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BTD Forums  /  Live Right 4 Your Type  /  Help - TSH Levels Still Going Up
Posted by: SoulfulLori, Saturday, January 16, 2010, 5:02pm
I know quite a few of you here deal with thyroid issues and take meds or supps for them.  I've had my TSH under control for some time or so I thought until the doc called me today with results...

First...for well over a year I was around 1 for TSH (give or take a little) and feeling Ok.  Not great but doable.  Then suddenly it jumped up to over 2 and my doc increased the Synthroid to 112 mcg.  It settled back to 1.7 and he left things alone.  Now 6 months later it is up to 3.07.  I told him that I struggle with fatigue and some other issues and perhaps could I switch to a T3 support as well or Armour or something.  He just said to increase the med to 125mcg and try to make sure I am taking it consistently the same way and to make sure the pharmacy gives me the same brand all the time.  Ok...the mail order system did switch brands on me and that concerned me.  Could that alone be the problem?  

I don't have another appointment for 6 months.  What if my TSH continues to go up and I'm feeling lousy for no reason other than they should further increase my med?

Part of me wants to take the suggestion of another on this board and do a phone consult with the thyroid doc that has his own supplement that supports T3/T4 (my doc says my T3 numbers are great though).

I am doing LR4YT and feeling so much better with my depression issue and my sleep issue and my allergies...all in a few weeks.  My husband is so impressed with what this diet has done that he is willing to have me type him and make suggestions for his diet.  He even helps me make good choices because he says I seem so clear and even tempered that he doesn't want to go back to the way things were.  I feel sharp as a tack on this diet...just still a little on the cold and draggy side.

I"m frustrated that I really don't know how to handle this.  I want to do the right thing to provide myself with opportunities for good health and lower fatigue.  I'm afraid to come off prescription med and not have a doctor locally to monitor this.  I just don't feel good about his suggestion to up the med and see you in 6 months.  

Any thoughts?  Any suggestions?  Am I wrong in thinking there is a better way?  
Posted by: Lloyd, Saturday, January 16, 2010, 6:35pm; Reply: 1
The problem is to find out why your TSH is going up. Using a shotgun approach may take care of the issue but you won't know what it is that is solving the problem and whether it is a something that is merely 'holding the fort' or if it may lead to longer term improvement. It's also possible that there is no longer term improvement, depending on what's wrong.

Since allopathy is more concerned with making things not get worse than actually fixing a problem it is up to you to push in the direction that will lead towards discovery of what the underlying is. It's a good guess that it is somewhere in then HPT and/or HPA axis but there may be contributing factors.

Hopefully you have a record of your lab results going back a few years. It may be helpful in zeroing in on a target. Your doctor should provide these on request. Also, if you are not getting detailed testing (more than just TSH) it is really adds to the guesswork as far as the thyroid goes.
Posted by: Chandon, Saturday, January 16, 2010, 7:09pm; Reply: 2
I was told last year that my TSH was 3.38 and that it was normal. That was an endocrinologist. I don't know yet what mine is now, but I'm on day 5 of natural thyroid hormone that was compounded (to be like nature-thyroid, I believe). My temperature is coming up now, I'm less achy, I feel better, and I don't seem to need to eat as much.

Perhaps you should switch doctors or get a second opinion, at least, from another doctor? I was so relieved when my doctor was responsive to using a natural option. It is tiring having to deal with doctors who feel they know all and aren't really interested in listening to or accommodating their patients.

Are you keeping a food diary? Having real data on hand about what you're eating and how you feel, sleep, and function can be really helpful and perhaps bolster whatever case you want to make to a doctor.

If it is eating away at you that your doctor didn't listen to you, that stress isn't healthy, so looking into another doctor could be what you need.
Posted by: SoulfulLori, Saturday, January 16, 2010, 7:13pm; Reply: 3
Thanks LLoyd.  I totally agree and this is my fear.  I am a might upset at this point.  I try so very hard to take care of myself and do things that are not abusive to my body.  Yet, it seems I am always walking around feeling exhausted like I have to push myself through normal activities.  If I have a day where I have a good amount of energy, it is usually followed by 2 days of complete exhaustion and feeling like I'm freezing.  For so much effort on my part I feel like I get minimal return.  

