Underactive Thyroid Gland

[twinflower2]

My readings go up and down and so too does my medication. I don't understand this.  Should I used the dame lab each time?

The doctor only seems to give me TSH and 4 bloodwork.

Here are my TSH results since 2011:

Aug 14.4
Sep 0.81
Feb .03
Mar .02

Doc has me on 112 now but in the past I've been on 100, 112, 125, 137. My T4 reading in Aug 2012 was 11.7 (okay).

It just seems backwards to me to have an Underactive Thyroid and then the doctor lowers the medication?

This is for starters. I've had a long history of thyroid disease but in my 20's and 30's it was very overactive.  Since my 40's I've had an Underactive Thyroid.

Can some of you please shed some light on this condition and tell me what foods will help/hurt, what medications hurt (lithium?).  I've done some research but some info seems contradictory.  My doctor doesn't seem to think there are any food issues.

Thanks, Christina
P.S. I've gained over 30+ lbs since going underative.  I can't seem to take it off no matter how hard I try and I'm frustrated.

[twinflower2]

This is driving me nuts.  Whoever heard of drinking all that colon. stuff and gaining weight after the procedure (3 lbs).  If I could just lose 20 lbs I know I'd look and feel better.

I'll be visiting my Psychiatrist soon and will ask him if I can go off the lithium.  I don't think it does anything for me anyway.  

Taking the thyroid tests now would be too soon as I've only been on the new medication for less than a week.  They say it's better to wait 4-6 weeks.

The other problem is the agonizing pain and fatique.  I have no pain medication thanks to my doctor of more than 13 years. This is the first time I have called him to say I ran out (and for good reason).  For him to tell me twice I will just have to suffer is demeaning and incompassionate.  For this I must change doctors.  I can and will do without people like him.  I'll go to him on the 17th and see what he gives me and then I'm off to another doctor (I have a referral).  I think we need younger doctors.  Most of these old foggies, in my opinion, do not keep up with modern medicine.

I've even thought about going the natural route for the thyroid.  What are your feelings on that? Give synthroid an Cymatel up?

Thanks, Christina
P.S.  I feel if I could get my thyroid stable, at my natural setpoint, I'd feel better all the way around.  I suffer from depression big time but I feel like I want to deal with it in my own way not on bi-polar medication.  If necessary I could always go back.  They took the Wellbutrin away when I had my first Grand Mal Seizure on Oct 5, 2011 (none since...on Reppka ER).

[twinflower2]

This is driving me nuts.  Whoever heard of drinking all that colon. stuff and gaining weight after the procedure (3 lbs).  If I could just lose 20 lbs I know I'd look and feel better.

I'll be visiting my Psychiatrist soon and will ask him if I can go off the lithium.  I don't think it does anything for me anyway.  

Taking the thyroid tests now would be too soon as I've only been on the new medication for less than a week.  They say it's better to wait 4-6 weeks.

The other problem is the agonizing pain and fatique.  I have no pain medication thanks to my doctor of more than 13 years. This is the first time I have called him to say I ran out (and for good reason).  For him to tell me twice I will just have to suffer is demeaning and incompassionate.  For this I must change doctors.  I can and will do without people like him.  I'll go to him on the 17th and see what he gives me and then I'm off to another doctor (I have a referral).  I think we need younger doctors.  Most of these old foggies, in my opinion, do not keep up with modern medicine.

I've even thought about going the natural route for the thyroid.  What are your feelings on that? Give synthroid an Cymatel up?

Thanks, Christina
P.S.  I feel if I could get my thyroid stable, at my natural setpoint, I'd feel better all the way around.  I suffer from depression big time but I feel like I want to deal with it in my own way not on bi-polar medication.  If necessary I could always go back.  They took the Wellbutrin away when I had my first Grand Mal Seizure on Oct 5, 2011 (none since...on Reppka ER).

[Barb135]

Oh, sorry to hear that you have to have colon.... today; yes, I'm sure you did have a brutal evening and night!!  

Is there anyway you can get the blood work moved up, rather than waiting 5 more weeks?  

Yes, it's hard to know what to do when you get conflicting answers; I'm sure your pharmacist wasn't thinking about the spike/dip when he said to take the cytomel all at once. Sometimes, it takes someone who's been there, done that.......lol   Bottom line, though is that it's usually best to follow the doctor's instructions.

Cytomel can be taken either with, or without food; however, if the first dose of the day will be taken with your synthroid, you will need to take that one without food, since synthroid must be taken on an empty stomach and nothing to eat/drink for 30-60 minutes.  

