Re: Thyroid Neuropathy and What Next?

[Guest guest]

Does anyone have any experience with or research regarding Thyroid Neuropathy? Namely, the pins/needles, electrical shock sensations, tingling, etc. in the extremities and body. I've had it for 6 years and it's not resolving yet, even though I've started in May on T3 sustained-release, now at 12.5 mcg. in the morning.

Now for the big question....what next? Opinions?

All blood tests were taken at 7:30 a.m. without taking my T3 yet. I did take my 25 mg. of sustained release hydrocortisone (I have 's Disease).

Before I started T3 in May '08. Started on 5.0 mcg. timed release T3

TSH = 4.2

Free T3 = 2.5

Free T4 = 1.26

Titrated dose to 7.5 mcg sustained release in a.m., retested 1 month later

TSH = 3.0

Free T3 = 2.6

Free T4 = 1.1

Titrated dose to 10 mcg. then 12.5 mcg and retested 1 month later

TSH = 2.5

Free T3 = 2.5

Free T4 = 0.9

My FERRITIN is now 63 (was 53 in June)

Serum IRON is 90 (was 68 in June)

I'm taking Iron and B12 and 1/2 tab of Iodoral plus numerous supplements, vitamins, full BHRT. I still feel awful. Extreme fatigue, intermittant blurry vision, you know the drill......

So......since it's obvious that my a.m. Free T3 range doesn't change, I'm still not converting enough T3 from T4 and my Free T4 continues to drop with each dose increase what next??? My doc is pretty reasonable about doing what I ask, but I'm not sure WHAT to ask for next. The only way I can tolerate thyroid meds seems to be in time release. Before this, it would crash my adrenals no matter how much extra hydrocortisone I would take.

My doc suggested upping the a.m. T3 time release dose to 15 mcg. (from 12.5) but it makes my head feel dizzy and all wonky. And, my heart rate increases, which makes my heart palps even worse.

If T3 is the ACTIVE thyroid hormone, does taking T4 (synthetic or otherwise) really make THAT much difference in the way you feel, energy levels, reduction of thyroid symptoms? And, if I do go to Armour, then I'm back to dealing with the 'dump' of T3 in my system (not time release).

Suggestions? Ideas?

Steph Stultz

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[Guest guest]

The more T3 you take, the more your T4 will drop, as the T3 suppresses your TSH and your production of T4.

Is there some reason you are taking only T3? Most folks also need some T4. What you may need is highly individual.

From my own experience, the only time I am cold is when my T4 levels are too low.

>> > Does anyone have any experience with or research regarding Thyroid Neuropathy? Namely, the pins/needles, electrical shock sensations, tingling, etc. in the extremities and body. I've had it for 6 years and it's not resolving yet, even though I've started in May on T3 sustained-release, now at 12.5 mcg. in the morning. > Now for the big question....what next? Opinions?> > All blood tests were taken at 7:30 a.m. without taking my T3 yet. I did take my 25 mg. of sustained release hydrocortisone (I have 's Disease).> > Before I started T3 in May '08. Started on 5.0 mcg. timed release T3> TSH = 4.2> Free T3 = 2.5 > Free T4 = 1.26> > Titrated dose to 7.5 mcg sustained release in a.m., retested 1 month later> TSH = 3.0> Free T3 = 2.6> Free T4 = 1.1> > Titrated dose to 10 mcg. then 12.5 mcg and retested 1 month later> TSH = 2.5> Free T3 = 2.5> Free T4 = 0.9> > My FERRITIN is now 63 (was 53 in June) > Serum IRON is 90 (was 68 in June)> > I'm taking Iron and B12 and 1/2 tab of Iodoral plus numerous supplements, vitamins, full BHRT. I still feel awful. Extreme fatigue, intermittant blurry vision, you know the drill......> > > So......since it's obvious that my a.m. Free T3 range doesn't change, I'm still not converting enough T3 from T4 and my Free T4 continues to drop with each dose increase what next??? My doc is pretty reasonable about doing what I ask, but I'm not sure WHAT to ask for next. The only way I can tolerate thyroid meds seems to be in time release. Before this, it would crash my adrenals no matter how much extra hydrocortisone I would take.> > My doc suggested upping the a.m. T3 time release dose to 15 mcg. (from 12.5) but it makes my head feel dizzy and all wonky. And, my heart rate increases, which makes my heart palps even worse.> > If T3 is the ACTIVE thyroid hormone, does taking T4 (synthetic or otherwise) really make THAT much difference in the way you feel, energy levels, reduction of thyroid symptoms? And, if I do go to Armour, then I'm back to dealing with the 'dump' of T3 in my system (not time release). > > Suggestions? Ideas?> > Steph Stultz