Yes, I can get a ton of lab reports.  Yes, they've looked at more than just TSH and T3-T4.  The comment from my doc was that I always had a mild case of hypothyroidism (no explanation for that) and radiation just did in my thyroid.  He says my thyroid will continue to function less and less as I age and somewhere after my 50's it should level off.  Pardon me but...that's NOT helpful.  When I tell him, or anyone for that matter, that I really don't feel well and that my high level of functioning is based on my tough will and sheer determination they just ignore me.

For the record, months before I was diagnosed with cancer I went to MD"s telling them I felt very ill and that something was off.  They told me I was depressed.  Then as symptoms got worse, they told me I needed to relax more and stop exercising so much.  Then I was told I pulled a muscle.  At that point when I googled my symptoms they all pointed to lymphoma.  I mentioned it in a quiet way to my doc (a different doc then) and he told me to stay off the computer.  Then I had fluid around my heart and I was told it was a virus.  I told the doc that this must be the worst virus known to man because I feel sicker by the day and have dreams of my death.  It wasn't until I was rushed to the emergency room and lived with a crash cart beside my bed for 10 days that anyone really believed me.  Ok...that's a bit of drama there but seriously...I'm disgusted.  

Another for the record is when my thyroid started to fail after radiation I told the docs I think my thyroid is off.  They said it doesn't happen that fast and to relax.  Well, in days I complained of major cramping and shortness of breath and angry outbursts.  I went to my onc and yelled at him in a way I never would do if I was well.  He sent in a shrink.  Luckily the nurse thought it was odd and pulled a TSH and there it TSH was near 30!

I KNOW MY BODY.  There is something not right.  I pray to God that by following this diet and making an appointment at the clinic someone can possibly give me the tools to heal myself.  Heck...I'd take 50% improvement.

Sorry for the rant.  I'm just so darn frustrated.

Sorry are spot on.
Posted by: SoulfulLori, Saturday, January 16, 2010, 7:15pm; Reply: 4
Very good idea Chandon.  I WILL ABSOLUTELY DO THAT.  My endo is supposed to be one of the ones that uses alternative methods but he refuses to hear it with me.

Food doc maybe.  Now to find one that has a more open mind.

Yes, I am officially stressed.
Posted by: Plucky, Saturday, January 16, 2010, 7:20pm; Reply: 5
I don't know that much about the A diet, but perhaps there are too many goitrogenic foods on that beneficial list for YOUR particular situation?  Like soy, brussels sprouts, cabbage, and kale?

I have a friend who's levels got all messed up when the pharmacy switched her brand of throid meds...maybe you can try to switch back and see if that helps?
Posted by: Wholefoodie, Saturday, January 16, 2010, 9:34pm; Reply: 6
Lori, I can feel your frustration. Unbelievable stories. I am so glad you are going to the clinic. I am sure they will offer great insight and help straighten things out. Please try not to stress. Do you meditate or practice yoga?  See if you can find Svaroopa yoga in your area. This is a lovely meditative yoga practiced from the floor with a nice amount of time spent just being in touch with your body. I feel a renewed sense of wellness after I practice it.  

My thyroid is a little off and my naturopath has me taking a natural remedy.  But please, don't let stress do any more damage. Type A's need to be particularly aware of this. Let it go and concentrate on finding solutions and healing. The best to you and may you be well.
Posted by: jeanb, Sunday, January 17, 2010, 12:49am; Reply: 7

You might want to read through this website and tell your doctor it is time to switch to bioidentical thyroid.  I was on synthroid and I was a complete mess, my doctor switched me to bioidentical and things righted themselved within 48 hours.
Posted by: 7847 (Guest), Sunday, January 17, 2010, 2:24am; Reply: 8
E-Seven is on the internet. I loved the choc and natural (only) the rest yuck. But it works and its FOOD.
Posted by: SoulfulLori, Sunday, January 17, 2010, 1:14pm; Reply: 9
Lisa - thanks for your words of calm and good advice.  I will check out the yoga thing.  Basically I do yoga from the free stuff on cable.  $$ is an issue and I've been saving to go to Dr. D.  You don't know the half of my crazy story.  Actually, there is a Yahoo group of people with my type of cancer and they all have similar stories.  Actually I did better than most.  What freaks me out is I knew.  C'mon, I was telling them that if I tried to rest in bed I would have sharp pains down my left arm and couldn't breathe unless I jumped up and did something to get my heart rate up.  I slept sitting up for months.  My pulmonary artery had less than 30% flow by the time anyone believed me.