[twinflower2]

Barb, thanks again for he info,  I get more info from you than my own doctors.  As a reminder I will be going in for more testing in about 5+ weeks.  The end has order TSH - TSH AIM, Free T4, Free T - AIM. FT#- FT3 - AIM, Thyroid Antibodies.

I don't know what to do about he CYTOMEL.  I keep getting different answers.  I'm not into spiking!

I'm no better, especially since I have to have a colon... today.  What a brutal evening and night. And I' still not clear.  Anny suggestions for my 2 appt?

As I said I feel terrible and seem to be getter weaker and more sluggish b the day.

As for the CYTOMEL I think I'll do what it says on the bottle, "take one tablet by mouth 2 X a day.  Should that be with or without food?  What's the best way?Thanks, Christina

[Barb135]

I'm not sure if lithium would have caused weight gain, but I'm pretty sure it does react with thyroid medication.

[Barb135]

No, I'm not a doctor or nurse.  I'm a patient just like you and everyone else on this forum.  Some of us have been around a long time; we were helped by others, who used to be here, then stuck around to pay it forward.  We've have spent countless hours researching in order to get well, ourselves, and to help others.

Yes, your FM symptoms could really be thyroid related.  Did you have a chance to read the link I sent you?

Yes, it's okay to take the whole 10 mcg cytomel at once; the problem with that is that cytomel is fast acting and only stays in your blood for a few hours, so the chances of crashing later in the day are much greater.  You could find yourself on a T3 rollercoaster, with a spike in the morning, then nothing the rest of the day. Splitting the 10  mcg into 2 doses, helps assure that FT3 levels will stay relatively stable throughout the day. Not to mention that's it's almost always preferable to start at the lowest dose and work up slowly, in order to avoid reaction to the medication.

I agree that your doctor should have dropped your synthroid, I think....lol

The problem is that he's testing Total T4 and not the Free, so he really doesn't know what's actually available for conversion to FT3. Neither is he testing for FT3, which is the actual usable thyroid hormone; the one that is actually used at the cellular level.  

There should be no reason for your synthroid dose to bounce around all the time.  I've been on 88 mcg Tirosint for nearly 3 yrs.

Your TSH is very low and I hope your endo is not basing your dosage on that, though the fact that he gave you the cytomel, may indicate that he is not; but since he's bounced your T4 med all over the place, it's hard to say, because it certainly appears that he really doesn't have a plan. It's very common for people who are being treated with thyroid hormones to have very low, sometimes, undetected TSH (mine runs
< 0.01).  

Can you ask for another TSH, with FT3 and FT4?  That would tell us SO much  more.

Rule of thumb (doesn't work for everyone) is that FT4 should be around or slightly above mid range, with FT3 in the upper 1/3 of its range.  Since you aren't getting those, you have no idea where you're at.

If I had a doctor bouncing my meds all over the place, actually, did have once and he's  no longer my doctor, I'd not waste any time in finding a different one.

There are other things that can cause some FM - like symptoms, but getting thyroid optimal is key.  

[twinflower2]

Are you a nurse/doctor?  You seem to know an awful lot about this stuff.  All I can say is I'm miserable. I want desparatly to get better.  I want to get off Lithium (the endo said if I had hypo before lithium, lituim would not have made me gain weight.

As far as the contant pain of FM, could it really be the thyroid.  The symptoms are practically the same.  I do have trigger points.  I don't know if people with thyoid disease have them.

I'm also think about getting on a natural thyroid hormone.  Synthroid may just not agree with me.

I'm not sure I'm crazy about the end but we'll see in 6 weeks after the testing.  I decided to take the 10 mcgs of Cytomel in the morning with the syntroid.  The Parmacist said it was fin.

So now I'm on 10 mcgs CYTOMEL and112 Synthroid  (THAT CHANGES ALL THE TIME 100-137).  The endo didn't seem to have a problem with that.

What does this mean to you?.  TSH was 0.02 (0.40-4.50) on 3/27/2012.  He immediately took me off of Synthroid 137 and put me on 125.  Now I'm on 112.  TSH was 0.03 on 3/1/2012.

T4, total was 11.7 (4-5-12.0) on 3/27/ 2012.  14.1 (4.5-12.0) on 3/01/2012.
I guess I just don't get it Barb.  Help!

[Barb135]

It's too bad your pain doctor couldn't give you something, but I do understand that sometimes doctors find themselves between a rock and a hard place, because there are certain drugs they can only prescribe so  much of for a single person.  I went through this with an elderly aunt who could no longer keep track of when to take her med.  There were a couple of times that she had to "ride it out" for a couple days, till I could get her more med.  Telling someone they "have to suffer" is a lack of beside manner, though.