[Guest guest]

The only time I have experienced neuropathy

was when they tried me on Paxil, an antidepressant. I had no idea that it was

side-effect. I couldn’t figure out what was going on with me. It was

not pleasant at all.

Kim in No Texas

__

[Guest guest]

Obvious question... has diabetes been ruled out?

Marti

>

> Does anyone have any experience with or research regarding Thyroid

> Neuropathy? Namely, the pins/needles, electrical shock sensations,

> tingling, etc. in the extremities and body. I've had it for 6 years

> and it's not resolving yet, even though I've started in May on T3

> sustained-release, now at 12.5 mcg. in the morning.

>

> Now for the big question....what next? Opinions?

>  

[Guest guest]

Hi Marti,

Yes, it has been ruled out. I had hypoglygemia early on, which is now under control since I changed my diet 6 years ago. I began testing my blood sugar with a FreeStyle meter, just to see if my 'crashes' are adrenal or blood sugar related. My fasting a.m. glucose runs about 70-85 and my 'normal' blood sugar runs 100-110. My doc also checked my a.m. fasting insulin which was 15.3 (range 1.9-23.00) and said it looked good. I know about 15-20% of 's patients also have diabetes, so I'm grateful I don't.

Steph Stultz> To: Texas_Thyroid_Groups > Date: Fri, 22 Aug 2008 12:31:27 -0500> Subject: Re: Thyroid Neuropathy and What Next?> > Obvious question... has diabetes been ruled out?> > Marti> > > > >> > Does anyone have any experience with or research regarding Thyroid > > Neuropathy? Namely, the pins/needles, electrical shock sensations, > > tingling, etc. in the extremities and body. I've had it for 6 years > > and it's not resolving yet, even though I've started in May on T3 > > sustained-release, now at 12.5 mcg. in the morning.> >> > Now for the big question....what next? Opinions?> > > > > ------------------------------------> >

[Guest guest]

Initially, the doc thought that my Free T4, being in the '50 percentile' was adequate for the moment and that MAYBE by increasing Iodine (since I don't have Hashi's) and Iron that my Free T4 would go up, which obviously isn't happening. My Free T3 was way low so her reasoning was that if given just T3 for now I would feel better.

I had SOME improvement, but not much and now that my body feels like it's readjusted I'm back to square one.

In addition, I'm also having all my amalgam fillings out since there is some data that suggests increased levels of mercury in the system impairs T4 to T3 conversion.

The doc is treating her own daughter, who has many of the same issues and is giving her T4 and T3. I'll be e-mailing doc next week but I wanted input from you all before I suggested adding any T4. I've had such a terrible reaction the 3 times in the last 6 years that I tried to take Armour even in very small doses, but since I'm now in full replacement hydrocortisone for my adrenals, my thinking is to add SMALL amounts of T4 and titrate up the dose, just like we're doing with T3?

I think my trepidation comes from the fact that I know if I have a bad reaction to too much T3 it's out of my system quickly, but if I start having a bad reaction from additional T4 it's already built up in the system and takes weeks to diminish. That's what happened 6 years ago and I was SO sick for SO long.

Steph Stultz

To: Texas_Thyroid_Groups From: texasthyroid@...Date: Fri, 22 Aug 2008 17:09:14 +0000Subject: Re: Thyroid Neuropathy and What Next?

The more T3 you take, the more your T4 will drop, as the T3 suppresses your TSH and your production of T4.

Is there some reason you are taking only T3? Most folks also need some T4. What you may need is highly individual.

From my own experience, the only time I am cold is when my T4 levels are too low.