Jeanb - I looked at that website many times and just read what you posted.  I would need a doc to help me with that and I doubt mine will.  He has seen my blue fingers and I've told him about my issues and he keeps telling me I'm fine.  I actually found him off of a website that gave him high reviews for out of the box thinking and for not supporting synthroid as the main med.

Marylin - couldn't find what you were talking about.

I think it comes down to trust for me.  I have COMPLETELY lost trust or faith that anyone really knows how to handle this for certain.  Maybe I just need a nap.

Thanks everyone for listening.
Posted by: SoulfulLori, Sunday, January 17, 2010, 1:29pm; Reply: 10
Jeanb - I just read what the tests results mean on labs.  I don't have my new lab results in front of me yet but I remember the last ones said my Ferritin was at 17.  I remember this because he consistently checks this and tells me to take iron pills.  I've done that in the past and it makes me so sick to my stomach that I always give up on them.  

I need a new doctor.  Oh...where to find one.
Posted by: Andrea AWsec, Sunday, January 17, 2010, 1:38pm; Reply: 11
Dr. D'Adamo is not far away. The clinic at Bridgeport would give you new direction.
Posted by: jeanb, Sunday, January 17, 2010, 1:40pm; Reply: 12
Hi Lori:

Some of the things that go hand in hand with hypothyroid is low Vit A and low Iron.  I take supplements for both.  I have to take chelated forms of any type of mineral or else I start the nausea as well.

I always take iron after eating something substantial.  I don't have my bottle in front of me, but I will grab it and let you know what I take.

I have been taking iron for about 18 months and the tiredness lifts a bit every month, I feel great every day of the month except the first day of TOM when I need to have a nap.

I did doctor shopping before I found the doctor who listened to me.  He did the adrenal tests and then he did a quick achilles tendon reflex text which found no reflex.  He started me on synthroid immediately, but did take blood tests.  One month later he called me in, said he attended a conference over the weekend about hypothyroid issues.  He asked me if anything has improved, then promptly switched me to bioidentical thyroid.  Within 48 hrs the pains in my large muscles left and the itchy skin started relieving itself.  He said I could take more or less depending on how I felt, but he wanted a record, I need to take more 4 days before my period and if I am losing body fat because of the estrogen circulating in my body.
Posted by: SoulfulLori, Sunday, January 17, 2010, 3:20pm; Reply: 13
Andrea - I read Dr. D's books and it makes sense to me.  I've noticed that some foods that are bene in the book are not so for me and I do believe he could tweak that as well.  I feel as if he is my last hope and if I were to be honest about my feelings I'm afraid that if I don't find things helpful I'm out of options.  I know how awful that sounds, even as I type I want to hit delete because that is very negative thinking but I"m just trying to be honest about my feelings.  My brain says other things that are more positive and rational, my heart though feels a little broken.

Jeanb - this is very helpful info.  I'm struggling also with taking B vitamins, they also eat up my stomach.  I've been following the diet now for a couple of weeks or so and for the most part I felt so much better but I've noticed that my stomach now feels "raw" and sore and like I can't digest one more vegatable.  Actually, my digestion is sort of on the outs, things are not breaking down.  I need the iron pill and I did not know about the A.  I guess it all comes down to getting to Dr. D and finding an endo that will listen to me.  Speaking of TOM, I struggle in that area too and I'm do the last day of the month and already my breasts are so sore and I feel very moody.  I keep telling myself not to fall for this chemical reaction in my body and keep my wits about me but it is tough.

This all sort of started turning bad last Sunday.  I had a glass of wine that left me feeling so sick.  I used to be able to drink you under the table but of late I can't stomach even one glass.  Well, the next day I went the first time to water aerobics with my mom.  It was gentle and fun and left me sleeping like a baby for the first time in a long time.  So much so I snored.  Well, the next day I started out fine only to be feeling depleted and so ice cold.  I've been cold, moody and have had blue finger tips ever since.  I blamed it on tofu.  Maybe it is everything.

Sorry for the long posts, I have been trying to manage this for so long and I feel like I'm losing a grip on it.
Posted by: NewHampshireGirl, Sunday, January 17, 2010, 3:49pm; Reply: 14
I hope you can see Dr. D'Adamo soon.  

