Re: a change in meds... question

July 26, 2001

Dear Nanette,

I had a lobectomy and didn't find out that I had fol var of pap until 5 & 1/2

weeks after the surgery. After the PT, my thyroid levels were normal. I

couldn't decide what to do once I found out it was cancer, but that is a VERY

long story you won't want to hear right now. I didn't take any Synthroid for

awhile, and then I saw a doctor who thought the thing to do was to give me

Synthroid for suppression, even though my levels were " normal. " I went on

Synthroid 0.1mg for the first time in my life. The effect on me was not what

I expected. This doctor only wanted my TSH down to 1.0, but it got down to

0.1. I felt very strange, and I got very tired. Like you, I had a hard time

finding anyone who could tell me why I felt that way. Somewhere I read that

when you increase the Synthroid, your metabolism increases, and because " your

engine is running faster, " you have more fatigue--basically because your body

is working harder in the " revved up state. " Another thing I was told by an

endo was that the pituitary is exquisitely sensitive to changes in TSH even

within the " normal " range. His idea is that everyone has a level of TSH that

is " right " for them (since there is a " range " of normal levels), and even

very tiny changes in that level will cause one to feel differently. I don't

know if any of this is correct because most doctors tend to immediately start

to look for other reasons besides the thyroid when I describe the symptoms.

What I do know is that finally, I started to feel consistently very well

after being on a consistent dose of Synthroid for several months. That

doesn't mean that I felt badly the whole time during those months--I just had

periods of feeling weird and tired, which finally stopped. My TSH was under

0.1 most of the time. I wonder if the theory about the body's being very

sensitive to changes in TSH is true, and it just takes time to adjust to each

change? I am not a doctor, but I am a pharmacist. To me these

" explanations " make sense, but I have never been able to get much help from

any doctor in understanding this or been able to find articles or studies

about it. I think that perhaps no one really knows, so maybe these theories

are as good as any!

Hope this helps

Dianne

PT 5/99;TT10/99;fol var pap 1.2cm;RAI 150mCi 7/00;mets to lymph nodes; going

hypo for scan on Aug 7

July 26, 2001

In a message dated 7/26/2001 9:07:54 AM Central Daylight Time,

nanjoeb@... writes:

> Manetta,

>

Hi Manetta,

My levels of calcium were low too and had tingling lips and

tingling/horrible cramps in the hands. The hospital recommended 12-16 extra

strength TUMs but my Endo recommended OSCO 500 with D three times a day with

food. OSCO is a division of Jewels which is owned by Albertson.

That really helped me...

Thanks,

Renata

July 26, 2001

In a message dated 7/26/2001 9:07:54 AM Central Daylight Time,

nanjoeb@... writes:

> Manetta,

>

Hi Manetta,

My levels of calcium were low too and had tingling lips and

tingling/horrible cramps in the hands. The hospital recommended 12-16 extra

strength TUMs but my Endo recommended OSCO 500 with D three times a day with

food. OSCO is a division of Jewels which is owned by Albertson.

That really helped me...

Thanks,

Renata

July 26, 2001

In a message dated 7/26/2001 9:07:54 AM Central Daylight Time,

nanjoeb@... writes:

> Manetta,

>

Hi Manetta,

My levels of calcium were low too and had tingling lips and

tingling/horrible cramps in the hands. The hospital recommended 12-16 extra

strength TUMs but my Endo recommended OSCO 500 with D three times a day with

food. OSCO is a division of Jewels which is owned by Albertson.

That really helped me...

Thanks,

Renata

July 26, 2001

Nanette,

I noticed that you said you have increased tingling in

your hands. Have you had your calcium, vitamin d and

parathyroid hormone levels checked? Low calcium gives

me tingling hands, muscle weakness and I feel very

tired. The normal calcium reference range is very

tight, perhaps you could ask your doc to check if your

levels are normal.

Just a thought. Good luck, I hope you find a solution.

Be well.