>> > Does anyone have any experience with or research regarding Thyroid Neuropathy? Namely, the pins/needles, electrical shock sensations, tingling, etc. in the extremities and body. I've had it for 6 years and it's not resolving yet, even though I've started in May on T3 sustained-release, now at 12.5 mcg. in the morning. > Now for the big question....what next? Opinions?> > All blood tests were taken at 7:30 a.m. without taking my T3 yet. I did take my 25 mg. of sustained release hydrocortisone (I have 's Disease).> > Before I started T3 in May '08. Started on 5.0 mcg. timed release T3> TSH = 4.2> Free T3 = 2.5 > Free T4 = 1.26> > Titrated dose to 7.5 mcg sustained release in a.m., retested 1 month later> TSH = 3.0> Free T3 = 2.6> Free T4 = 1.1> > Titrated dose to 10 mcg. then 12.5 mcg and retested 1 month later> TSH = 2.5> Free T3 = 2.5> Free T4 = 0.9> > My FERRITIN is now 63 (was 53 in June) > Serum IRON is 90 (was 68 in June)> > I'm taking Iron and B12 and 1/2 tab of Iodoral plus numerous supplements, vitamins, full BHRT. I still feel awful. Extreme fatigue, intermittant blurry vision, you know the drill......> > > So......since it's obvious that my a.m. Free T3 range doesn't change, I'm still not converting enough T3 from T4 and my Free T4 continues to drop with each dose increase what next??? My doc is pretty reasonable about doing what I ask, but I'm not sure WHAT to ask for next. The only way I can tolerate thyroid meds seems to be in time release. Before this, it would crash my adrenals no matter how much extra hydrocortisone I would take.> > My doc suggested upping the a.m. T3 time release dose to 15 mcg. (from 12.5) but it makes my head feel dizzy and all wonky. And, my heart rate increases, which makes my heart palps even worse.> > If T3 is the ACTIVE thyroid hormone, does taking T4 (synthetic or otherwise) really make THAT much difference in the way you feel, energy levels, reduction of thyroid symptoms? And, if I do go to Armour, then I'm back to dealing with the 'dump' of T3 in my system (not time release). > > Suggestions? Ideas?> > Steph Stultz Get ideas on sharing photos from people like you. Find new ways to share. Get Ideas Here!

[Guest guest]

And, the crazy thing about this is that the docs at the Chronic

Fatigue and FM centers don't seem to have the slightest clue about

this. Every single person I've met that is treated there (on the T3

only protocol) ends up with a low Free T4 after a while - they even

do this with folks that are doing okay on Armour, but might just

need the nutritional and detox support offered by the center! My

theory there is that these docs might initially see it in the okay

range and assume folks ONLY have a conversion problem. But, as you

say, over time the pituitary that reacts more based on Free T3 than

Free T4 stops telling the thyroid to produce much (if any) T4 or T3.

One of my friends added the T4 Rxed by her PCP and noticed a huge

difference. She is going to try to work with the CF/FM center doc,

but I doubt she'll get through to her. I can't imagine how many

people are on this T3 only protocol that are still struggling and

blaming it on their Fibromyalgia or CF, since mainstream medicine

only deals with the symptoms (e.g., Lyrica, pain pills, sleeping

pills and anti-depressants). Unfortunately, it's bad for their

business when it's something as simple as needing more thyroid

hormone.

Sorry to rant so much, but I have several close friends that have

been so very depressed (both on disability) and when they get into

this mode, they lose all hope. It took me months of telling them

this, them going to the doctor and telling them it just wasn't the

case (BUT not running Free T4 or telling them a below Free T4 meant

nothing!) In my experiences, the psychological impact can be even

more profound than the physical which just isn't acceptable in my

mind and totally violates the " Do no harm " aspect of the Hippocratic

oath.

Peace and healing,

B.

> >

> >

> > Does anyone have any experience with or research regarding

Thyroid

> Neuropathy? Namely, the pins/needles, electrical shock sensations,

> tingling, etc. in the extremities and body. I've had it for 6

years and

> it's not resolving yet, even though I've started in May on T3

> sustained-release, now at 12.5 mcg. in the morning.

> > Now for the big question....what next? Opinions?

> >

> > All blood tests were taken at 7:30 a.m. without taking my T3

yet. I

> did take my 25 mg. of sustained release hydrocortisone (I have

's

> Disease).