I had a cancerous nodule on my thyroid and subsequently had my thyroid removed and followed with radioactive iodine treatment.  My oncologist began me on Synthroid.  I then regularly visited an endo who continued the Synthroid.  My mood would be fairly normal some days and depressed on others.  My weight was climbing up no matter how much exercise I was doing.  My legs ached and my hair was falling out.  One day I read jeanb on this forum as she went through her litany of problems while taking Synthroid.  She related how much better she felt on Westhroid.  That did it for me.  I read Mary Shoman online, plus Stop the Thyroid Madness online and next visit to the endo said I would like to be switched to Westhroid.  One of the things I happened to mention as I gave her my reasons is that the desiccated thyroid replacement has T1, T2, T3, and T4.  She said she didn't even know there were T1 and T2.  :o   This was an endocrinologist I was speaking with!!!!

She said she would change me over to Westhroid.  I began Westhroid and began losing weight, my hair loss stopped and I felt great.  Then I requested my own doctor follow my thyroid problem as well as my general health.  There was no problem with that so I don't see the endocrinologist anymore.  You could say I was very determined at this point for my doctors to listen to me and not quibble about the fine points of allopathic medicine.

I wish you well, SoulfulLori.  A person should not have to go through all the agony you are experiencing!!
Posted by: Chandon, Sunday, January 17, 2010, 3:51pm; Reply: 15
Quoted from jeanb
Hi Lori:

Some of the things that go hand in hand with hypothyroid is low Vit A and low Iron.  I take supplements for both.  I have to take chelated forms of any type of mineral or else I start the nausea as well.

I always take iron after eating something substantial.  I don't have my bottle in front of me, but I will grab it and let you know what I take.

One thing I read is that iron supplements can compete with the thyroid medication, so it's important to not take it too close to when you take the thyroid med. You probably know that already, but that's something for SoulfulLori to consider.

Posted by: SoulfulLori, Sunday, January 17, 2010, 5:13pm; Reply: 16
Chandon - yeah, I know that too.  So do walnuts if taken within 4 hours and a whole host of other stuff.  Oh the joy!  Thanks for the info Chandon.

NHG - THANK YOU  for your post.  I like what you had to say and how you handled it.  You know, I was sort of sitting here thinking I could just demand what I want but the fact is I just don't trust him now.  I need someone I can trust.  My doc I thought was the best as you can see by this link...scroll down to Dr. Anthony Jennings  There is a guy in North Jersey that doesn't take insurance though...maybe I should try him?  Anybody know him?  

Posted by: SoulfulLori, Sunday, January 17, 2010, 5:19pm; Reply: 17
Just now looked at my report from Quest...GRRRRRRR.

First, my TSH was 3.09 not 3.07 as he said.

Second he did not test Ferritin this time or Free T3 T4 but only T3 Uptake (useless)

I mentioned to him how just one little glass of wine makes my heart race now and how I don't seem to absorb vitamins and such and I think it is connected...he dismissed it.  I was just trying explain to him the weird things that have been going on lately.

He tested Total Cortison - Useless as well.

Posted by: SoulfulLori, Sunday, January 17, 2010, 5:32pm; Reply: 18
Oh and he tested A1c which was 5.4...that's good right?
Posted by: Lloyd, Sunday, January 17, 2010, 11:40pm; Reply: 19
Quoted from SoulfulLori
Oh and he tested A1c which was 5.4...that's good right?

Yes, that's in the normal range.

From the Mayo site:

It's important to note that the effectiveness of A1C tests may be limited in certain cases. For example:

If you experience heavy or chronic bleeding, your hemoglobin stores may be depleted. This may make your A1C test results falsely low.
If you don't have enough iron in your bloodstream, your A1C test results may be falsely high.
Most people have only one type of hemoglobin, called hemoglobin A. If you have an uncommon form of hemoglobin (known as a hemoglobin variant), your A1C test result may be falsely high or falsely low. Hemoglobin variants are most likely in blacks and people of Mediterranean or Southeast Asian heritage. Hemoglobin variants can be confirmed with lab tests. If you're diagnosed with a hemoglobin variant, your A1C tests may need to be done at a specialized lab for the most accurate results.
Also keep in mind that the normal range for A1C results may vary somewhat among labs. If you consult a new doctor or use a different lab, it's important to consider this possible variation when interpreting your A1C test results.
Posted by: LuckyDog, Sunday, January 17, 2010, 11:58pm; Reply: 20
Lori - are you avoiding all gluten? I'm not savvy enough to know if there is any gluten in the A diet. The malabsorption and thyroid just made me need to confirm or ask.
My Osteo is amazing with managing my thyroid however I know I'm a bit of a hike for you being up in central-eastern NJ.  My particular doctor is not taking new patients but his associate is very good.
Posted by: Chandon, Monday, January 18, 2010, 4:24am; Reply: 21
I think Dr. Podell has a radio program. The name sounds really familiar.
Posted by: SoulfulLori, Monday, January 18, 2010, 12:29pm; Reply: 22
LLoyd - Thanks, that is interesting info.  I think I'm good.  Years ago they tested it and it was 5.9.  With a strong family history of diabetes I was told to watch myself because it was high normal.  I'm not going to go on the other side of 6, that's why I'm here.

