoms of hypothyroidism:

Symptoms
Symptoms of hypothyroidism usually develop slowly over months or years. Symptoms and signs may include:
Coarse and thinning hair.
Dry skin.
Brittle nails.
A yellowish tint to the skin.
Slow body movements.
Cold skin.
Inability to tolerate cold.
Feeling tired, sluggish, or weak.
Memory problems, depression, or difficulty concentrating.
Constipation.
Heavy or irregular menstrual periods that may last longer than 5 to 7 days.
Other, less common symptoms may include:
An enlarged thyroid gland (goiter).
Modest weight gain, often 10 lb(4.5 kg) or less.
Swelling of the arms, hands, legs, and feet, and facial puffiness, particularly around the eyes.
Hoarseness.
Muscle aches and cramps.



The symptoms of MS:

Symptoms may come and go or become more or less severe from day to day or, rarely, from hour to hour. Symptoms may become more severe with increased (or, less commonly, decreased) body temperature or after a viral infection. Symptoms of MS, such as spasticity tremors, pain, and difficulty thinking clearly, are similar to those of many other conditions and do not necessarily mean you have MS.

Early symptoms
The most common early symptoms of MS include:
Muscle or motor symptoms, such as weakness, leg dragging, stiffness, a tendency to drop things, a feeling of heaviness, clumsiness, or a lack of coordination (ataxia).
Visual symptoms, such as blurred, foggy, or hazy vision, eyeball pain (especially with movement), blindness, or double vision. Optic neuritis—a sudden loss of vision and eye pain—is a fairly common first symptom, occurring in up to 23% of those who develop MS.
Sensory symptoms, such as tingling, a pins-and-needles sensation, numbness, a bandlike tightness around the trunk or legs, or electrical sensations moving down the back and legs.
Balance symptoms, such as lightheadedness or dizziness, and a spinning feeling (vertigo).
Bladder symptoms, such as an inability to hold urine (urinary incontinence) or to completely empty the bladder, or a loss of bladder sensation—an inability to sense that the bladder becoming full until there is a sudden, urgent need to urinate.
Advanced Symptoms
As MS progresses, symptoms may become more severe and may include:
Increased muscle problems, such as weakness, leg dragging, clumsiness, or lack of coordination.
Stiff, mechanical movements (spasticity) or uncontrollable shaking (tremor), which may make walking difficult. A wheelchair may be needed some or all of the time.
Pain and other sensory symptoms.
Incontinence or, less often, an inability to urinate (urinary retention).
Constipation and other bowel disorders.
Male erectile dysfunction (impotence) and female sexual dysfunction.
Cognitive and emotional problems, which are common in people who have had MS for some time.
Cognitive problems, such as memory loss, difficulty concentrating, reduced attention span, or difficulty finding the correct words.
Emotional symptoms, such as depression, anxiety, and anger. A rare symptom is excessive cheerfulness that seems inappropriate.
Source: *****

Honestly, going by those symptoms, I would almost say that's ME. But I don't think I have MS. And I don't see how a competent clinician could make such a mistake. I realize there's no definitive test for MS, and that it's diagnosed with an RO (rule-out) mentality, but WOW. Good luck with this.
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Last edited by SangReal; 06-27-2005 at 08:41 AM.

 
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