> >

> > Before I started T3 in May '08. Started on 5.0 mcg. timed

release T3

> > TSH = 4.2

> > Free T3 = 2.5

> > Free T4 = 1.26

> >

> > Titrated dose to 7.5 mcg sustained release in a.m., retested 1

month

> later

> > TSH = 3.0

> > Free T3 = 2.6

> > Free T4 = 1.1

> >

> > Titrated dose to 10 mcg. then 12.5 mcg and retested 1 month later

> > TSH = 2.5

> > Free T3 = 2.5

> > Free T4 = 0.9

> >

> > My FERRITIN is now 63 (was 53 in June)

> > Serum IRON is 90 (was 68 in June)

> >

> > I'm taking Iron and B12 and 1/2 tab of Iodoral plus numerous

> supplements, vitamins, full BHRT. I still feel awful. Extreme

fatigue,

> intermittant blurry vision, you know the drill......

> >

> >

> > So......since it's obvious that my a.m. Free T3 range doesn't

change,

> I'm still not converting enough T3 from T4 and my Free T4

continues to

> drop with each dose increase what next??? My doc is pretty

reasonable

> about doing what I ask, but I'm not sure WHAT to ask for next. The

only

> way I can tolerate thyroid meds seems to be in time release. Before

> this, it would crash my adrenals no matter how much extra

hydrocortisone

> I would take.

> >

> > My doc suggested upping the a.m. T3 time release dose to 15 mcg.

(from

> 12.5) but it makes my head feel dizzy and all wonky. And, my heart

rate

> increases, which makes my heart palps even worse.

> >

> > If T3 is the ACTIVE thyroid hormone, does taking T4 (synthetic or

> otherwise) really make THAT much difference in the way you feel,

energy

> levels, reduction of thyroid symptoms? And, if I do go to Armour,

then

> I'm back to dealing with the 'dump' of T3 in my system (not time

> release).

> >

> > Suggestions? Ideas?

> >

> > Steph Stultz

>

[Guest guest]

I understand that some of these F & F docs can be browbeaten into prescribing Armour. . . . .

> > >> > >> > > Does anyone have any experience with or research regarding > Thyroid> > Neuropathy? Namely, the pins/needles, electrical shock sensations,> > tingling, etc. in the extremities and body. I've had it for 6 > years and> > it's not resolving yet, even though I've started in May on T3> > sustained-release, now at 12.5 mcg. in the morning.> > > Now for the big question....what next? Opinions?> > >> > > All blood tests were taken at 7:30 a.m. without taking my T3 > yet. I> > did take my 25 mg. of sustained release hydrocortisone (I have > 's> > Disease).> > >> > > Before I started T3 in May '08. Started on 5.0 mcg. timed > release T3> > > TSH = 4.2> > > Free T3 = 2.5> > > Free T4 = 1.26> > >> > > Titrated dose to 7.5 mcg sustained release in a.m., retested 1 > month> > later> > > TSH = 3.0> > > Free T3 = 2.6> > > Free T4 = 1.1> > >> > > Titrated dose to 10 mcg. then 12.5 mcg and retested 1 month later> > > TSH = 2.5> > > Free T3 = 2.5> > > Free T4 = 0.9> > >> > > My FERRITIN is now 63 (was 53 in June)> > > Serum IRON is 90 (was 68 in June)> > >> > > I'm taking Iron and B12 and 1/2 tab of Iodoral plus numerous> > supplements, vitamins, full BHRT. I still feel awful. Extreme > fatigue,> > intermittant blurry vision, you know the drill......> > >> > >> > > So......since it's obvious that my a.m. Free T3 range doesn't > change,> > I'm still not converting enough T3 from T4 and my Free T4 > continues to> > drop with each dose increase what next??? My doc is pretty > reasonable> > about doing what I ask, but I'm not sure WHAT to ask for next. The > only> > way I can tolerate thyroid meds seems to be in time release. Before> > this, it would crash my adrenals no matter how much extra > hydrocortisone> > I would take.> > >> > > My doc suggested upping the a.m. T3 time release dose to 15 mcg. > (from> > 12.5) but it makes my head feel dizzy and all wonky. And, my heart > rate> > increases, which makes my heart palps even worse.> > >> > > If T3 is the ACTIVE thyroid hormone, does taking T4 (synthetic or> > otherwise) really make THAT much difference in the way you feel, > energy> > levels, reduction of thyroid symptoms? And, if I do go to Armour, > then> > I'm back to dealing with the 'dump' of T3 in my system (not time> > release).> > >> > > Suggestions? Ideas?> > >> > > Steph Stultz> >>

[Guest guest]

Hi ,

I know exactly what you mean when you say that the normal adrenal glands make 40 mg. a day of cortisol. And I always assumed that's how much one would take.