Chandon - Yeah, he does have a radio program.

LD - The past few weeks I would say I'm 98% gluten free.  I have not purposely ingested anything with gluten but I did eat out so...
I'll check out the docs, I'm in Southern NJ but that wouldn't stop me from going to a good doc!  Thank you!
Posted by: Jane, Monday, January 18, 2010, 2:58pm; Reply: 23
My story is very much lilke NHGirl's.  I had thyroid cancer caused by radiation to my tonsils as a baby.  I had my throid and one of my parathyroid's out in 1996.
I've been on thyroid meds since my freshman year in college (back in the 60s).  I started out on cytomel (T3) and was switched to synthroid when I was pregnant with my first child (he's 34 now).  When I moved to MA and switched docs they had my on an exceptionally high dose of synthroid to suppress any natural function.  I changed docs after a cousin of mine who had thy cancer who went to the same doc died when it went to her brain.  The doc I switched to has a worldwide reputation but he wouldn't even consider letting me try a T3 medication so in 2003 I switched again to Kenneth Blanchard who wrote a book on why you need to have a mix of T3/T4, etc.  I'm still not doing as well as I'd like especially with the weight issues which really puzzles him.  He's very responsive.  He gave up taking insurance a few years ago but doesn't charge as much as most docs.  Currently I take a mix of some levoxyl and a compounded T3 medication.  

Remember that it's typical for TSH to be a little higher in the winter.  I hope you find a solution soon.  It's such a frustrating and exhausting problem and one that so many doctors think has an easy fix.  They are SO wrong.  
Hang in there!
Posted by: SoulfulLori, Tuesday, January 19, 2010, 3:49pm; Reply: 24
Jane - nobody ever told me about TSH being higher in the winter.  why don't they tell you these things?  Grrr.  Mine just keeps creeping up and up over the past year.  Have an appoinment with Dr. D in March and that will change everything I think.  Thanks Jane!  I hope things get better for you too.  :)
Posted by: NewHampshireGirl, Tuesday, January 19, 2010, 8:45pm; Reply: 25
SL, I understand how you feel about not being informed.  I found out only last year while reading a book about thyroid that it is usual for a person to require more thyroid supplementation in the winter.  Same reaction as you......why didn't someone tell me this!!  I guess that's just an example of why I keep searching for answers, myself, since no one person is going to come forth and give me all the answers to my health questions. (book2)
Posted by: SoulfulLori, Tuesday, January 19, 2010, 9:00pm; Reply: 26
Yeah, I hear you.  When I first started thyroid med my onco set it up.  Told me nothing about food, walnuts, calcium, or iron and how it can alter or diminish potency.  Nope.  So, I did reading and found that out and told him what I found.  As a matter of fact I brought in the pamphlet from the pharmacy that said much of that.  He said he had no idea!  Are you kidding me?  So I continued to study and research.  I was ok with my endo that I found and thought things were good.  I blamed issues on other things and for the most part it was true.  However, when I saw he did not test Free T3 T4 I was in shock.  He always tested Ferritin and stopped even though he knows mine is always so very low.  I mentioned diet and other things and he said nothing.  I don't have to tell you more, you know the story cause you've lived it.

So NHG, I'll share all that I know if you do.  :)  Seriously, I'm sure you have a lot more answers than I do considering your experience.  I'm brand new for the most part.

What do the dummies of the world do?  I don't mean to sound cruel my my MIL, who I adore, thinks because something says "healthy" on the wrapper it is even though it has a list of 50 chemicals in it.  Sigh.  What do these people do when they are ill?
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