Following is a web page you might find helpful.  FM and CFS didn't even exist until 1980, which was shortly after TSH became the "gold standard" for thyroid testing.  You might find some helpful information on this page.
http://thyroid.about.com/od/thyroiddrugstreatments/l/blderryb.htm

Celiac disease is an autoimmune disease in which one is allergic to gluten, which is a protein found in foods made from wheat or similar grains; the "glue" that holds things together.  If you were allergic to gluten, you'd have a bad reaction every time you ate bread or anything with flour in it.

Being gluten free means you don't eat anything with gluten in.

The weight issue is most likely because your FT3 is not high enough to keep your metabolism revved up.  Since the cytomel is a T3 only medication, it may raise your level enough to increase your metabolism, but you may have to really watch your diet and exercise, as well.  In addition, raising your FT3 level could quite likely help ease your pain and help you sleep better.  

You'll actually be getting 10 mcg daily, since you are to take 5 mcg twice. Cytomel doesn't have to be taken on an empty stomach, so you can take one pill in the morning, with your synthroid, then the other later in the day, say around lunch time; that will keep your levels up throughout the day.  I do find it disturbing that your doctor prescribed a T3 medication, without testing FT3 and FT4.

[twinflower2]

I don't know if I I'm gluten free.  I don't know if I have celiac or what it is. I just started eating Ezekial bread because someone said it was good,

I went to my pain management doctor yesterday but he could not or anyone else see me as they were busy with patients.  I was going to ask about the sleep medication and mention the fact I didn't have anymore pain medication.  The receptionist slipped him a note later and around 5 pm he called me.  He was extremely upset with me and told me he could discharge me but he wouldn't but in the meantime I would just have to suffer (he can't see me until the 17th off April).

The doctor is well aware of how much I suffer.  Telling me twice in one conversation that I would just have to suffer was quite hurtful.  He's afraid he could lose his license or the DEA could get him.  He wouldn't even change the meds because he said that was just skirting the issue.  I've had FM since the late 80's so I've been living with pain/fatigue for a long time, day in and day out.  I do things, other than take pills to help myself, but I still always hurt.

What is celiac disease and what is gluten free and how would I know if they affect me?

Thanks.Will the 5 mcg of cytomel help me lose weight?  I wonder why it was never prescribed before.  I had thyroid disease since my early 20's.  I'm 61 now.  

[Barb135]

Fibromyalgia is often found to be a set of unexplained symptoms, which often go away, once thyroid levels are optimal for you.  

I'm glad the endo is ordering the FT3 and FT4; those will tell us a lot more about what's going on than TSH will.  Did you ask about the antibody tests?  

As goolarra said, many of us don't change the way we eat.  Most people take thyroid medication in the morning, and you aren't going to be eating a lot of cabbage, and other goitrogens, until at least lunch, by which time your thyroid medication will have been dissolved and absorbed.  

Plenty of veggies and protein will help you lose weight, but watch the sauces and toppings; those are what get you.  

You mentioned Ezekial's bread....... are you gluten free?  If so, do you have celiac.  If you don't have celiac why are gluten free, if you are?

[twinflower2]

I just got back from the endcrinologist and even through I have hypothyroidism she thinks that my problems (pain, tired, run down, sleeplessness, fatique, irritability, weight gain. depression, and headache, etc., are caused by Fibromyalsgia.  

She gave me a prescription for CTOMEL (only generic LIOTYHRONNIE SOD 5 MCG TAB).  I'm to take 1 twice daily along with my once daily Synthroid 112 on an empty stomach.  Then in 6 weeks I will have these tests
TSH - TSH - AIM
FT4 - Free T4 -AIM
FT3 - Free T3 - AIM
THYROID ANTIBODIES.

In the meantime the doctor wants me to ask my pain management spcialist to give me something to help me sleep (I cannot take ambien because it makes me walk in my sleep and do strange things).Honestly I don't know what all this means but she doesn't think it's my thyroild, even though I have thyroid disases.

As far as the TSH numbers I indicated she said that's not unual and the numbers were'nt that far apart.

The sad thing is I took all my pain medication early and the doctor is not going to like that.  He may be the doctor but I don't think he gave me enough codeine to take care of my needs so I took extral of that and Soma to get by.  This is an endless cycle for me and it's making me sick in addition to hurting and not sleeping properly.