=====

Manetta

7/99-TT & R MRND 12 of 37 pos LN

4/00-hypoparathyroidism

7/00-diagnosed Tall Cell,Diffuse Sclerosing variant,Squamoid

4/01-L Suprahyoid neck dissection

Synthroid 250, Rocaltrol 75

age 45

__________________________________________________

July 26, 2001

Manetta,

Yes, I did have my calcium checked on 7/3/01 with the thyroid panel.

I did have low calcium after my surgery and was on 12 Tums a day for

a month. When checked this time, it was 9.3. I was told this was on

the lower end of normal for that lab. I actually have all those

figures somewhere, but I am too lazy to retrieve them at the moment.

I was thinking the low calcium, too, as I occasionally have tingling

lips as well, but I am a BIG milk drinker and do pop an occasional

two or three Tums and lip tingling symptoms go away. It doesn't seem

to help the hand tingling though.

Thanks!!!

Nanette

July 26, 2001

It takes about 6 weeks for a change in thyroid medication to be fully

felt in the body... So a change in early July hasn't caught up with

you yet, it will be the middle of august before you feel the full

effects. You may have still been getting progressively more hypo

from the 24.7 on 7/3 and that may be why you felt so tired. Or a

combination of the heat, humidity, and feeling hypo.

it will be a few more weeks until the effects of your .175 dose can

really be felt.

(and on a side note, your birthday was Tuesday? so was mine, we're

birthday twins, and synthroid dose twins as well (i'm a .175 too))

barb

Barb Burri

dx pap 7/1/99 TT 8/13/99, RAI 63mci 4/26/00 - CLEAN SCAN 12/15/00 -

.175 synthroid

barburri@... // bburri@... // www.burri.com

hailing from Plaistow NH (42 miles Due North of Boston)

> Dear friends,

>

> It has been a few weeks since I last posted, but I have been

reading

> on almost a daily basis. I have pondered posting this as no one

> answered my last post and I still have the question hanging. Aside

> from that, I do have a different question in hopes that someone may

> be able to help me.

>

> I had a thyroid panel done on 7/3 which showed a TSH of 24.7 (my T3

> and T4 were in the lab's normal range). One week post tt, my TSH

was

> 1.6 (that was on 6/1) and I had been on .112 for seven years (was

> hypothyroid prior to tt). Anyway, my doctor increased my Levoxyl

> to .175. I was kind of excited about this increase hoping that my

> energy level would increase as well. I was actually quite

surprised

> at the reading of 24.7 because I have been able to take my kids on

> day trips with lots of walking in the heat and have been fine and

not

> even wiped out in the evening.

>

> My question is: why do I feel MORE tired on this increased

dose???

> I took my kids to Monticello last Thursday and thought I would die

> walking around. Yes, it was awfully humid that day, but I really

> seemed to sweat way more than I normally would and I am the type

that

> only has to stand in the heat (no moving) and sweat. I have

noticed

> this continued trend of the profuse sweating. I have checked my

> pulse and it isn't higher than normal. I was thinking that

the .175

> was too high for me to handle, but without the presence of the

higher

> pulse rate and no palpitations, I doubt that is the culprit. Aside

> from the sweating, I have an aversion to the A/C although I can't

be

> outside in the heat. I have had increased tingling in both hands

> (had this prior to tt, but has gotten worse).

>

> So, any suggestions of why I am so incredibly tired? I couldn't

even

> get out of bed on my birthday on Tuesday!!! My kids brought me

> breakfast in bed, but I couldn't even take a shower until noon!!!

> What is wrong?

>

> I am not even due to see my *new* thyca doctor until 9/19/01, so

> although on my way to being really hypo, I couldn't even take

> advantage of using it for a scan or treatment!

>

> Thanks for listening and I hope someone can respond to me this

> time. )

>

> Nanette

>

> dx pap ca 5/02/01

> tt 5/23/01

> waiting for TBS & RAI

July 26, 2001

Nannette,

When your hands tingle, do all of your fingers tingle or just the thumb and the

first two fingers ?

(hcc)

nanjoeb@... wrote: Manetta,