I should clarify my dose....I take the 25 of timed release between 4:30-5:00 a.m. when I wake up (which I do 3-4 times a night) and then at breakfast (around 7 a.m.) I take 2.5 mg. HC from WIP and another 2.5 HC from WIP at dinner. During the night, when I wake up so many times I'll pop an Isocort (which is = to about 1.25 mg. of HC), which seems to SOMEWHAT calm my racing heart, which we presume is caused by low cortisol in the system driving the adrenaline response. So all in all I probably take about 32.5-34 mg. TOTAL HC per day.

From everything I keep reading, both on the U.S. 's Yahoo chat site and the U.K. 's chat site, the average total dose of HC per day for diagnosed 's patients seems to be 25-35 for men and larger women and 20-30 for the average woman. And this is their full replacement dose, which I always assumed would be higher. Some take Prednisone in equivalent HC dose which I can't tolerate.

There is a small percentage of 's patients that still make adrenaline in the second section of the adrenals but most are completely shut down on all cortisol and adrenaline production or have no adrenals at all. THOSE people tend to have the crashes that send them to the hospital or require self-administered shots of Solu-Cortef. The rest of us compensate by the fact that the adrenaline production kicks in in lieu of cortisol. This keeps us alive but creates real havoc on our bodies as this tends to occur often, sometimes ever day. Everyone on the sites 'stress doses', sometimes double or triple what they are taking when necessary and then tapers back to whatever dose they were before the stressor.

And yeah, I do have 's unfortunately. In the 6 years I've been dealing with this....it was

1.) about a year or two of overproduction in the Adrenals (whipping the dead horse) which burned basically burned them out.

2.) about 4 years of gradual decline from A.M. cortisol saliva tests showing, less say on an average range of 9-15 in the morning 8 a.m. my score fell from 7.0 to 5.0 to 3.0, which was about 1/3 of the lowest range. And then the other 3 saliva test snapshots would be nearly nothing. I can't TELL you how many endos and docs I saw during that time that were unwilling to accept the saliva tests and unwilling to run an ACTH stimulation.

3.) At that point I went on full replacement HC last year, first on my own, knowing that I couldn't wait any longer to replace what I wasn't making and knowing that I'd shut the adrenals down, probably permanently, which was a moot point by then since I was still so debilitated and not able to tolerate ANY thyroid meds. Then I found a doctor who so far is willing to work with me. That's Dr. Alavi in Houston. She fully agrees I have 's and is willing to accept every test I had done on my own (saliva, blood and urine). We WOULD have run an ACTH stim test but you have to be fully off the HC, which I can't do at this point.

4.) Now my a.m. cortisol level is about .03, showing no production. Sigh......

Steph S.

To: Texas_Thyroid_Groups From: marin@...Date: Fri, 22 Aug 2008 21:25:39 -0500Subject: Re: Thyroid Neuropathy and What Next?

Now you can look this up to confirm, but doesn't the cortisol output of a normal pair of adrenalf glands equal to about 40 mgs or so? I can hardly believe that someone with 's Disease would need only 25 mgs of hydrocortisone. That amount is saved for people who have adrenal fatigue, and the adrenals still have some output of cortisol. In that case, the hydrocortisone helps to "rest" the adrenals, but an 's pair of glands will not produce anything, plus some of the other hormones. They're dead for life. He did tell you that you have 's?

RE: Thyroid Neuropathy and What Next?

Hi Marti, Yes, it has been ruled out. I had hypoglygemia early on, which is now under control since I changed my diet 6 years ago. I began testing my blood sugar with a FreeStyle meter, just to see if my 'crashes' are adrenal or blood sugar related. My fasting a.m. glucose runs about 70-85 and my 'normal' blood sugar runs 100-110. My doc also checked my a.m. fasting insulin which was 15.3 (range 1.9-23.00) and said it looked good. I know about 15-20% of 's patients also have diabetes, so I'm grateful I don't. Steph Stultz

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