The endo doctor said eat anything you like.  Healthy food of course.  She doesn't believe in giving up cabbage, kale, brocolli, turnips, and othe "goitrogens."  As for weight gain, lots of wxercise and less food. The exercise part , althought I do it, is difficult due to the FM.

You all answered my questions to my liking and I give you all the "best."  thanks.

Christinia
twinflower2

[goolarra]

Your doctor is most likely going to want to order TSH; he'll want to see it, I'm sure.  

As Barb mentioned, if you don't know the cuase of your thyroid dysfunction, antibody tests would be a really good idea.  TPOab and TGab are the tests for Hashi's.  TSI is the test for Graves'.  I'd consider TSI optional unless your doctor is feeling very generous about testing.

If the doctor orders them, most insurance covers all thyroid tests, but you'd have to question Cigna specifically to be sure.  I doubt whether or not insurance covers it is behind his decision to order only TSH and FT4.  It's much more likely that he learned in med school that TSH was the gold standard of thyroid tests and that if FT4 was good, FT3 was good , too.  We know that neither of those is true, but the medical profession does not change its ways fast.

Many of us have not changed what we eat one iota.  If anything bothers you, avoid it, otherwise, you can eat anything you want.

There's likely little you can do to boost your thyroid.  Hashi's is the most prevalent cause of hypo in the developed world.  Antibodies attack and destroy thyroid function.  Once the thyroid is in effect "dead", there's no bringing it back.

[twinflower2]

The list I found on goitrogens said nothing about cooking.  It simply said avoid them.  I did find some patients say you could eat them if you cooked them.  Also one web site said you could cook the cabbage family foods, etc (goitrogens).

I will call the doctor's nurse and tell her my next test must include FreeT-3 and Free T-4. Do I also need TSH and anything else?  Does insurance (CIGNA) cover all the thyroid tests?  Maybe that's why he just gives me TSH and T-4.  As I said, this and the chronic pain (FM) is wearing me down.

What breads can I eat:  Ezekial?

Thanks for your input.  
Thanks for your kindness
P.S. Barb it was 2011 for 14.4...fat fingers

Is there anything natural I can do to boost the thyroid?

[goolarra]

I agree with what Barb has said.  I can't tell you how important it is to have FREE T3 and FREE T4 tested every time you have blood work.  TSH can be very unreliable, since once on meds, TSH often goes down close to zero.

Goitrogens (you can google a list), when eaten raw can cause thyroid inflammation.

Lithium can decrease thyroid hormone production and cause hypothyroidism.  It is also associated with weight gain.  

As Barb said, TSH is the opposite of what you'd think...when it's high, your thyroid function is low and vice versa.  "It just seems backwards to me to have an Underactive Thyroid and then the doctor lowers the medication?"  If you take too much medication, you can become hyperthyroid, so your doctor has to be sure that your thyroid hormones are kept in balance and you are neither hypo nor hyper.

Can you tell us a little bit more about the contradictory information you've found?  Perhaps we can help shed some light on it.  

[Barb135]

Your doctor is relying way too much on TSH as a diagnostic/treatment tool.  Thyroid can be confusing, but TSH works opposite of what you think it should.  In a perfect world, when TSH goes up, thyroid levels are down and when TSH goes down, thyroid levels are up.  Your doctor is assuming that because your TSH is very low, that your thyroid hormone levels are either high, or normal.  

Unfortunately, doctors who do this tend to keep their patients ill for a very long time.  

Do you know if that T4 in Aug 2011 (?) was Free or Total?  They aren't the same.  If the lab report only says T4 and doesn't indicate Free or FT4, etc, then it's for total, which is considered obsolete and of little value.

You need to be tested for Free T3 and Free T4, which are the actual thyroid hormones that are available for use (FT3) or conversion (FT4).  

Do you know if you have an autoimmune thyroid disease?  That would be either Hashimoto's Thyroiditis, which is generally associated with hypothyroidism or Graves Disease, which is most often associated with hyperthyroidism.   Hashimoto's is often characterized by periods of overactive thyroid in the beginning stages, then as the thyroid is destroyed the thyroid becomes underactive.  If you haven't been tested for antibodies, you should request to have those done.  Tests needed would be Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab) for Hashimoto's and Thyroid Stimulating Immunoglobulins (TSI) for Graves Disease.

Weight gain is common when hypo, because FT3 is instrumental in controlling metabolism.  Once thyroid hormone levels are adequate, many people find that they are able to lose excess weight, though some of us have to really work at it.  

There are other conditions, such as insulin resistance and/or PCOS that cause excessive weight gain/inability to lose, as well, so should also be ruled out, if still unable to lose after thyroid levels are optimal.